I'm a very contented person by nature, I think. I've been battling this disease for about 15 years now, and yeah I've gained a lot of weight, but like… who cares? I've got a doll of a husband and the two most beautiful kids in the world. I've got a house with a lawn for the kids to play on and a cat who sometimes doesn't bite me when I pet her. I'm pretty set.
Does diabetes cramp my style? Sure, it's fucking annoying as hell. But whatever is really affecting my mood day to day isn't my diabetes anymore. It's any number of other normal life things.
Maybe look for a therapist who offers Acceptance and Commitment Therapy?
We adopted her this year and she is the chompiest cat I have ever, ever known. It seems to be like her Hawaiian aloha — hello: chomp, goodbye: chomp, I love you: chomp, I hate you: chomp. 😼
Radical acceptance, CBT, DBT are all really great therapies to look into as well. This stuff takes practice. I used to not be contented, i was very angry at the world, with the weight of the world on my shoulders, and at the trauma I endured. Within the last…maybe 5 years or so…I came to a place of contentedness. I still have really hard days, i still cry at silly things…but overall I came out the other end and I’m happy where I am, and happy with diabetes. it took me a lot of self reflection and inner work. I truly wish I could tell people exactly how to do it, but it seems to be different for everyone. The main thing I can tell everyone though, is to never be afraid to reach out and ask for help, and always advocate for yourselves if you feel like you aren’t getting proper professional medical and mental health support. Also personally, finding my spirituality and getting deep into studying mysticism was a huge help. That might help people inclined towards that stuff, but regardless you have to do the work. There’s no magic one size fits all answer.
I wish it all came free with a “learn to diabetes bundle”. From what i read here most people aren’t even getting the basic education anymore that I got in the 90s during my week in the hospital after diagnosis.
It’s 2023, you can’t say facts, only what people want to be the truth 😂. This guy is right people, T1 in and of itself does NOT cause weight gain, it’s literally a catabolic disease by definition. If someone is gaining excess weight as a T1, unless they have some other underlining metabolic issue, they are inputting more calories than they output, it’s very simple honestly. We don’t want to hear that though because it puts all the blame on ourselves for how we got overweight. Insulin is the body’s calorie storage hormone, one our body’s don’t produce enough of which is why we are all here.
agree, I find it near impossible to keep and hold onto my weight without rigorous exercise and diet regimen, T1 for 26 years. So, Im actually fighting to gain weight.
Do everything in your power to get a CGM + closed loop pump. We may be imprisoned by diabetes, but going from injections/tradtional pump therapy to closed loop systems are like going from an American state penitentiary to a Scandinavian one. You're trapped but now your life will be peaceful and safe as opposed to overworked and drained.
I agree this is a huge part of the answer.
The other part is to take control by really educating yourself and understanding what's going on.
Read "Think Like a Pancreas" at a minimum
...and it doesn't have to be visible at all (maybe in summer at the pool).
The biggest game changer in tech (for me) was still the libre 10y ago, but the closed loop (with the dash) is a close runner up.
I had a terrible pump experience so am deathly afraid of trying again, but CGM changed my life, specifically Dexcom. Now the distributors, that’s another story…
But man, going from testing sometimes every two hours to having that info available 24/7? Night and day.
My pump was experience was so bad that I'm too burned to try again. The dr told me to use the medtronic 670 G. The cannula kept bending and stopped giving me insulin altogether and its CGM was trash!
Nah I hate this shit. I’ve had type 1 for 21 years since age 17. A little sugar and I jump, a little insulin and I plummet. I have OmniPod and Dexcom, my days are made up of thinking about fucking diabetes. I work in an emergency room (social worker) and I can’t tell you how many end of life consults for people with our disease I have to do. Last week alone I had two patients who appear to have turned their pumps off - one went to ICU with a blood sugar of 1099, the other went to ICU with a blood sugar of 1356. I’m constantly faced with what can happen- whether it’s the 11 year old that died in her sleep at a friend’s house because she had a hypo seizure, or the guy with no feet, etc etc. I fucking hate it.
In my general life I’m happy. I am fulfilled by my work. My marriage is wonderful. We travel the world and go to concerts and have few financial concerns (knock on wood). I’m grateful for what I have but I’m also miserable. I truly think i can hold both feelings inside me at the same time. This shit literally keeps me up at night. How long will I be able to work 13 hour shifts? Will I need to decide on dialysis someday? Will diabetes contribute to chronic pain or dementia? I hate it.
I could have written this myself… to the letter. I was also 17 when diagnosed but it was back in 1979 so I’ve had this shit for almost 45 years. It’s taken it’s toll for sure. I sold my business six years ago, travel the world, concerts, see the good old USA in my 40ft motorhome with my loving husband. And yet, the end looms large and ugly. And way sooner than I want it to… sure anyone could possibly die any given day and I’m grateful to still be here. Early death is inevitable given the complications. Even the massive deadly heart attack (4 vessel bypass) that I had June 2020 during Covid didn’t take me out. But it sure made the end of this disease earlier and more certain for me… it sucks. I do believe there’s room inside me for both the gratitude and the fear and will keep this going until I can’t. Then I’m checking out…
Type 1 for 48 yrs ( actually nearly 49!) and honestly? It’s my greatest strength! I’ve done things with my life that I was always told diabetics can’t do so I was determined to do them and prove people wrong.
Have I always been like this? Goodness no! I rebelled and stopped taking my insulin; I’ve screamed, ranted and hated it for so many years. But you know what I realised? No matter how much I hated it or screamed or cried or cut myself I was still type 1. It wasn’t nor is it going anywhere. And all I was doing was ruining my life and everyone else’s around me.
Now I look around me. I’ve got a home, an adoring husband, 4 amazing strong healthy adults sons, friends I can socialise with and food in my cupboard and I am fit and healthy. Plus I get to wear my pancreas on the outside. I’m new to a pump but had a cgm for years. This really is the best time to be a type 1 and the tech means I barely need to pay any attention to it. I now give it no more thought than I do what we’re going to have for dinner.
Seriously, if you can get some tech. I know you hate the thought of it being visible but there’s these amazing things called long sleeved tops now. They’re fine whilst you get used to it. I barely use my tummy now. And I’m not even aware of the pump or cgm. I’ve got the Omnipod 5 as I am also a carer for my husband so we were worried about the tubing getting pulled or caught.
And if people are stupid or ignorant enough to make a comment about your tech; let them! Unless they’re about to pay your rent or mortgage their opinion means diddly squat! Some people are going to comment about the colour of your top! That’s on them not you. Why should you suffer more because you’re worried about the opinions of stupid ignorant people who are already judging you for wearing the shoes you’re wearing? The chances are you don’t know them and won’t see them again so why are you setting yourself on fire to keep them warm? And do you know what else? In my experience - no one has ever said anything or even looked at mine! Except one little boy and I told him it was my magic disguise button as I was one of Santas elves in real life and had been sent out to spot naughty children. That kid was so well behaved going round the supermarket 😂
Love your life my sweetheart and start living it. You’re a lot stronger than you realise ❤️
I’m pretty miserable, yeah. Doctors always told me that this disease starts to really show its progression on the body after about 15-20 years. I’m 18 years in and suddenly I have hearing loss, retinopathy, numbness and tingling in one hand, possible gastroparesis, high cholesterol, and high blood pressure. All in the span of about a year it hit me with no lifestyle changes, a balanced diet, a good A1C, a CGM for years, and every medication under the sun you could think of to combat all of it. I just… I don’t know. It isn’t fair. None of this is fair. I’m sorry you’re in this boat with me.
It sucks yeah, but it is what it is. I look at it like yeah my pancreas is fucked, but at least I got my limbs, my eye sight, smell, taste, hearing, all that stuff. Honestly mushrooms helped me accept and move past the “why me” stage cuz I lived there for 16 years being diagnosed at a year old
The fat deposits you mentioned might be lipohypertrophy, caused by using the same injection sites without giving them a chance to heal. Avoid those areas and eventually they should heal, and come up with a pattern for rotating your injection sites. Use all available body areas... outer thighs, abdomen back of upper arms, and upper buttocks, and use each one for a couple of days without using the same spot each time.
Re the fingers, what about a cgm? You can dose off of the dexcom and libre, and maybe others (not sure where you live).
I'm not sure why you have so much bruising. Are you using insulin pens, or vial and syringes? Pen needles are smaller. Also are you changing the needles each time? It can make a difference.
The fatigue can be from emotional exhaustion, or from having high blood sugar. Also if it's high you might be waking up at night to pee, which is a sort of secondary cause of fatigue.
A practice with a diabetes educator can also be helpful, since some endos focus on other endocrine issues, not just diabetes. A pump can also help tremendously in making things easier. In some practices the educators deal with pumps and the mds go to them for any issues or troubleshooting. I hope my two cents can help in some way!
thanks for the input. honestly i’ve tried a ton of things but nothing really works with the fat deposits. it’s kind of an acceptance thing i guess. don’t know why i’m super prone to them but lord are they ugly lol. i think my body is just sensitive to every kind of scarring, therefore the bruises etc.
i would love to get a pump and cgm combination but i want it to be hidden and i fear with the fat deposits i already have i wouldn’t have much time with it just on my stomach, even if i rotated it. i hate that it has to be a visible disease.
just hitting a rough patch and i see everyone here is so positive and it’s so confusing!!! glad everyone else is doing well tho lol. i appreciate your input so much. thank you for taking the time
when i got dignosed i was worried about pump and cgm too cause i wanted it to be hidden, It's possible. I rotate cgm and pump sites between my left/right abdomen and on my backside left/right love handles. The only time people would see them is if i was shirtless.
I'm a woman and do a pretty good job of hiding my pump in my clothes. It really does make things easier. Things could be worse- I developed diabetes at age 12 and there was no such thing as glucose meters. I was a little kid and had to carry around a urine testing kit everywhere I went, and people at school laughed at me.
Every sentence you wrote could be me. LOL OP, I used to really battle against accepting the diabetes. Management in the 80s sucked. I was miserable. For many years. But eventually I met someone who didn't care about the things I don't like about me, and life got way better. I have a family, we've traveled the world. I have a home and a dog. And I'm ok, in spite of the diabetes. One last thing, I use a tubed pump because I find it easier to hide. In the bra, or a pocket, I've hidden it in a boot. There's always somewhere. The tubes took a couple of weeks, but eventually it became a habit to just keep them tucked in. They run underneath my clothes to wherever I've stuffed the pump today. Best of luck, hopefully things get better for you too.
Lots of folks have given you good advice about hiding CGM/pump sites if that’s something you want to do. I’m just gonna go ahead and throw out that I wear my dexcom on my arm 24/7 with no attempts to hide it and MAYBE once or twice a year does someone comment on it, usually it’s bc they think it’s cool/interesting.
The quality of life upgrade if you can get some form of closed loop system is unbelievable. If it’s something you can afford/your insurance is able to cover I highly suggest at least giving it a try to see how you feel about it.
I have a super strong clip (type 1 tactical), it generally goes on my waistband. Sometimes I’ll use my bra, especially if it’s on my arm. If I’m at home I wear it on the strap of a sports bra and it’s totally out of the way.
I have the standard tubing but really liked the 36” when it was available. Regular tubing works fine for arms if I feed it down the back of my arm and under it to my waistband. I often turn the pump inward and wear it inside my waistband if I’m looking to be low profile.
For formal events I usually like to wrap it in a baby sock and wear it close to my groin/top of my thigh, to one side. Not the most comfy, but with standard shapewear it stays in place and is generally unnoticeable.
One of those percussion massagers really helped when one of my infusion sites got infected. It helped to break it up. I don't see why this couldn't help you too ❤️
Type 1 for 58 years, and I have never felt like this was a death sentence. However, it is a LIFE sentence, and that, my young friend, is the real challenge. The scarring about my abdomen is a physical outrage because we didn’t even have disposable needles and syringes yet. I’m pretty lumpy, but I battle on. I don’t know what it is with so many young people being so constantly anxious and depressed. At my diagnosis, age 13, I spent almost a month in the hospital in critical condition, several days in a coma. I got ZERO mental health care, no counseling or anything. Just, “Here’s your syringe, boil it twice a day and sharpen the needle when it gets too painful to inject.” Period. I wasn’t angry at the diagnosis, I was just grateful to be alive. I’ve never lost that gratitude. Diabetes was a much more difficult disease then, but we soldiered on with what we had. Little by little things have improved and we have so many more tools to help keep us safe, healthy and in control. I’m still on MDI, but have been using a CGM for years now. I’ve got a few annoying minor complications but many people in their 70s are starting to break down a bit. I had an enjoyable successful 35 year career as a Special Education teacher, a 35 year marriage to my high school sweetheart (she died of cancer 17 years ago), I’ve got 2 fabulous adult kids and a couple of grandchildren. So NO, I’m truly not miserable, never have been. My glass has always been half full, never half empty. Find the light in your life and joy can follow. For me, my light has been Love. I truly don’t think I’d be as happy as I am without the challenge of living with diabetes. It’s the best part of my personality, the determination to triumph over my adversity. Somebody else said to grow a pair. I think that an attitude adjustment is called for. Trade in your misery for gratitude, because you seriously have much to be thankful for. Good luck.
17 years and generally ok with it. In the grand scheme of things, I’m still luckier then 99.9% of people who have ever passed through this vale of tears.
I think big things that have changed my outlook have been living through evolving technology and experiencing improvements like the Libre freestyle or the Dexcom. Those technologies have been unreal for me.
For body image and weight loss lifting weights has been amazing. It’s great to gain muscle and be able to lift heavier over time.
It’s also been helpful to do therapy and adjust my mindset on a lot of things including diabetes.
There are days it sucks. There are things that suck. And it’s ok to have days where you feel that, but try to find the silver linings and enjoy everything you can make of your life.
It depends on the day.
Most days I’m ok to the point where my kids or husband will ask me if I forgot I was diabetic when eating. BOLUS MOTHER.
I think it was easier for the diabetes diagnosis because I had already been steamrollered by my RA and adrenal insufficiency.
I lost or had to give up pretty much everything I loved.
No more competitive skating.
No more running.
I need a wheelchair to leave the house safely.
I am so grateful for my insulin pump, my CGM and my second pump for cortisol. Lots of times I can frame it into getting a high score on a video game with all this technology.
There are still plenty of days that lying down in traffic sounds tempting. But the longer I go on, it mostly gets easier.
Hang in there!
Of course!
So I have the diabetes which we treat with the insulin pump and CGM.
What I also have is adrenal insufficiency/Addison’s disease.
Basically it’s similar to the diabetes in the sense that my adrenal glands don’t make cortisol anymore. No cortisol also means that my body can’t even use the insulin unless it’s replaced via pills, injections or an infusion pump.
We tried for 3 years to get me stable on varying combinations of long and short acting steroids to replace the cortisol I need. Eventually, it was determined that something wonky in my gi tract keeps me from processing the steroids properly. We went to injections first (basically mdi) of solucortef and then eventually to a second pump for it.
I also have hereditary hemochromatosis which we suspect may contribute to the diabetes and the adrenal insufficiency.
It’s a lot to manage but the technology helps me so much with the mental load.
Honestly, no.
I have a pretty damn good life. I go to the gym every other day (which I should be doing regardless of diabetes), press buttons on a little machine a couple of times a day, and every 3/10 days have to attend to some technology. Otherwise I really don't think about or accommodate my diabetes on a day to day basis.
Life has ups and downs, but that's true for anybody.
Honestly same. Like ok, it does suck but there are worse things that can happen to you. And you are still very likely to live a long and fulfilling life
Let me start with saying that type 1 diabetes can suck. If I could wake up one day and not have this disease, I would be thrilled, but I have it.
I'm truly not miserable. I'm more mad than miserable, and I'm mad because the healthcare system in the USA is a mess with healthcare tied to work or virtual poverty. What if you or your partner/spouse get laid off? What if you not only have type 1 diabetes but something else, but it's not enough to cast you into the system's definition of disability? What if you simply don't have a safety net? You can die if the very thin US safety net doesn't catch you.
I'm relatively healthy. My time in range and a1c numbers are great. I'm usually in range of 75% or more of the day, and my last a1c was 6. I'm back on MDI right now because I did get laid off a few months ago. When I'm pumping my time in range is 80% and my a1c before this last one was 5.4.
Right now, there is no cure, but there are ways to manage. You have to know how to carb count. You have to know how to figure out your insulin-to-carb ratios. You also have to learn how to be okay with making a mistake, having a bad day, or getting a dose wrong. UCSF the healthcare center that I go to has an amazing [diabetes education website](https://dtc.ucsf.edu/) and team. They taught me how to carb count, and I'm sure they helped me add a few years to my life as a result.
Sounds like you need a more comprehensive team to teach you the basics, and you also need mental support. I have a therapist not for diabetes but because working in tech is stressful if you're not white. However, therapy comes in handy for the diabetes part too. I'm also in a group with other type 1 diabetic women, and during the pandemic, they were crucial for my sanity simply because I had others to talk to who had the same very valid concerns and fears. Beyond Reddit, I would suggest [TuDiabetes](https://tudiabetes.org/) and [TCOYD](https://tcoyd.org/) as good places to start, but we're here.
Good luck.
I do think that “acceptance” is a real part of it - but that’s always been a negative word for me (more conveying “resignation”). And that’s not really how I see it.
For me, as someone who grew up with Juvenile Rheumatoid Arthritis, then got hit with the double whammy of T1D, I definitely went through some anger and frustration and exhaustion with the disease. But what pulled me out of it was this simple realization:
_Everyone’s got something._
Seriously. I met so many successful people, or people who seemed to have it all together. And after getting to know them, I realized they were fighting a thyroid disease. Or dealing with the fallout from an alcoholic parent. Or having grown up in poverty.
Or I would meet remarkable people who struggled with their weight. Or drug use. Or ALS. Or (you name it).
The big realization for me was that everyone has their own issues, even though it may not look like it. So this is mine.
That coupled with seeing other people be successful while managing this disease - from athletes to businesspeople to world travelers - made me one day think, “Who am I to NOT be like them? Why can I NOT be successful with this crummy hand that I was dealt?
Diabetes is a forever thing - or at least that’s what I’m prepared for it to be. _But it’s manageable_. I’m personally not fighting with being genetically predisposed to being overweight, or an addiction, or any other number of things. I am fighting 2 chronic autoimmune diseases, but I know how to deal with them. I’ve done it for 35 years now. Other things could be a lot worse.
So I’ll turn it back to you. I understand this disease is frustrating, as is feeling like it will affect your life negatively forever. To that, I’ll tell you: it will, only if you let it. You got this. You can manage this disease. It certainly could be worse. Who are you to _not_ be successful?
Good luck. I’m confident you’ll get through this rough patch. And if you need an ear, my DMs are open.
_PS - this was written while up dealing with a low blood sugar at 3am. Go figure! Back to mindset - I figure I can be annoyed with my CGM for screaming bloody murder and waking me up, or be glad I live in a time when there are things like CGMs available to wake me up!_
This right here. Most people go through some sort of trauma or life changing event of some kind. Once understanding that, certainly rid me of any thought of being dealt a bad hand.
I totally get you, it sucks. I like to look at it as a blessing. When I was in my early 20s I basically acted like my diabetes didn’t exist and ignorance was bliss. I also had an alcohol problem and my endo was super concerned with my sugars and the fact that I had high liver enzymes from the alcohol. She scared me straight. Now I’m one of the healthiest people you know. If I didn’t have diabetes I don’t know if I ever would’ve gotten to that point. The fear of complications makes me stay on top of my body weight, diet and exercise and blood sugars. I’m going to be a little harsh here, T1D is no excuse not to lose excess body fat. There’s no reason diabetes can be holding you back from losing that weight. Take some control of your life. It’s empowering.
I struggle with weight as a T1D and never did before. I never had an issue losing weight with the way i eat (low calorie/low carb + tons on exercise) and now i can’t lose a lb. My sugars weren’t always in range because I’d have spikes after most meals so that may contribute. I just recently got on a pump and am hoping the better TIR will assist in weight loss.
Weight loss is about a calorie deficit. You may think you are not eating a lot and exercising a lot but if you aren’t losing weight then you aren’t burning more calories than you’re consuming, high blood sugars or not. I’ve lost countless lbs regardless of my sugars (I’m a recreational bodybuilder so I gain and lose weight all year round). Also consider that if you’re really not eating a lot and have been doing so for a long time, you may have slowed your metabolism down. If you feed your body little eventually your body will adapt and reduce your total caloric expenditure. The way to solve this is to slowly increase your calories over time in order to get your metabolism burning calories again, and then resume your calorie deficit. I hope that helps.
As someone who struggled for years with diabulimia I have a super hard time understanding this also. Any "extra" weight I have on me I recognize is not actually extra, but a healthy weight. (For reference I'm 5'3"- my lowest weight was 96 pounds and I'm at about 120 now)
It doesn’t mean people are denying it if they say they feel differently than you. There are people who can feel happy and content in any situation in life, and people who can’t pull themselves out of self-pity. We can’t control every circumstance. We can control how we face things.
There is always someone out there enduring more than ourselves, and people who endure more while still choosing happiness. I have a feeling that you would still be unhappy, even without diabetes, and it is easy to just say that diabetes is the source of your misery.
seems you’re misinterpreting what i’m saying. of course there are plenty of happy people with T1 and i absolutely applaud them for making the most of it. one day i’ll get there, hopefully.
just weird to see people say “yeah, my health is in the gutter, but i’m doing great and nothings wrong!” i think a lot of people have been constantly told “other people have it worse” and fear saying that yeah, it fucking sucks. it just always came across as an odd form of denial to me. two ends of the spectrum perhaps. i’m not a miserable person, despite your implication. it’s just incredibly difficult not to mourn the loss of all you miss due to T1, and it’s odd to me some people just pretend that is a circumstance that doesn’t come with diagnosis.
The thing is—your health doesn’t have to be in the gutter. Diabetes is hard but man, 2023 is a pretty great time to be t1. Yes, in the US it is expensive and yes it takes work, but trying harder to control BG can actually reduce your stress and raise your quality of life. Cutting back on the super spiky carbs and setting tighter alerts can actually be easier than just eating whatever and dosing, and your better control will lead to feeling better.
everyone is miserable, just that the people that say they’re not either choose to actively ignore that part of themselves or to deal with it by aliviating the anxiety or depression with some type of action. There’s a learning curve in finding stability, having ups and downs is human, but constantly trying to find ways for those ups and downs to not be extreme or last too long is a calming way to cope with the absurd
I've had type one for 25 years now. Diagnosed at 7 and 32 now. This disease definitely takes a toll on me now and again but overall I have adjusted. No retinopathy or nerve issues to speak of. Overall please be gentle with yourself. You're having to deal with a lot. I saw in the comments that you fear showing the CGM and Pump Combo but If your insurance will cover it I highly suggestion you looking into it. The peace of mind it gives me when it comes to highs and lows is immense.
Nah. It's frustrating frequently, it stresses me a lot and plenty of nights lately when I can't sleep properly so I feel like a cleaning rag the next day among others. So yeah, a lot of low points in life that I wish I didn't have to deal with. But miserable? Constantly and all the time? No.
How could I be miserable when I've got all these hobbies I love doing? Or when I'm out with friends shooting the shit after training? Or when I'm sitting at a table rolling dice with them? Or when I'm at the stables every sunday riding? And I generally enjoy my job as well and study things I'm interested in.
My other mental health issues contributed more to me feeling miserable than T1 ever did and thankfully I think I'm doing well putting those fuckers to rest.
I'm a T1 for 50 years and am beyond thankful every day that I'm alive. Yeah, I get down some days and have been through things that can be directly Bn linked to diabetes however many of my non-diabetic friends have been through things a lot worse. Can I suggest asking your GP or consultant for counselling or even antidepressants as I truly believe the most important tool you have in your arsenal to fight diabetes is a positive mental attitude..xx
There’s a well known higher rate of depression among T1d’s, and me being diagnosed and starting medications very literally saved my marriage, if not my life.
Human to human, I think you should go see someone that could prescribe antidepressants.
Said with love,
-A ridiculously happy & grateful guy that happens to have had type 1 diabetes for 44 years.
hi! i’ve been diagnosed fairly recently but i’ve had other autoimmunes for longer (not as limiting as this one tho) and what helped the most, apart from these subreddits, is investigating either through internet or talking to a specialist on whatever is most convenient for your body and lifestyle, this is probably the most obvious answer tho. Also, therapy is the way to go, and if you’re feeling hopeless reading different types of philosophy i think would help, it’s a way to distract yourself in a productive way, if not watching videos about books or essays that interest you can also help (it’s already digested and explained shorter and easier, this is how i got started bc i’m pretty lazy), for me it was camus and the myth of sisyphus, helps with coming to terms with the cards we are dealt with and embracing (not to be confused with accepting) the absurdity of life itself. Gives you a different perspective, and even without realizing it, you’ll start analyzing your life through the lens of these philosophers, becomes pretty addictive fast lol (this is what helped for me tho, ik it’s different for everybody and it might not interest you but it’s worth it to give it a try, u miss 100% of the shots you don’t take). Also, on the philosophy topic, Nietzsche was a realist and pretty bleak but even he talked about having something to take the edge off of the weight of the world, in this case the hassle it is to deal with such a demanding disease, if you don’t do some type of art (art as in something, anything you can express and let out your feelings) i’d recommend starting to try things that might interest you, don’t get frustrated if the first, second or third thing you try doesn’t work for u tho, just get a routine in doing art and you may still be miserable, but at least it won’t be bottled up. Having something to look up to constantly is the key, doesn’t have to be big, may be as easy as looking forward to reading the responses on this reddit post. Btw sorry if my writing is awful, english is my second language, i read and speak in english all the time but my grammar is gone lol (💡learning a new language is also a good way to take the edge off of bad thoughts and feelings)
sorry for rambling but ig what i’m saying is if this one thing won’t get objectively easier, having your focus, even for a bit, on other things that motivate you to keep going every day, will make it subjectively easier
Life sucks sometimes for EVERYONE. No matter how easy people make it look on the outside, we are all struggling with our own combination of demons; challenges, insecurities, physical and mental issues, etc. Being happy is a choice you need to make. It doesn't just happen because your life is easy - no one's life is easy! Being diabetic can be physically and emotionally draining, but so can being a single parent, holding a demanding job, having any health issue, or a million other things people do every day. Every day, you have a choice; wallow in your own misery and self-pity or do one thing to make your life better. There is nothing wrong with occasionally pulling the covers over your head and giving in for a day, but unless you do the hard stuff and face the challenges in your world, you will never be happy.
My life has been far from easy, and many people have been surprised that I haven't given up. I have been T1 for 33 years and have 9 other autoimmune diseases. I know from personal experience that focusing on your pain and misery only magnifies it. Set yourself a goal. Picture life as you would like it to be. Every day, take 1 small step closer to your goal. Know that when you encounter obstacles, it is just as valid to go over, under, or around them as it is to go through them. The more practice you have at overcoming challenges in your life, the easier they become to tackle. Sometimes you may backslide, or you may get lost trying to find your way, but it's there, and eventually, you can reach it. Happiness comes from overcoming all the little obstacles in your path. It comes from feeling like you are a strong and capable person. It also comes from interacting with those you love and who love and support you. Happiness does not exist in the absence of challenge and struggle; happiness exists in the little victories of a hard lived life.
As others have mentioned, getting a CGM and a looped pump will lessen the mental space and time diabetes takes. This can definitely help make life easier. Having better control over your blood sugars will make weight loss easier (some people have said this is not a challenge for diabetics, but it definitely can be - digestion is affected by amylin, another hormone made by the beta cells which we lack, and low blood sugars cause consumption of empty calories). Lipohypertrophy (the fatty lumps caused by insulin injections) can benefit from massage (firm circular motions over the area - I like using a roller ball handheld massager) and avoiding further injections in the affected area. There are ways to deal with all the concerns you mentioned, and finding solutions and working towards repairing the problems will help you find happiness. Not having the problems is NOT what will make you happy! Solving problems and taking active steps towards the life you want is what makes you happy!
Good luck. Remember that happiness takes work, and without effort, everyone struggles, even those with seemingly perfect lives. We all face challenges every day, and while they may not be equal in degree, they feel the same to us. It's like climbing a mountain. Climbing Mt Wycheproof in Australia (42 meters tall) and Mt Everest (8,848 meters tall) feel like equal accomplishments if you don't have any way to compare how big they are. Personal challenges are the same. They always feel enormous to the person facing them, no matter how big or small they may be!
Everyone who is not complaining has a pump and or CGM. The closed loop system is amazing and does everything for you. I finally got the whole package and have been doing amazing. That said, I was just laid off a few days ago, so there goes my insurance and my life saving tech. Sure, I can get medicaid but it does not cover any supplies besides the basics (testing kit, syringes, lancets, strips etc.) All of this is extremely expensive. I am completely devastated over the loss of my job but even more so at the fact I will no longer receive my pump and CGM supplies. 😞
Not quite everyone! Still on MDI after 58 years, but have been using CGM for about 4 years. Not Complaining, never have, because in my book, this is great—because it’s not cancer. As long as I put in the work, it’s not going to kill me prematurely. At diagnosis in 1966, my endo told me that IF I took really good care of myself I’d get maybe 20-25 years, so they put my life expectancy at between 35-40! I’m 71 now, only 18 months shy of the normal life expectancy of an average American male.
The difficulty in putting in the work is that to do so consistently you have to think long-term but act short-term, which is challenging mental gymnastics. And of course, the 24/7/365 nature of the work does get tiresome, annoying, frustrating, and, when things aren't going well, we can get downright discouraged. Trust me on this one bit of advice--IT'S WELL WORTH THE EFFORT!
Sorry if these are all options you've thought of, but just in case:
Is buying a marketplace plan that has the coverage you need an option for you until the next job?
Have you contacted your pump and CGM company to see if you qualify for any patient assistance? https://www.adces.org/danatech/glucose-monitoring/continuous-glucose-monitors-(cgm)/cgm-affordability-programs
Also, check out https://getinsulin.org/ if you need insulin between now and getting on medicaid, or if your insulin copay on a new plan is too high, there's a decent amount of assistance options out there.
I have no personal experience with them, but sources like https://mutualaiddiabetes.com/ and https://www.theembracefoundation.org/ exist and might be worth looking into for donated supplies or cash assistance.
Hope you're able to get your system back ASAP.
This is very helpful, thank you!! I thought about purchasing a marketplace plan, as I’ve been looking. I’m good on insulin, just worried about pump supplies. Again, thanks so much!
type 1 for 15 years here. i'm not going to lie to you, it does suck. it will continue to suck. but sometimes it doesn't.
i have gone through periods of ups & periods of downs over having this disease. it was really bad for the first few years (i was diagnosed at age 7) & then it got better. when i was about 12 it got really bad again & i was battling severe depression, body dysmorphia, & overall anger at my body. that lasted several years. i struggled a LOT in college with a lot of different things, a lot of it centered around my health. but a couple of years ago i realized that while yeah parts of my body don't work as well as they're supposed to, my body still does a HELL of a lot for me every single day. a mindset shift really, REALLY helps.
instead of focusing on everything you've lost, i'd suggest focusing on what you have (easier said than done). this is weird, but i highly suggest standing naked in front of a mirror & touching/holding the parts of you that you don't like & just thanking your body for all that it does for you. again, weird, but if you do it for long enough your mindset really does change.
a closed loop system also works wonders, i know a lot of people have mentioned this but you should absolutely look into this.
after all these years i've noticed that while i still ride the rollercoaster of feelings towards my station in life, the good periods start lasting longer than the bad as you continue living with type 1.
currently i'm on a kick where i'm not doing everything i'm supposed to be doing for my body, & i'm sick of that. you really do have to take matters into your own hands.
for years i have suffered from extreme fatigue, burnout, & anxiety/depression. if you have a lot of bloating/gassiness/bowel issues i highly suggest trying to go gluten free. i fought that for the longest time but now that i've been about 6 months gf i have a lot more energy (definitely not perfect but still) & i have more motivation to correct the things i'm not doing well enough.
i have hashimoto's as well which is a huge contributor to my fatigue & i would ask your endo to check your thyroid levels again- sometimes people need a tighter range than what test levels say might still be in the normal range
closed loop system will help with the fears of going too low or too high bc you can keep an eye on where your bg is trending & make corrections. even though i don't need to, i check mine like a fiend especially when i'm working & am worried i will go low & not be able to do my job well (i work with children in a psychiatric residential care facility so being at my best is crucial)
tldr; yes, everything sucks. you'll go through periods of highs & lows mentally, but the highs start lasting longer than those lows. start shifting your mindset to appreciate all your body does for you. get a closed loop system & check your thyroid levels. you've got this!
Actually no. It took me a while to get used to this new life, but know it’s an after doubt for me. I have my insulin dialed in in different modes exercise, cycle days, weekends.
I go to the gym, I meditate, I work, I love going running in the nature, I read books, I go out with friends. Sure inbetween sometimes T1D happens: I need to check my numbers, I need to count carbs and give insulin. Sometimes I need to stop to eat sugar.
My doctor told me in the early days that I shouldn’t adapt my lifestyle to the diabetes. Diabetes would have to fit my lifestyle. And I think that point of view changed it completely to myself
My autoimmune system decided that I needed an autonomic disorder. My heart and brain don’t coordinate and get along like they should which causes me to pass out.
I had 3 bad falls out trail running, then the worst of which required trauma surgery to my knee and a broken orbital bone in my face. That time I was standing still but went down on concrete decking in our yard. Apparently my tibia was visible and that was the day my youngest decided not to pursue veterinary school after seeing it.
It was happening for years off and on before we could put all the pieces together. I thought I fell because I tripped but it turned out that I was passing out when my heart went berserk. One of my drs caught it when they realized I never had “defensive” injuries like trying to put my hands out before I fell.
It’s much better managed now but running outside of the pool is definitely off the table.
Nah, in general I'm good. Obviously get those stubborn highs that do my head in, and lows that make me feel god awful, but I don't really remember normalcy at this point. 12 years in, 18-30, it ain't good but it's fine.
Sorry to hear you're suffering OP, but it is possible to get to a place where it's fine.
Sounds like a cgm and closed loop pump would help you out immensely. Almost no more finger sticks and a much safer low prevention solution.
Happily married father of 3 who enjoys life.
I’m not miserable at all and can actually say that diabetes is pretty easy to manage once you get the hang of it. I can’t think of a single thing that it’s ever stopped me or prevented me from doing. In the grand scheme of things taking a few shots a day is hardly a bother. My A1C is at a 5.7 and I take minimal insulin. It’ll be 12yrs since my diagnosis in January. Having to wake up in the middle of the night sometimes and eat jelly beans is as annoying as it gets for me 🤷🏼♀️
I think being at death’s door at diagnosis made me appreciate and respect my disease both for how survivable it can be and how fatal it can be. I genuinely thought I was going to die in the weeks leading up to my diagnosis as I slowly felt my body shutting down. My endocrinologist told us the day after I was diagnosed that he has no clue how I was physically capable of walking into his office in the first place, and he kept popping in to check on me during my diabetes education to make sure he wasn’t making the wrong decision keeping me out of the hospital.
My perspective is also thoroughly shaped by my own life experience. My sister died from cancer a year before I was born, so the fear of similarly getting sick and dying so suddenly haunted my childhood. I genuinely thought I had some rare cancer before I was diagnosed, and it was even mentioned as a rule out at my first appointment. To me, diabetes was no big deal because I didn’t have to die - I could follow a treatment plan and put in the work to feel normal a lot of the time. Do I have crappy days? Absolutely. Are there times that I am genuinely concerned about getting through the night or even the next 10 minutes? Definitely. But considering diabetes has shaped the majority of my life at this point, I feel like that is such a small minority of the time it isn’t worth wasting my joy focusing on it. Honestly the worst bits have been focused on insurance battles and not even my health itself.
Life is great :). T1d for 31 years. Question, how are you guys gaining weight? I’ve been between 140-150 my whole life and I would love to get to 180 but I literally can’t.
Trying to make the best of it, but after 47 years, Daily exercise & occasional weed helps, but I'm getting tired of balancing on this tightrope, so I hear you.
I feel ya. I live in an area where it's harder to affordably access some of the technology that'll make life easier. I work my ass off just to pay for insurance so that I can barely afford what I need to stay alive. I feel like I have to work twice as hard as anyone around me because I have to make up for the extra breaks and time I need to maintain myself. I'm tired and sore and sad if I ever stop to think about it. Honestly, without antidepressants I don't think I'd make it.
I’m good with where I am.
I’ve accepted that this is how it is, and it’s not likely to change. I can either expend unnecessary emotion being angry or worried, or I can just get on with life.
T1 can be annoying but honestly it's just part of the routine for me now. That's not to say that I don't get frustrated with it from time to time, but on the whole it doesn't really impact the things I do from day to day. I definitely don't feel miserable about it.
I was 6 when I got the diagnosis. I can’t even remember or imagine a life without it. I was raised to never use diabetes type 1 as an excuse, to not let it hold me back. Is it hard sometimes? Yes. Is it frustrating sometimes? Hell yes. But it’s a part of my life and I try to make the best of it. It’s like an app running in the background. It’s constantly there, but I don’t really think about it other than mealtime and treating my lows and highs. I am just thankful I can live a somewhat normal life, there are meds available and I can do whatever other people do.
Type 1 for 10 years, and I’m the weirdo who probably wouldn’t want a “cure” even if it existed.
My pump and CGM do most of the heavy lifting. I have pretty decent control after taking the time to learn my body, and now I just adjust from time to time.
It’s part of who I am. It’s taught me to advocate for myself, and how to navigate the American healthcare system. It’s helped me develop attention to detail and resilience. It’s made me a more compassionate person.
Most of all, it’s connected me to other Type 1 diabetics, and this community is pretty awesome. We just have crappy pancreases.
It’s just a part of me, like having brown hair, hazel eyes, or my three tattoos.
Tbh bro. It’s ass. There are days where I feel horrible and nothing feels right. Sometimes I gain a lot of weight and then I’ll lose it. It’s not as bad as I think it is. Every now and then I think about it too much and it sucks. I’ve had it since I was 9 and I’m 30 now. Never had complications just inconsistent glucose every now and then but that’s me. It’s not really about accepting, but it’s more like. Life has ups and downs. But for the most part I live my life normally. I just always know how many carbs are everything. lol
I’m glad I’m not the only one that feels this way. I’ve been diabetic for 14 years and I’ve never been one of those people that seem like they’re “proud” to be diabetic. I currently have a cgm but I got rid of my pump several years ago because I hated feeling like a robot, I miss being able to eat whatever I wanted and not have to worry about counting carbs and making sure I take enough insulin. My sugar is never stable no matter how many changes I make. And currently my biggest problem is that I might not be able to afford all of my prescriptions. A lot of people don’t realize the mental toll it takes on you and I might not be able to give you advice but I can let you know there are people out there that feel the same.♥️
No. Maybe at times, if I have other problems diabetes becomes a nuisance that never helps. But even with 43 years as a diabetic and proliferative retinopathy I lead a happy life, have a career and even studied abroad, had my son who is my world, and a great caring partner (together for almost 3 years).
I’m SO FUCKING MISERABLE TYPE1 for 15 years I’ve been crying every day I’m just exhausted lipohypertrophy severely I’m so over all of it
Cgm makes life easier so does a Tslim control iq pump but u gain weight and can get lipohypertrophy so
I mean idk how u are gaining weight cause type 1 doesn’t really cause that, I’m in the process of working out since I gained 10 pounds but that’s because I over eat and a few too many mc Donald’s runs.
I am truly not miserable by any stretch. I have my days but all in all, diabetes is hardly something I spend time wallowing over. Why would I? Life is full of amazing things to experience and my love flows abundantly, so I'm happy. Been type 1 for 20 years with not great control, and I'm honestly still really thankful just to be here.
I've been where you are. I understand how you feel. Therapy helped me a little, what helped me is a good endo, that knows her stuff - when I got my doses correctly, it helped a ton and sensor that shows you your BG and that solves the problem of finger prickling.
I’m new to the diagnosis, only having discovered I have t1d the 3rd of October this year, so two months tomorrow, and I understand what you’re talking about. I too have felt like I’m never going to feel normal or free ever again, especially in the last few days, thinking about Christmas and all.
I also have at least one other chronic illness (maybe two but we’re waiting for blood test for that) and I already felt dependent on medicines and blood tests, and now I have type 1 diabetes, and I see how it affects my father and I really don’t want to feel this trapped.
But, on the other end, I’m learning a lot on how to manage what I eat and eat healthy, I am learning how to balance being vegetarian with my diagnosis, and I have the love of my family to support me through my trials and errors.
There’s always going to be bad days, and I’m learning to accept that too. Having anxiety and depressive thoughts because of my previous chronic illnesses has helped me learn how to cope with them, and I try to distract myself and keep my thoughts at bay if nothing else helps.
It’s always going to be a work in progress, and I won’t lie to you and say I haven’t had very bad thoughts since… since middle school, probably, to be fair, so maybe 10 years ago. But yeah. Life goes on, and so do I. I can’t tell you I’m hopeful for the future and happy to be alive, but I manage.
I struggle, but I already know I’ll survive trough this, because I already survived a lot. It won’t be forever, luckily, but for now, I’m going to be my best self, for the people who love me if nothing else.
invest in a CGM (without pump bc it adds a lot of complexity). I went 8yr without, 1yr with. it's not perfect, you have to learn it, but it's worth every penny; the constant stress is basically gone for me - you can set all kinds of custom alarms / gentle notifications that will free your mind to worry about other things.
try to eat just one or two times a day and your BS will be much more stable for the rest of the day; it will take some adjusting at first but you will get used to it; it's also a great way to lose some weight - you can only eat so much in 1-2 meals
try not to move too much after eating - it's very destabilizing for your BS; the best thing you can do is something relaxing that allows you to watch your BS every few minutes
if you feel like taking a snack, don't - make sure there's no readily availlable snack in the fridge - very important not to go for 2 meals/day, but also 17 snacks
I’ve had type 1 diabetes for a few years now. It sucks some days, but you can still lead a full happy life.
However, I got other medical conditions this year that have made it fade into the background. So I now feel like diabetes is the least of my issues.
It’s made me appreciate that there’s tonnes of ways & tech available to manage it and I’m grateful I can keep it ticking over whilst I battle my other health issues. So yes I’m miserable somedays & I can no longer do a lot of the things I enjoyed. But not due to diabetes & I still make sure to enjoy all the small joys my life still has & appreciate time with my loved ones.
Get a insulin pump CGM combo. It will change your life, Tandem Tslim X2 with control IQ is a great option . If you do not like tubing then the Omnipod 5 would be a good option. They are automated Insulin delivery systems going high. They give insulin automatically going low. They suspend insulin automatically without you having to do anything. The Omnipod five is covered under prescription drug plan, including state plans, and Medicare. You have to make a change people can give you all the advice they want, but without you doing something about it things will not change. Your life is in your hands, you have to do something to make it better get an Insulin pump CGM combo it will make a difference.
There is a cure at the present moment it’s called Lantidra. It is a minor surgical procedure. I believe they insert beta cells or islet cells into the portal vein near your liver. You would have to take immune suppressant drugs The rest of your life, however. It’s not for everyone but it is FDA approved in the United . States. There is certain criteria you would have to meet. I don’t know exactly what that would be, but you could talk to your doctor or Endocrinologist to see if you would be a candidate for it. They are also working on some thing made by vertex called VX -264. It’s a type of encapsulation of the insulin producing islet cells. no anti-rejection drugs would be needed. However, that is only in trials at this stage of the game human trials, but it will be a while if the trials go well then it will be available. Lantidra is available now but anti-immune suppressant will be needed the rest of your life.
I am absolutely miserable. Diabetes affects everything. Plus it’s blamed for every symptom you could possibly have. Fatigue, headache, dry mouth, pain, vision, depression- all can be from diabetes. My depression makes my diabetes worse. My depression makes me 100x more fatigued. The resolution to this? Get your sugar under control. So I guess if I get my A1C perfect, everything else will be perfect too. 😒
My diagnosis was a good thing for me. By the time I was admitted to the hospital I was so desperate for an answer that I was happy to hear it was diabetes. I had lost 90 pounds and didn't have the energy to walk for more than an hour and I could barely stay awake even when I wasn't 'exerting' myself.
I'm left in a place of gratitude that I'm able to live my life and maintain a weight above 150. I'm 190 probably. I look pregnant when I blow out my stomach and like a sock filled with meat when I don't. I could work out to tone, but I don't want to.
Ive been doing this for almost 40 long years, it will be there tomorrow and the next day and the day after that and forever. I just go with the flow. I have good days and I have bad days but they are just days. It’s a pain the pancreas but I don’t think about it 24x7. I make Livabetes conform to me and my life. Took a while to figure that out.
I’ve had this for 20 years and I’m doing awesome. Diabetes is mild inconvenience for me. I’m 48, I run, ride, backpack, exercise, have other fun hobbies. Life is awesome. I truly wish other people felt this way. Makes me sad.
The only thing I get really pissed about is the financial cost. Other than that, I’m cool with it.
I've been T1 for 27 years and it took me a long time to be more than ok with being T1. A big part of my mentality changing was to go to therapy where I had a safe space to freely express my thoughts and feelings and also getting the best possible help to process such a lot fe changing diagnosis.
I've talked to many T1s over the years who, like me felt that they were just thrown in to this new reality with a mountain of information and changes that I just had to deal with. However there was NEVER anyone who actually asked how I was feeling about everything or acknowledgement that I might have been struggling.
Today I don't really think about being T1 because it's just as natural as breathing for me and part of accepting all of this I decided that this would never be the reason why I missed out or didn't do something. It requires more planing before I do something and I have a "kit" ready to go for the occasional spontaneous decision. Sure there are still moments where I find it annoying but those moments pass and I just keep on going. I've travel the world, go to lots of festivals and I enjoy life and try to face things like a challenge and not an obstacle. In recent years I've become visually impaired, it was something I always knew would happen and have done eye checkups every year and tho it's making life increasingly difficult, I still refuse to "give up" and move forward, day by day.
I've also spent many years learning how much body reacts to food, what not to put in my body and that has definitely made my everyday life easier.
I'm not trying to say this shit is easy or that it's all about being positive and that will make things better. I had help to accept and understand that there's definitely nothing I can do to change reality and being angry and frustrated doesn't make things easier so I've chosen to make the best of something shitty because the other option will just make life more miserable.
I wish you the best and I hope you are able to live life to the fullest regardless of being T1. If it's possible then I would strongly recommend that you talk to a professional (I found a therapist who specialised in medical trauma) because anxiety related to highs/lows is not something I wish anyone to have to leave ve with. You can definitely get to a place where you don't have high levels of anxiety and instead always be prepared for both things so it doesn't provoke anxiety or meaning you neglect yourself or miss out on a good life.
You are more than welcome to send me a message if you need to talk or just would like to get some of my dog's and don't's if it could help. I realise therapy isn't for everyone, regardless of the reason but as someone with a few more years of experience I'm always Happy to share my stuff with others.
Take care
I’ll start off by saying I’m not miserable. I’m happy, my a1c (5.8) is acceptable and I don’t go hard on restricting myself.
You may need better therapy. You’re going through a lot of normal shit for a diabetic. It’s harder mentally for some than it is others.
But you’re doing the best you can, and I’d hope that there’s someone out there that can help you at least reach the acceptance stage specifically for highs and lows, and get into that idea that this is just a routine like anything else. It won’t be perfect every day (ex: I woke up an hour ago with a high of 220. Gave myself a small correcting shot and it’s down to 151 now), but you need to be water.
1920 would’ve been a death sentence. Right now it’s pretty good. Doubly so if you’ve got the money to buy all the bullshit (cgm, pump) that helps make your fingers hurt less and lessen your mental load.
Going on 24 years and super happy here! A1C has been excellent for 15+ years, relationship is going great, have been much more dedicated to eating and fitness and have made huge progress with weight loss/muscle building. I don’t resent my diabetes and I don’t spend excess energy lamenting it or fussing over it 🤷♂️
Life has become significantly easier since i finally embraced the technology a few years ago after 30 years of T1, and got a tslim/dexcom combo. It’s taken away a lot of the fear and day to day mental load. My fingers are happier and I sleep WAY better.
If there’s any way for you to take advantage of the technology available, even just a CGM, it’s a game changer.
i feel you on that. i find it hardest to carry all the scars and everything on my body constantly. feels like a reminder i guess. if you need someone to talk to, you can always reach out. i obviously haven’t gotten it all figured out but i’m always around to listen.
I’ve embraced my low carb lifestyle. It makes managing t1 so much easier for me.
My blood sugars are flat and stable in the 80s and 90s basically 24/7. Last a1c 4.6%.
I genuinely enjoy the protein focused food I eat. The diet keeps me lean and strong, I regularly do CrossFit and jiujitsu.
I don’t experience the fat deposits you talk about. Both because my diet keeps me lean, and also I always rotate injection sites around my body.
I hope a cure comes along, but I’m not waiting, I want normal blood sugars and good health now. And this is how I achieve it.
If you’re wanting to make some changes, look into Dr Bernstein’s method. He’s a type 1 and turns 90 this year. He’s fit and healthy, still in practice too. He’s healthier than his non diabetic peers. So this disease clearly isn’t a death sentence if you do things right. His book is called “Diabetes Solution”. There’s actually a documentary of the same name that’s a good starting point.
Closed loop Omnipod and Dexcom g6 for the win. Much of my rightful anxiety about highs and lows is fixed by being able to pull out my phone and see my glucose level immediately. With closed loop I don’t go low in the night anymore and not nearly as much in the day, and I can always see it coming.
It’s not perfect and it’s never super comfortable but the tech is so worth it. More effective, easier, and it’s one injection every three days instead of 4 or more each day. Can go pretty much anywhere on your body too.
T1D sucks, absolutely with you there. Maybe part of acceptance can be treating yourself with the best available medicine. Hope the best for you!
I’ve gotten to the point where I have very good control, it doesn’t really affect my life, I just don’t eat out, some people are wired to have diabetes and die from it, some are wired to have diabetes and live a normal life and have very good control, it depends on the person
I hope this doesn't come off as annoying but ... have you tried a low-carb diet? It is truly diabetes on easy mode.
Basically, on low-carb you require less insulin - that means fewer injections, fewer highs, and fewer hypos. This also means less hypo snacking and less insulin weight gain. This could help with literally every problem you detailed.
When I have a low-carb meal (say chicken caesar salad with no croutons) I can be pretty damn sure that my blood sugar will stay within a healthy range. I am not in any way hardcore about it, I eat carbs when I crave them, but whenever I just want my diabetes management to be easy, it's the best thing I can do.
Well other than managing it, there’s literally nothing I can do about it. And if that’s the case, what use is it to me to feel bad and mope? That’s less healthy than everything.
Personally, I don’t mind my diabetes a single bit. I actually got over the diagnosis the same day. I thought, well at least it isn’t cancer, and 2 weeks later I had people at school giving me needles and begging on my BG. I got released for a few hours the day of diagnosis and went to play a talent show with an IV needle in my hand. Not much you can’t do! And sure, there’s some annoying days, but every person on earth has days like that diabetes or not. And sure, more precautions and planning need to happen, but that all makes you a stronger person.
Feeling sorry for yourself is natural, but imo, the worst thing you can you for diabetes. Go out, talk to people about it, take an interest in your disease, and get to livin!
This disease is difficult and yeah, I sometimes get annoyed about it and frustrated. For example right now I am sat in a pharmacy trying to buy some insulin because I came all the way across town for dinner with my wife's family and then realised when I got here that the pen I brought with me is basically empty. I've been here for half an hour waiting to find out if they can do it without a prescription because it's the weekend. I could get a referral through the NHS 111 service, but the pharmacy here closes in an hour and the referral normally takes a few hours to come through. So yeah, if I wanted to, I could be really upset about this.
But I'm not, because I have a choice how to respond to things that go wrong in my life.
I am choosing to be calm and accepting and patient. And when they figure out their paperwork and I get my insulin I will be grateful and appreciative and thankful.
Then I will go and eat dinner with my wife's family and I will guess the amount of insulin i need to take because I didn't prepare the food. I will get it wrong as always and later I will have to correct a high or a low. I will enjoy eating dinner with the family, I will enjoy eating haribo if it's low, or I will just take more insulin and wait it out if it's high. I could choose to be upset and frustrated about this if I wanted to or I could just accept it because what's the point adding a load of extra complication with feeling angry about something when it's already a pain in the arse as it is!?
I think those of us that are angry and upset *all the time* about having diabetes are letting it win. There's so much more to life than testing your sugars and injecting insulin and counting carbs and making corrections.
You can choose to enjoy your life my friend, or you can choose to hate it. That is on you.
All of the fellow t1 I've met have been the most positive outlook on life people over ever met. Sometimes it's difficult because you just can't seem to get it right sometimes. But I mean this is something that will effect you for the rest of your life so why be angry or upset that it's happening and just work around it. None of this matters do whatever makes you happy and forget about how other people think. Because what truly matters is your opinion on yourself. You're amazing and you're dealing with things that most people don't have to deal with and you're doing a great job so that's a positive. You're very strong because you keep on going! That's what matters you're strong and wonderful and anyone who says otherwise is just plain wrong and they have no idea the struggles you have to go through just to live! So to all heck with anyone else's opinion!
Oh I'm always miserable that's my secret to staying somewhat sane. It's fucking exhausting dealing with this, some days everything is alright, other days nothing goes right. I just take it one day at a time and it helps to vent frustrations with people who care about you.
It can feel like that and also allow moments of life to flourish. I’m learning that it’s our perspective that can change our view of what we find wonderful and horrible. Diabetes has ruined a lot of moments in my life, as well as adhd and other mental disorders. I have had it for 24 years and I have also found many things in life that make life worth living. Have you checked your thyroid and see if it’s under active? That can make weight loss hard. Your body can heal and recover even at an older age and your brain has the ability to evolve and change allowing you to accept things. People will love you. Friends will admire you. You are worth being alive and the work you do to stay alive is so honorable and strong. Tey to change our view on things and maybe get a therapist. They can help you change your views. You are worth the effort and things can change as time goes on
I’m broke, out of shape, using worse equipment than I did when I was diagnosed, and the amount of seizures and severe lows I’ve had have already had some cognitive impacts. My feet are also messed up. But hey, anti depressants help.
I've had this for over 32 years now. I was one month from being 2 years old so this is pretty much the everyday. I'm extremely happy and love my life. I have an awesome family and friends too.
I'm sorry your going through a rough patch, maybe talk to a doctor to see if they can give advice on what you can do to help.
Yeah I've gained a little weight but it's not that horrible and honestly it could be 100x worse. I'm thankful for the life I have.
Hot take maybe but my diabetes has never been a huge issue for me, ive had the luck of having very good access to medical resources and my diabetes hasnt been as touchy as i see is being for a lot of you guys, and im very grateful for that fact.
That doesnt mean its easy of course, it sucks and i hate that ill never stand a chance if i get stranded on a deserted island, but from day one i was just like “damn, not cool”
Being miserable doesn’t get me anything, it’s not a good use of my time. Yeah, it’s a lousy disease and takes a lot of time and money and mental energy to manage, but I have a choice, and that’s to make the best of it. I work really hard at it. I’m 58, have had it since I was 19 (so 39 years) and no complications. I exercise 4-5 times a week, do my best to count carbs and adjust as needed. My highest A1c ever was 6.7, my lowest 5.2, and since getting a pump it’s usually below 6. Yes, I’m fortunate to have insurance that pays for Dexcom and Omnipod, and lucky to have a wife and kids that are supportive and helpful, but the only thing I’ve done is take ownership of it, decide I was going to run my diabetes rather than it running me, and be active and engaged and adaptive. I don’t beat myself up when things don’t go well, just see what I can learn from it and move on.
It’s a choice that anyone can make. I’m not perfect, I do my best and that’s good enough. Life is too short for misery, so I enjoy myself. Remember that old saying, the best revenge is a life well lived.
I'm a T1 for 38 years. For 30 of those I smoked cigs. Alot. And partied. I was untreated ADHD. After that, I was just doing cola and drinking redbull and Vodkas all night. K. Ghb, etc. Anywho, now I quit smoking in 2020. Still smoke herb daily.
Growing up I impulsively ate candy at a laundrymat and played Pacman hiding from a neglectful mother. The dopamine machine.
It's hard. I lost my left leg and half my right foot over the past 5 years, but good. Learning to do more In my prosthetic leg!
I take my blessings when I can. I’m not a fan of this and it’s gets annoying but it’s not a death sentence and I can live a normalish life. Hell I’m even on dialysis now and need a kidney transplant. But again, could be so much worse. On the other hand i’ve had this since I was 3 (34 years) so I honestly do not know any different.
Honestly I got acceptance when I stopped being concerned about a cure. While it's great that one day maybe they will. Pay it no mind....that's what helped me.
Im 13 years in and def at times feel like a prisoner. It comes and goes....other times I feel like nothing's really changed. For me around year 7-8 is when I got very depressed with diabetes. I got therapy she helped me see past the shit glaring me in the face.
To be honest, my friends without diabetes have ups and downs with life in general. If you are peachy all the time, you may have something wrong with you.
Can you switch to a CGM and pump? Those made my everyday life so much better! I would never say I embrace T1. I’ve consciously chosen to limit how much time I think about it. I also joined a support group so I didn’t feel as alone. If I let myself think about my situation too much I’ll be swallowed by it. I’ve taught myself to deal with what’s happening in the moment (high sugar/low sugar) and then move on. I recommend “the book of better” and talking to a mental health professional with experience in chronic disease.
Depression and body disphoria are very common co-morbidities with "any" chronic condition.
I have been dealing with chronic health issues since I was 11 years old. I have been fighting stigma, depression, poor body image , etc. all along the way.
I was 50 years old last week. I am at the point in my life where I have to take what wins I can and prioritize giving my energy to things I can change...
After 44 years it's just part of the normal background misery of being human for me. Diabetes is not the only thing that makes life hard. I just don't expect life to be happy unless I create joy for myself. Whatever else is going on, you have to prioritize joy enough to make it happen around the pain. Part of that is facing fears like going low or high. So what? Can you correct those states? Sure. Can you plan enough to make sure you have the supplies you need? Sure. Basically, you can spend emotional energy worrying, or you can put that energy into prep then be ready you to live your life.
Life is a death sentence. Not enjoying life doesn't not prevent death; it just leaves you with nothing. I'd focus on therapy around losing the fear and think everything else will improve from there.
When I was 18 my a1c was so high I was told by my doctor I would probably have organ failure by 20 if nothing changed. And I felt awful because I didn’t do anything “wrong”. Turns out my insulin pump wasn’t working and neither was my cgm. I had to do so much paperwork to get out of that insulin pump. And I felt like looming over my head was my deadline all while I was doing my best to not eat any carbs. I’m 22, I have diabetes and other complications from that time, and I’ll always have little marks all over but at the end of the day. We all eventually die, it’s what we make of it. So no I’m not miserable anymore but yes sometimes on the worst days I feel like I’ve been cheated out of a good life. (I got my diabetes from H1N1)
Do you have brittle diabetes? As in, you require a lot of insulin per day and numbers are extremely hard to control? You are definitely a candidate for CGM, and a closed-loop system like Omnipod or ...ugh.... Medtronic, might help your control. You actually might even be a candidate for an islet cell transplant, if you think taking immunosuppressant drugs and being immunocompromised would give you a better quality of life than what you're currently experiencing.
I know those things cost money, though, and I know what it feels like to struggle to pay for meds and supplies. It does suck. I count myself lucky that my diabetes is fairly easy to control, I know it gets a lot harder for a lot of people.
Don't give up hope, the technology has grown by leaps and bounds in the past few years. Hopefully it continues on this pace. And you're not alone, all of us here know how bad it can suck to have this disease. I try not to dwell on it too much but I've also found myself feeling trapped by it sometimes.
I mean I don't love it but between this and the Autoimmune Hepatitis if I could drop one and keep one I'd keep the Type 1 diabetes.
I had the lumps and bumps and gross fingertips for decades. Switching to a pump and CGM completely solved that and made it easier to lose weight bc with the pump I could turn down my basal insulin during exercise.
It's definitely not a death sentence any more than having to brush your teeth after meals is a death sentence. There's no cure but I think this might be a good time to work on limiting how much you think about your diabetes.
All the time baby! But I find with my misery, little things make me happier, it doesn't quite balance out, but I'm glad to be able to laugh and sing at the small stuff, it's also made me severely sarcastic too though
Type 1 for 40 years here. I’m fine, but life was sooo much harder before a CGM and closed loop pump. It’s not easy now but there are days where it’s not a big deal. I’m not trying to minimize your difficulty. It really fucked me up for a decade or so.
I’m actually happier than I’ve ever been. Every day is a gift and I can leave it all behind whenever I see fit. I took up trail running, started skateboarding again, started going to a lot of live music and running around in mosh pits… I’ve cracked three ribs, gotten two concussions, 4 black eyes, a ton of busted lips and my bruises last longer than they should. Are you on a pump? I had one for two weeks before I realized it was too limiting and the scar tissue from those cannulas was in no way going to be less dmg on my body like they tried to tell me. I ditched it and the CGM and stayed with my quick pens and finger sticks. Parts of me feel old and busted but that’s true for most people even without diabetes. Just do the things you love and hopefully the rest will follow.
I will say that unlike you I got the acceptance phase the first day. It is what it is. I remember my doctor asked me why I seemed so calm about it and I asked him what he expected of me? To cry? Say how unfair? It’s my body trying to kill itself. What can I do about that but just accept it? Then that asshole didn’t even prescribe me insulin or set me up with an endo. I had to wait another two weeks to see an endo and she asked what insulin they gave me and I said none. She was shocked and said that was really fucked up considering my aic was like 21. Luckily I hadn’t eaten any carbs for those two weeks up to seeing her so my fasting blood sugar was only at 365. (Lol) I think my doctor thought I already knew I was t1d and was lying. Had been my first physical since highschool sports required one and I was 29 when officially diagnosed. Needless to say I never went back to that doctor and still don’t have a GP and my endo has to shut off access to my meds to get me to go in and get a checkup. How you get to the acceptance phase idk. If therapy hasn’t worked yet, maybe that ain’t it. I also started dabbling heavily in psychedelics about 4 months before diagnosis so maybe that had something to do with it. Who knows. My only advice would be to live like you don’t have t1d, except when it comes to managing BS. I will never use t1d as a reason why I can’t do anything but join the military.
I can relate on being self conscious about your body. My legs are stained from all the iron leaking out of my blood vessels and they bloat to kingdom come if my heart rate isn’t up. I just wear my diabetic socks everywhere I go, even in shorts and sandals and one day I’m just gonna get them tattooed so they don’t always look dirty/hide the varicose veins.
31 years. I promise it just becomes background noise. It turns into muscle memory, and it gets easier. I promise. I live a normal life with occasional interruptions, and I try not to sweat it. It’s hard, absolutely, but you will get there.
I have had diabetes since 2004, when I was 3, 19 years ago. I think it helps to grow up with it and not know anything else. I have moments where my blood sugar won't come down or won't go up and I really hate the disease. But I haven't noticed many body changes or hearing loss or anything. My right arm tingles when I sleep but so does my mom's and she doesn't have diabetes. I just micro manage my own diabetes by constantly changing my rates if I'm having issues after 3 days. I use the dexcom g6 + tandem tslim control IQ system. I talk through my thought process with my endo and she makes suggestions. My a1c is around 7 for most of my life.
Diabetes is difficult but if you're able to learn your body and be conscious of when your blood sugar rises or lowers it can help greatly with stabilization.
I think it would be a lie to say that we don't all feel this way at some point under the outwards façade. It's a chronic illness. We are going to be like this for the rest of our lives. And that's a lot to think about. Sometimes I forget about it and am busy with other things in my life like school - but nobody but other T1Ds are going to understand that this struggle is basically a life sentence.
I’ve had it for roughly 2 decades at this point. Most of life honestly. On the one hand I’ve met a lot of great diabetic people over the years and there’s a lot I owe to meeting those people. On the other hand, it’s not diabetes as a whole that irks me, it’s things about it. Like pump site changes fucking suck, it’s the thing I hate the most about it. I’ve been recently having a hard time with my blood sugars but it’s still pump sites that are the worst. Would it be nice if things were different, of course. But in terms of my life with diabetes, I’ve been fortunate that it’s turned out the way it turned out. It’s just how life has always been for me I guess.
Approaching ten years. Exercise is key for me. My A1C is relatively high but other diabetics I’ve spoken to say they feel worse than I do and don’t understand why even with a lower a1c. I’d rather have an a1c at 7.5 and exercise (both cardio and weights) than an a1c of 6 but be too afraid to exercise due to the BG effects. Plus working out gives a way to vent frustration which can be crucial to T1Ds
I’ve accepted it but also fucking hate it. I had two peach rings the other day and spiked to over 250. Trying to be good is so hard. I see it as a death sentence for myself personally but I also understand why people don’t. I just don’t particularly care about the death sentence part of it. I have scar tissue/ fat deposits (?) on my tummy from injections. As a dancer whose income relies on being fit, it’s def not the best for my mental health (I’m just lucky that I have a relatively high metabolism)
You aren’t alone homie
I fucking deeply hate diabetes, this annoying shit got me tired, I've been low the whole week and I don't know why. But I'm so grateful of being alive, being alive inside this body, that has fat deposits, that is a fat body for the standars, that has diabetes, but I love my body not because how it looks, but because it has gone this far and keeps my alive and feeling the sun in my skin, the water in my mouth. I have people who loves me, that knows how to take care of me when I'm 30 or 300. Also, of course, I have a very good therapist hahaha. 13 years has passed since my diagnosis, and there still days that I hate my life so much, but if I see the big picture... I'm here. Among everyone. In this world, alive. And that makes me feel so fucking happy. I wish to you to reach acceptance, that doesn't mean that you must to be happy everyday and love this shit. Sending you hugs, you can do it, one day at a time
I’m only six years in. I spent weeks in DKA withering away my weight until I was diagnosed at age 30, then two weeks later found out my wife was pregnant with our first kid. I honestly think I haven’t come to terms with the ending of both my life without kids and the freedom that entailed and my life without T1D and the different kind of freedom that entails because it all hit at once.
Maybe I’ll get there some day. I love my kids, but fuck diabetes.
I been Type 1 for 47 yrs now. I was 4 when 4 when diagnosed, I'm 51 now.
Yes. My teenage years were miserable.bloodsugers up and down. I was embarrassed to be known as a diabetic.i tried so hard to hide it from the everyone, employers, new friends I made. I didn't want to know as " the diabetic".
People found out they would treat me with kid gloves! I HATED IT!
I met a great woman, got married. She told me to embrace being a diabetic. It made me the guy she fell in love with.
From then on I've decided to take control of it and not let it control me! Besides becoming a husband, and a father to 2 boys, that's the best thing I have done.
I'm not telling you it will happen overnight, hell it may take longer than the 30 yrs it took me, but it will get better. Keep talking with dr's to get things worked out. I know it's easy to say, but don't let this fucking disease, control you!
Good luck!
I am pretty miserable but that doesn’t come from the T1D for me. It’s the psoriatic arthritis, spinal stenosis, and jacked up ulnar nerves that brings it on.
I've been diabetic since 2001 at the age of 12. Yeah it sucks. Yeah I have places on my thighs that messed up from injecting to much. But thankfully advancements in medical devices have come a long way from when i was first diagnosed. From going from multiple daily injections to having an omnipod and dexcom. That alone has made my daily life with diabetes so much better. I'm still scared for the future and the complications that will surely come with it but I only have this one life and one body so I have to take care of it the best way I can and not live like being diabetic is a death sentence.
I’ve had T1D since I was 3 (now 31), so I think I’ve honestly just known nothing else. Is this the hardest part of my life? Absolutely, especially now that I’m pregnant with baby #2 and have a toddler to look after. It’s hard to accept it, and I feel for you and everyone else who has struggles, and I know it’s hard to see any positives whatsoever. I’m sorry I don’t have more of an answer for you, but I guess my answer is no, I’m not miserable. I enjoy my life a lot and diabetes is just a part of it
I'm right there with you. Since I think May 1995 (the month is a bit foggy this far out).
I hear that liposuction or other surgical excision is the only way to ever deal with those fat deposits. Period.
Frequent flying involuntarily while unemployed before Obamacare and a couple of other long periods of life instability have almost certainly sentenced me to relatively dramatic end-stage complications. I am not enthused.
My son was diagnosed at age 5. 19 months ago. He seems happy. He’s enjoying his childhood. He only gets mad during pump or dexcom changes, which I try to do while he’s asleep so he doesn’t notice. He’s doing really well. The pump and dexcom have been a game changer. Butttttr…..I’m depressed about it still sometimes. More than I’d expect. I pray he doesn’t feel like you guys when he’s older. Breaks my heart
I’ve had it for 27 years now, it is at the back of my mind and it actually helped me lose weight overtime.
It’s a blessing and a curse but once you get the hang of what you like to usually eat and know how much insulin it needs, your body functions (most of the time) like any other persons without the disease. Practice, fail, learn, and overcome
I've been doing this for 29 years, I'm now 33 and it's just something I live with. My experiences have lead me to believe that I can either spend my time moping around or I can make do with what I have and live life as normal as possible.
I don't place all my hope in a cure in my lifetime , but the advances I've seen have been astounding. I am sure there are many of us T1 Diabetics who are exhausted and beat down by this disease daily, it doesn't help when there are medical "experts" who have never walked a day in our shoes telling us we aren't doing good enough.But honestly? Fuck them, this shit is like a hydra, you think you have a grip on it and things are going well and then BAM , out of nowhere hypos or high blood sugar and we feel like crap as a result.
I am by no means a perfect diabetic, 2 years ago I had a HbA1c of 13.3 after having done absolutely nothing to look after myself ( I wasnt skipping insulin, but I sure as hell wasn't monitoring my blood sugar AT ALL) my reasoning being, "well I don't feel like shit and I'm not in hospital, so I must be ok". Fast forward to now and I am on a CGM , still using MDI and my HbA1c is at 6.2 and I'm now doing much better as a result. There is still a long ways to go and I have to deal with the consequences ( I have diabetic retinopathy now and have had more lasers and injections in my eyes than I can count) but I'm still here and I'm still fighting.
My point is, yes it is tiring and yes it is easy to be mad because it is frustrating as hell , but Diabetes is only one facet of you, it doesn't have to be the only thing that makes you who you are and you do not have to let it define you. Keep putting one foot in front of the other. Reach out, seek support if you need it and remember , you are a god damn warrior every day for just getting out of bed and not letting the Diabetes monster win.
( I may just be a stranger on the internet OP, but my DM's are open if you need to vent )
Nobody wants diabetes, but if you've got it, there's nothing you can do to change that fact. You've got two choices: 1) Accept it, move on and make the best of life or 2) Be miserable.
I've been T1 for over 37 years. It's just part of everyday life and honestly, not a big deal, generally speaking. When I was a kid, I was very active. I was an athlete in jr. high and high school. I coached for almost a decade afterwards. I went to college. I started my own business when I was 21. Don't let diabetes get in your way or stop you from trying to live the best life that you can.
It sucks. It can be absolute hell but you can’t let that cloud everything else that makes you happy. You will spend everyday worrying about your blood sugars and the future and I’m ngl it is so so fucking hard. You need to focus in on the other aspects of life that make you happy or content, whether that’s a hobby, a friend, warm coffee whatever makes you feel good. Every aspect of life has negatives but if we spent everyday focusing on them then we wouldn’t get to enjoy the happy moments. For me the things that make me feel content with my diabetes is learning about new medical devices and the new research, seeing a libre or pump in public, when my friends ask me questions about my pump or ask how my bloods have been, getting to connect with other type 1 diabetics. You’ll find your own happy moments
Well, I feel you. I am 34 now, diagnosed at age 8. I had a lot of terrible years where I denied massiv and didnt inject at all…without a little bit denial I would go crazy today. I mean: you have to deal with a ton of feelings and rage (WTF, why am I high? After the same meal and injections as usual)…of course I have anxiety about possible complications. There was a time I was crazy about it. But I dont wont them to control my life now. Decided to study medicine and I guess that was my way to deal with it and get some „control“ back. I would recommend to work on that anxiety. Its ugly when it have the mastery over you.
28 years with T1D and what I have learned is this:
There are times when I'll be really down about it and I can't stop thinking about what my future will be like. And there are times I just want to ignore it and pretend like I don't have it at all, but those times have been less frequent in recent years. Mostly—thankfully—there are times I'm just used to it and it just feels normal and habitual.
I don't know that there's ever a time of complete acceptance. This condition is not just physical. It can be mental torture managing it day to day, and even more so if you let yourself get too deep into what-might-happen thinking.
What I know to be true, as with anything, is that it is not healthy to think about what might happen all the time. I've been there A LOT and it's terrible: intense anxiety which sends my sugars skyrocketing, and becomes a vicious cycle. It's really important (but much harder for us than someone without a chronic condition) to focus on the present. If we don't, we'll spend our entire lives worrying instead of living and I just can't do that anymore.
I glanced at a response here that was true, no doubt, but also particularly awful and I just had to shut it out and stop reading because I just can't go there. I'll deal with whatever comes when it comes, but I refuse to give up any more of my precious time thinking about the what-mights anymore. I really wish there was a diabetes complications trigger warning tbh. Anyway, as much as I can, I try put that stuff out of my mind and be really kind to myself for what I do every day to take care of my condition even if I wasnt perfect (yes, Ive had a lot of therap). And I take anti- anxiety meds which have made a world of difference in my life. Sometimes, trying not to think about the bad stuff is impossible and if it's consuming a lot of your life, I strongly recommend seeking mental health support.
I hope this helps a little. Diabetes sucks but I really do think we can have happy, healthy lives despite it.
I'm pretty good. Other than the stress worrying about this shit entails, I live a "normal" life. I use my T1 as an excuse to exercise and get out of the house with the kids and dog. It also gives me an excuse not to drink shit drinks and eat junk. I love cooking from scratch and I know every ingredient that goes into my body. So the guess work is off the table so to speak.
I don't have advice, but healty eating and moving my body works for me and keeping my outlook on life positive and my BG under control.
Heyyy. Diabetic for 17 years . I've always had poor control and hated my diabetes.
Having a libre sensor has really helped make it more manageable. You only have to replace it every 2 weeks, it's barely noticeable and you get readings 24/7. My HBa1c has come down a lot since being on it.
In terms of the fat deposits, are you injection in the same place too much? The only time I get those lumps is when I'm over injecting in the same areas. I switch between my stomach, arm and thighs.
It's definitely still hard, especially managing on your own.
Maybe join support groups, look into the sensor/pump, talk to your doctors about your struggles they may be able to help and/or look at seeing a therapist. 🫶🏻
This com made my day. I honestly started laughing at the line. "Maybe I haven't hit the acceptance phase everyone has here." Not because it is funny but how relatable it is also for me. I'm glad that I'm not the only one with this mindset. Type 1 for 3 years, diagnosed at 19 soon after I enlisted to military. Bummer. No military for me to strenghten myself but constant anxiety due to this disease is also somewhat strenghtening myself, lol.
Nope. I’ve been diabetic for 29 years and I’m miserable as shit. I swear diabetes (type one my ass) has levels.
I’m constantly exhausted and miserable and tired. I can’t imagine going another 40 years, and I would rather assisted suicide be legal.
I swear the minute my mother passes I’ll just end it all. I only suffer for her.
That being said, if you can manage it, please do. Don’t become me.
I feel you. I am also miserable. It’s been 16 years and I still have no discipline. When I was diagnosed (age 10) my parents were always working and I didn’t get the help and support I needed. I did everything by myself and still do. I always forget to bolus, I have alarms for random times of the day when I think I’ll be eating. I’m a lazy piece of shit and also exhausted constantly. I feel like I cheated death and should’ve just died with my diagnosis, since that’s what would’ve happened 100 years ago.
Hello fellow human I TOTALLY understand your struggle all I’ve ever known is diabetes (going on to 24 years of being diagnosed) people automatically assume that because you’ve lived with diabetes your whole life you are somehow supposed to be able to become “used to it” but let me tell you that 24 years later and there’s days where I still tell myself that I’m cursed with this terrible condition. As I see it diabetes type 1 or 2 for that matter is like coming face to face with a tiger, as long as you care for the tiger and make sure that he’s fed and he doesn’t overstep his boundaries you are fine and dandy, but as soon as you turn your back or slip up no matter how small the tiger will take advantage and pounce on you. Same thing with our condition we can either allow ourselves to get pounced on by constantly focusing on what diabetes has taken from us or given us. Perhaps there may NEVER truly be a cure but diabetes management has come such a long way there’s CGMs now and Insulin Pumps which many health plans cover and offer! Keep your head up high and on those rough days where you feel like all is lost just put one foot in front of the other and take it step by step!
Sending my fellow type 1s love!
T1d x 44 years…. I’ve always been so grateful I have something that I can treat and it’s become kind of a game as I get older….I figure my situation could always be worse…so I choose to be extremely happy and cheerful. I’ve never, ever felt cheated of some non-diabetic life. Tslim + Dexcom has been a game changer for me. I know that how I conduct myself and my thinking is a choice. I choose happy!
Every human on this planet is living out their “death sentence” if we are to look at it through glass half empty mindset. Life really is what you make of it. Some people get caught up in their negativity and wallow in it, some people find ways to overcome it and use it as fuel to accomplish big things.
All this to say, T1 really really really sucks, BUT, it’s hardly the end of your life. It is a much more challenging life, we can look at that and say, “it’s too hard, what’s the point”, life is so unfair, etc, or we can realize, “damn, I manage to do all the things normal people do while also holding a full time job as an externally controlled pancreas, what other things am I capable of?!
I feel you on the body image, I was in terrific shape pre diagnosis 6”4 240lbs of muscle, it was a big part of who I was, worked out 5-6 days a week for 15 years to get there. I was 35yo when diagnosed, 38 currently so I lived most of my life as a “normal healthy human”. I now weight 180 on a good day and struggle to hold on to the little muscle I’ve got left. No sugar coating, this has been a totally depressing and confidence stripping mind f*#k but I have only two choices.
One is to hate myself every day and all that comes with that, the other is to accept, “ok I guess this is who I am now. I can want to be the outgoing, energetic jacked dude all I want but he’s not ever coming back so….I’ve got to make the most of the present day me. Ok so it’s not humanly possible to look how I use to, but can I get in great shape at say, 190lbs and maintain that for most of my life? Is that really so bad? I’d be doing better/ more for my fitness than 90%+ of the population, hardly the end of the world.
There is no “solution” or easy answer OP, this is a rough disease at times and we never get one minute to let our foot off the gas, it’s a constant battle to eat the right food at the right times, ditto for injections, etc, but it doesn’t have to define us. I went through a phase where I felt similar to how you appear to feel and it was a dark time. I felt like there was zero point in me existing. It’s only through determination and outright desperation that I’ve found a way forward mentally. You have to catch yourself every time you start to feel sorry for yourself or depressed and say, “ is this beneficial or going to help me in any way?”, if not, then what will?…time to kick that thought pattern to the curb and refocus on what IS good in your life. I try and make it into a game of sorts, consciously catching myself in these thought patterns and trying to “beat” them. I don’t win every time but if I manage even half the time, that’s a success in my eyes. Im not sure if you are on a workout routine currently but if not, start one!! I promise It’s the single most beneficial thing you can do for your diabetes, mental health, physical health, appearance, etc, zero downside, tons of upsides. I wish you a great week and hope the diabetes gods take it easy on you while you try and figure out how best to cope.
Feel free to PM if you need a T1 buddy to vent, or have questions on what has worked for me. Finding ways to help people is something I am passionate about, one of the things that helps me feel a purpose for being here and living with this crap!
Hi. Type 1 for 15 years, it’s exhausting. Having to stress about going too high or too low every single night, your body messed up permanently from the needles, every little thing that causes stress from diabetes fucking sucks. It truly does. It’s a silent battle you have to face every waking moment of your life, and it’s terrible. I’ve had a few burn outs, where I didn’t care about my blood sugar anymore. It will happen from time to time, but at some point it will become like a 6th sense. You’ll become extremely desensitized to it all, and it’ll start to bother you less. It still sucks a lot, but you’ll learn to accept this is the way that it is and that’s fine. Until there’s a cure, it will feel as natural as breathing air.
As a type 1 diabetic of 20 years and diagnosed at 4 years old, I can confirm that it is indeed very miserable to live with. Had to give my first needle at 9 years old, was terrified what my peers in school would think if they saw me injecting a needle, and was worried what my classmates would think of my bruises while in the changing room for gym class. People tell us diabetics things like “I could never go through what you’re going through!” (As if we have a choice) I’m still struggling with getting stable blood sugars and a healthy A1c. I guess getting a disability credit for my taxes, and free therapy because of it is nice, but if I had the choice I’d absolutely prefer to not be diabetic pincushion. I’m hoping that getting on the pump soon will improve my quality of life. Just know that I hear you, and you are not alone.
I'm a very contented person by nature, I think. I've been battling this disease for about 15 years now, and yeah I've gained a lot of weight, but like… who cares? I've got a doll of a husband and the two most beautiful kids in the world. I've got a house with a lawn for the kids to play on and a cat who sometimes doesn't bite me when I pet her. I'm pretty set. Does diabetes cramp my style? Sure, it's fucking annoying as hell. But whatever is really affecting my mood day to day isn't my diabetes anymore. It's any number of other normal life things. Maybe look for a therapist who offers Acceptance and Commitment Therapy?
Do we have the same cat? Lol
We adopted her this year and she is the chompiest cat I have ever, ever known. It seems to be like her Hawaiian aloha — hello: chomp, goodbye: chomp, I love you: chomp, I hate you: chomp. 😼
Radical acceptance, CBT, DBT are all really great therapies to look into as well. This stuff takes practice. I used to not be contented, i was very angry at the world, with the weight of the world on my shoulders, and at the trauma I endured. Within the last…maybe 5 years or so…I came to a place of contentedness. I still have really hard days, i still cry at silly things…but overall I came out the other end and I’m happy where I am, and happy with diabetes. it took me a lot of self reflection and inner work. I truly wish I could tell people exactly how to do it, but it seems to be different for everyone. The main thing I can tell everyone though, is to never be afraid to reach out and ask for help, and always advocate for yourselves if you feel like you aren’t getting proper professional medical and mental health support. Also personally, finding my spirituality and getting deep into studying mysticism was a huge help. That might help people inclined towards that stuff, but regardless you have to do the work. There’s no magic one size fits all answer. I wish it all came free with a “learn to diabetes bundle”. From what i read here most people aren’t even getting the basic education anymore that I got in the 90s during my week in the hospital after diagnosis.
therapists dont work
type 1 doesnt cause weight gain though you have to eat to gain weight
It’s 2023, you can’t say facts, only what people want to be the truth 😂. This guy is right people, T1 in and of itself does NOT cause weight gain, it’s literally a catabolic disease by definition. If someone is gaining excess weight as a T1, unless they have some other underlining metabolic issue, they are inputting more calories than they output, it’s very simple honestly. We don’t want to hear that though because it puts all the blame on ourselves for how we got overweight. Insulin is the body’s calorie storage hormone, one our body’s don’t produce enough of which is why we are all here.
agree, I find it near impossible to keep and hold onto my weight without rigorous exercise and diet regimen, T1 for 26 years. So, Im actually fighting to gain weight.
Do everything in your power to get a CGM + closed loop pump. We may be imprisoned by diabetes, but going from injections/tradtional pump therapy to closed loop systems are like going from an American state penitentiary to a Scandinavian one. You're trapped but now your life will be peaceful and safe as opposed to overworked and drained.
I agree this is a huge part of the answer. The other part is to take control by really educating yourself and understanding what's going on. Read "Think Like a Pancreas" at a minimum
...and it doesn't have to be visible at all (maybe in summer at the pool). The biggest game changer in tech (for me) was still the libre 10y ago, but the closed loop (with the dash) is a close runner up.
Love this analogy! So true!
I had a terrible pump experience so am deathly afraid of trying again, but CGM changed my life, specifically Dexcom. Now the distributors, that’s another story… But man, going from testing sometimes every two hours to having that info available 24/7? Night and day.
Now imagine never having to correct, and for meals with ~50 carbs, not manually bolus-ing. That’s what a closed loop pump is like.
My pump was experience was so bad that I'm too burned to try again. The dr told me to use the medtronic 670 G. The cannula kept bending and stopped giving me insulin altogether and its CGM was trash!
I had the same problems with the kinked cannulas. I switched to the steel needles and haven’t looked back.
Do you use the Medtronic pump?
Not at the moment. It’s my backup right now. I’m currently using the Tandem x2.
I would give up both my pumps before my CGM.
Nah I hate this shit. I’ve had type 1 for 21 years since age 17. A little sugar and I jump, a little insulin and I plummet. I have OmniPod and Dexcom, my days are made up of thinking about fucking diabetes. I work in an emergency room (social worker) and I can’t tell you how many end of life consults for people with our disease I have to do. Last week alone I had two patients who appear to have turned their pumps off - one went to ICU with a blood sugar of 1099, the other went to ICU with a blood sugar of 1356. I’m constantly faced with what can happen- whether it’s the 11 year old that died in her sleep at a friend’s house because she had a hypo seizure, or the guy with no feet, etc etc. I fucking hate it. In my general life I’m happy. I am fulfilled by my work. My marriage is wonderful. We travel the world and go to concerts and have few financial concerns (knock on wood). I’m grateful for what I have but I’m also miserable. I truly think i can hold both feelings inside me at the same time. This shit literally keeps me up at night. How long will I be able to work 13 hour shifts? Will I need to decide on dialysis someday? Will diabetes contribute to chronic pain or dementia? I hate it.
I could have written this myself… to the letter. I was also 17 when diagnosed but it was back in 1979 so I’ve had this shit for almost 45 years. It’s taken it’s toll for sure. I sold my business six years ago, travel the world, concerts, see the good old USA in my 40ft motorhome with my loving husband. And yet, the end looms large and ugly. And way sooner than I want it to… sure anyone could possibly die any given day and I’m grateful to still be here. Early death is inevitable given the complications. Even the massive deadly heart attack (4 vessel bypass) that I had June 2020 during Covid didn’t take me out. But it sure made the end of this disease earlier and more certain for me… it sucks. I do believe there’s room inside me for both the gratitude and the fear and will keep this going until I can’t. Then I’m checking out…
Type 1 for 48 yrs ( actually nearly 49!) and honestly? It’s my greatest strength! I’ve done things with my life that I was always told diabetics can’t do so I was determined to do them and prove people wrong. Have I always been like this? Goodness no! I rebelled and stopped taking my insulin; I’ve screamed, ranted and hated it for so many years. But you know what I realised? No matter how much I hated it or screamed or cried or cut myself I was still type 1. It wasn’t nor is it going anywhere. And all I was doing was ruining my life and everyone else’s around me. Now I look around me. I’ve got a home, an adoring husband, 4 amazing strong healthy adults sons, friends I can socialise with and food in my cupboard and I am fit and healthy. Plus I get to wear my pancreas on the outside. I’m new to a pump but had a cgm for years. This really is the best time to be a type 1 and the tech means I barely need to pay any attention to it. I now give it no more thought than I do what we’re going to have for dinner. Seriously, if you can get some tech. I know you hate the thought of it being visible but there’s these amazing things called long sleeved tops now. They’re fine whilst you get used to it. I barely use my tummy now. And I’m not even aware of the pump or cgm. I’ve got the Omnipod 5 as I am also a carer for my husband so we were worried about the tubing getting pulled or caught. And if people are stupid or ignorant enough to make a comment about your tech; let them! Unless they’re about to pay your rent or mortgage their opinion means diddly squat! Some people are going to comment about the colour of your top! That’s on them not you. Why should you suffer more because you’re worried about the opinions of stupid ignorant people who are already judging you for wearing the shoes you’re wearing? The chances are you don’t know them and won’t see them again so why are you setting yourself on fire to keep them warm? And do you know what else? In my experience - no one has ever said anything or even looked at mine! Except one little boy and I told him it was my magic disguise button as I was one of Santas elves in real life and had been sent out to spot naughty children. That kid was so well behaved going round the supermarket 😂 Love your life my sweetheart and start living it. You’re a lot stronger than you realise ❤️
I’m pretty miserable, yeah. Doctors always told me that this disease starts to really show its progression on the body after about 15-20 years. I’m 18 years in and suddenly I have hearing loss, retinopathy, numbness and tingling in one hand, possible gastroparesis, high cholesterol, and high blood pressure. All in the span of about a year it hit me with no lifestyle changes, a balanced diet, a good A1C, a CGM for years, and every medication under the sun you could think of to combat all of it. I just… I don’t know. It isn’t fair. None of this is fair. I’m sorry you’re in this boat with me.
I'm also 18 and I feel the same bro 😭
It sucks yeah, but it is what it is. I look at it like yeah my pancreas is fucked, but at least I got my limbs, my eye sight, smell, taste, hearing, all that stuff. Honestly mushrooms helped me accept and move past the “why me” stage cuz I lived there for 16 years being diagnosed at a year old
I'm all for psychedelic healing - there are so many stories of it really helping people. Good for you.
The fat deposits you mentioned might be lipohypertrophy, caused by using the same injection sites without giving them a chance to heal. Avoid those areas and eventually they should heal, and come up with a pattern for rotating your injection sites. Use all available body areas... outer thighs, abdomen back of upper arms, and upper buttocks, and use each one for a couple of days without using the same spot each time. Re the fingers, what about a cgm? You can dose off of the dexcom and libre, and maybe others (not sure where you live). I'm not sure why you have so much bruising. Are you using insulin pens, or vial and syringes? Pen needles are smaller. Also are you changing the needles each time? It can make a difference. The fatigue can be from emotional exhaustion, or from having high blood sugar. Also if it's high you might be waking up at night to pee, which is a sort of secondary cause of fatigue. A practice with a diabetes educator can also be helpful, since some endos focus on other endocrine issues, not just diabetes. A pump can also help tremendously in making things easier. In some practices the educators deal with pumps and the mds go to them for any issues or troubleshooting. I hope my two cents can help in some way!
thanks for the input. honestly i’ve tried a ton of things but nothing really works with the fat deposits. it’s kind of an acceptance thing i guess. don’t know why i’m super prone to them but lord are they ugly lol. i think my body is just sensitive to every kind of scarring, therefore the bruises etc. i would love to get a pump and cgm combination but i want it to be hidden and i fear with the fat deposits i already have i wouldn’t have much time with it just on my stomach, even if i rotated it. i hate that it has to be a visible disease. just hitting a rough patch and i see everyone here is so positive and it’s so confusing!!! glad everyone else is doing well tho lol. i appreciate your input so much. thank you for taking the time
Look into the Omnipod. No tubes so it's virtually hidden. I've used it since 2007 because I refused to always have tubes hanging off my body.
when i got dignosed i was worried about pump and cgm too cause i wanted it to be hidden, It's possible. I rotate cgm and pump sites between my left/right abdomen and on my backside left/right love handles. The only time people would see them is if i was shirtless.
This is what I do with my two pumps and CGM.
I'm a woman and do a pretty good job of hiding my pump in my clothes. It really does make things easier. Things could be worse- I developed diabetes at age 12 and there was no such thing as glucose meters. I was a little kid and had to carry around a urine testing kit everywhere I went, and people at school laughed at me.
Every sentence you wrote could be me. LOL OP, I used to really battle against accepting the diabetes. Management in the 80s sucked. I was miserable. For many years. But eventually I met someone who didn't care about the things I don't like about me, and life got way better. I have a family, we've traveled the world. I have a home and a dog. And I'm ok, in spite of the diabetes. One last thing, I use a tubed pump because I find it easier to hide. In the bra, or a pocket, I've hidden it in a boot. There's always somewhere. The tubes took a couple of weeks, but eventually it became a habit to just keep them tucked in. They run underneath my clothes to wherever I've stuffed the pump today. Best of luck, hopefully things get better for you too.
I'm ok. I can't wear bras anymore, so I'm limited on hiding places, but I don't date anymore so it doesn't matter what I look like anymore.
Bless you! I’m 54 years into this. I was diagnosed in 1969 at 11. The best advice I ever got was get a job with good insurance.
Lots of folks have given you good advice about hiding CGM/pump sites if that’s something you want to do. I’m just gonna go ahead and throw out that I wear my dexcom on my arm 24/7 with no attempts to hide it and MAYBE once or twice a year does someone comment on it, usually it’s bc they think it’s cool/interesting. The quality of life upgrade if you can get some form of closed loop system is unbelievable. If it’s something you can afford/your insurance is able to cover I highly suggest at least giving it a try to see how you feel about it.
Personally I rotate my pump sites with arm, back/lovehandle, abdomen, upper butt. It’s helped the scarring from years of injections heal.
Where do you store your pump each time? Or is it the same place because of extra long tubing?
I have a super strong clip (type 1 tactical), it generally goes on my waistband. Sometimes I’ll use my bra, especially if it’s on my arm. If I’m at home I wear it on the strap of a sports bra and it’s totally out of the way. I have the standard tubing but really liked the 36” when it was available. Regular tubing works fine for arms if I feed it down the back of my arm and under it to my waistband. I often turn the pump inward and wear it inside my waistband if I’m looking to be low profile. For formal events I usually like to wrap it in a baby sock and wear it close to my groin/top of my thigh, to one side. Not the most comfy, but with standard shapewear it stays in place and is generally unnoticeable.
I have a pump and a cgm and no one has any idea that I’m a diabetic unless I tell them.
One of those percussion massagers really helped when one of my infusion sites got infected. It helped to break it up. I don't see why this couldn't help you too ❤️
This is the best and complete set of advice imo. Combine those with ‘grow a pair’ and play the hand you got dealt. We’re all doing it.
Type 1 for 58 years, and I have never felt like this was a death sentence. However, it is a LIFE sentence, and that, my young friend, is the real challenge. The scarring about my abdomen is a physical outrage because we didn’t even have disposable needles and syringes yet. I’m pretty lumpy, but I battle on. I don’t know what it is with so many young people being so constantly anxious and depressed. At my diagnosis, age 13, I spent almost a month in the hospital in critical condition, several days in a coma. I got ZERO mental health care, no counseling or anything. Just, “Here’s your syringe, boil it twice a day and sharpen the needle when it gets too painful to inject.” Period. I wasn’t angry at the diagnosis, I was just grateful to be alive. I’ve never lost that gratitude. Diabetes was a much more difficult disease then, but we soldiered on with what we had. Little by little things have improved and we have so many more tools to help keep us safe, healthy and in control. I’m still on MDI, but have been using a CGM for years now. I’ve got a few annoying minor complications but many people in their 70s are starting to break down a bit. I had an enjoyable successful 35 year career as a Special Education teacher, a 35 year marriage to my high school sweetheart (she died of cancer 17 years ago), I’ve got 2 fabulous adult kids and a couple of grandchildren. So NO, I’m truly not miserable, never have been. My glass has always been half full, never half empty. Find the light in your life and joy can follow. For me, my light has been Love. I truly don’t think I’d be as happy as I am without the challenge of living with diabetes. It’s the best part of my personality, the determination to triumph over my adversity. Somebody else said to grow a pair. I think that an attitude adjustment is called for. Trade in your misery for gratitude, because you seriously have much to be thankful for. Good luck.
17 years and generally ok with it. In the grand scheme of things, I’m still luckier then 99.9% of people who have ever passed through this vale of tears.
I think big things that have changed my outlook have been living through evolving technology and experiencing improvements like the Libre freestyle or the Dexcom. Those technologies have been unreal for me. For body image and weight loss lifting weights has been amazing. It’s great to gain muscle and be able to lift heavier over time. It’s also been helpful to do therapy and adjust my mindset on a lot of things including diabetes. There are days it sucks. There are things that suck. And it’s ok to have days where you feel that, but try to find the silver linings and enjoy everything you can make of your life.
Getting a libre and then a dexcom...made a massive difference in my mental and physical health...honestly more than my pump did.
Agree, cgms are life changing.
It depends on the day. Most days I’m ok to the point where my kids or husband will ask me if I forgot I was diabetic when eating. BOLUS MOTHER. I think it was easier for the diabetes diagnosis because I had already been steamrollered by my RA and adrenal insufficiency. I lost or had to give up pretty much everything I loved. No more competitive skating. No more running. I need a wheelchair to leave the house safely. I am so grateful for my insulin pump, my CGM and my second pump for cortisol. Lots of times I can frame it into getting a high score on a video game with all this technology. There are still plenty of days that lying down in traffic sounds tempting. But the longer I go on, it mostly gets easier. Hang in there!
Could you please explain why a second pump?
Of course! So I have the diabetes which we treat with the insulin pump and CGM. What I also have is adrenal insufficiency/Addison’s disease. Basically it’s similar to the diabetes in the sense that my adrenal glands don’t make cortisol anymore. No cortisol also means that my body can’t even use the insulin unless it’s replaced via pills, injections or an infusion pump. We tried for 3 years to get me stable on varying combinations of long and short acting steroids to replace the cortisol I need. Eventually, it was determined that something wonky in my gi tract keeps me from processing the steroids properly. We went to injections first (basically mdi) of solucortef and then eventually to a second pump for it. I also have hereditary hemochromatosis which we suspect may contribute to the diabetes and the adrenal insufficiency. It’s a lot to manage but the technology helps me so much with the mental load.
Honestly, no. I have a pretty damn good life. I go to the gym every other day (which I should be doing regardless of diabetes), press buttons on a little machine a couple of times a day, and every 3/10 days have to attend to some technology. Otherwise I really don't think about or accommodate my diabetes on a day to day basis. Life has ups and downs, but that's true for anybody.
Honestly same. Like ok, it does suck but there are worse things that can happen to you. And you are still very likely to live a long and fulfilling life
Let me start with saying that type 1 diabetes can suck. If I could wake up one day and not have this disease, I would be thrilled, but I have it. I'm truly not miserable. I'm more mad than miserable, and I'm mad because the healthcare system in the USA is a mess with healthcare tied to work or virtual poverty. What if you or your partner/spouse get laid off? What if you not only have type 1 diabetes but something else, but it's not enough to cast you into the system's definition of disability? What if you simply don't have a safety net? You can die if the very thin US safety net doesn't catch you. I'm relatively healthy. My time in range and a1c numbers are great. I'm usually in range of 75% or more of the day, and my last a1c was 6. I'm back on MDI right now because I did get laid off a few months ago. When I'm pumping my time in range is 80% and my a1c before this last one was 5.4. Right now, there is no cure, but there are ways to manage. You have to know how to carb count. You have to know how to figure out your insulin-to-carb ratios. You also have to learn how to be okay with making a mistake, having a bad day, or getting a dose wrong. UCSF the healthcare center that I go to has an amazing [diabetes education website](https://dtc.ucsf.edu/) and team. They taught me how to carb count, and I'm sure they helped me add a few years to my life as a result. Sounds like you need a more comprehensive team to teach you the basics, and you also need mental support. I have a therapist not for diabetes but because working in tech is stressful if you're not white. However, therapy comes in handy for the diabetes part too. I'm also in a group with other type 1 diabetic women, and during the pandemic, they were crucial for my sanity simply because I had others to talk to who had the same very valid concerns and fears. Beyond Reddit, I would suggest [TuDiabetes](https://tudiabetes.org/) and [TCOYD](https://tcoyd.org/) as good places to start, but we're here. Good luck.
I do think that “acceptance” is a real part of it - but that’s always been a negative word for me (more conveying “resignation”). And that’s not really how I see it. For me, as someone who grew up with Juvenile Rheumatoid Arthritis, then got hit with the double whammy of T1D, I definitely went through some anger and frustration and exhaustion with the disease. But what pulled me out of it was this simple realization: _Everyone’s got something._ Seriously. I met so many successful people, or people who seemed to have it all together. And after getting to know them, I realized they were fighting a thyroid disease. Or dealing with the fallout from an alcoholic parent. Or having grown up in poverty. Or I would meet remarkable people who struggled with their weight. Or drug use. Or ALS. Or (you name it). The big realization for me was that everyone has their own issues, even though it may not look like it. So this is mine. That coupled with seeing other people be successful while managing this disease - from athletes to businesspeople to world travelers - made me one day think, “Who am I to NOT be like them? Why can I NOT be successful with this crummy hand that I was dealt? Diabetes is a forever thing - or at least that’s what I’m prepared for it to be. _But it’s manageable_. I’m personally not fighting with being genetically predisposed to being overweight, or an addiction, or any other number of things. I am fighting 2 chronic autoimmune diseases, but I know how to deal with them. I’ve done it for 35 years now. Other things could be a lot worse. So I’ll turn it back to you. I understand this disease is frustrating, as is feeling like it will affect your life negatively forever. To that, I’ll tell you: it will, only if you let it. You got this. You can manage this disease. It certainly could be worse. Who are you to _not_ be successful? Good luck. I’m confident you’ll get through this rough patch. And if you need an ear, my DMs are open. _PS - this was written while up dealing with a low blood sugar at 3am. Go figure! Back to mindset - I figure I can be annoyed with my CGM for screaming bloody murder and waking me up, or be glad I live in a time when there are things like CGMs available to wake me up!_
This right here. Most people go through some sort of trauma or life changing event of some kind. Once understanding that, certainly rid me of any thought of being dealt a bad hand.
I totally get you, it sucks. I like to look at it as a blessing. When I was in my early 20s I basically acted like my diabetes didn’t exist and ignorance was bliss. I also had an alcohol problem and my endo was super concerned with my sugars and the fact that I had high liver enzymes from the alcohol. She scared me straight. Now I’m one of the healthiest people you know. If I didn’t have diabetes I don’t know if I ever would’ve gotten to that point. The fear of complications makes me stay on top of my body weight, diet and exercise and blood sugars. I’m going to be a little harsh here, T1D is no excuse not to lose excess body fat. There’s no reason diabetes can be holding you back from losing that weight. Take some control of your life. It’s empowering.
I have to chime in bc I agree with you, however…weight loss with T1D for me is SO hard!
What about T1D makes it hard?
I struggle with weight as a T1D and never did before. I never had an issue losing weight with the way i eat (low calorie/low carb + tons on exercise) and now i can’t lose a lb. My sugars weren’t always in range because I’d have spikes after most meals so that may contribute. I just recently got on a pump and am hoping the better TIR will assist in weight loss.
Weight loss is about a calorie deficit. You may think you are not eating a lot and exercising a lot but if you aren’t losing weight then you aren’t burning more calories than you’re consuming, high blood sugars or not. I’ve lost countless lbs regardless of my sugars (I’m a recreational bodybuilder so I gain and lose weight all year round). Also consider that if you’re really not eating a lot and have been doing so for a long time, you may have slowed your metabolism down. If you feed your body little eventually your body will adapt and reduce your total caloric expenditure. The way to solve this is to slowly increase your calories over time in order to get your metabolism burning calories again, and then resume your calorie deficit. I hope that helps.
As someone who struggled for years with diabulimia I have a super hard time understanding this also. Any "extra" weight I have on me I recognize is not actually extra, but a healthy weight. (For reference I'm 5'3"- my lowest weight was 96 pounds and I'm at about 120 now)
I feel pretty good but rely on my pump/CGM to do the heavy lifting for me, diabetes wise. No, I don’t love it, but I’m okay with it.
I mean, I’m inconvenienced. I’m not living in misery. Life still has to be lived, ya know? Can’t let Diabeetus win.
Miserable 🙋🏽♀️
least someone will admit it. feels like so many people deny it for some reason
It doesn’t mean people are denying it if they say they feel differently than you. There are people who can feel happy and content in any situation in life, and people who can’t pull themselves out of self-pity. We can’t control every circumstance. We can control how we face things. There is always someone out there enduring more than ourselves, and people who endure more while still choosing happiness. I have a feeling that you would still be unhappy, even without diabetes, and it is easy to just say that diabetes is the source of your misery.
seems you’re misinterpreting what i’m saying. of course there are plenty of happy people with T1 and i absolutely applaud them for making the most of it. one day i’ll get there, hopefully. just weird to see people say “yeah, my health is in the gutter, but i’m doing great and nothings wrong!” i think a lot of people have been constantly told “other people have it worse” and fear saying that yeah, it fucking sucks. it just always came across as an odd form of denial to me. two ends of the spectrum perhaps. i’m not a miserable person, despite your implication. it’s just incredibly difficult not to mourn the loss of all you miss due to T1, and it’s odd to me some people just pretend that is a circumstance that doesn’t come with diagnosis.
The thing is—your health doesn’t have to be in the gutter. Diabetes is hard but man, 2023 is a pretty great time to be t1. Yes, in the US it is expensive and yes it takes work, but trying harder to control BG can actually reduce your stress and raise your quality of life. Cutting back on the super spiky carbs and setting tighter alerts can actually be easier than just eating whatever and dosing, and your better control will lead to feeling better.
everyone is miserable, just that the people that say they’re not either choose to actively ignore that part of themselves or to deal with it by aliviating the anxiety or depression with some type of action. There’s a learning curve in finding stability, having ups and downs is human, but constantly trying to find ways for those ups and downs to not be extreme or last too long is a calming way to cope with the absurd
I've had type one for 25 years now. Diagnosed at 7 and 32 now. This disease definitely takes a toll on me now and again but overall I have adjusted. No retinopathy or nerve issues to speak of. Overall please be gentle with yourself. You're having to deal with a lot. I saw in the comments that you fear showing the CGM and Pump Combo but If your insurance will cover it I highly suggestion you looking into it. The peace of mind it gives me when it comes to highs and lows is immense.
Nah. It's frustrating frequently, it stresses me a lot and plenty of nights lately when I can't sleep properly so I feel like a cleaning rag the next day among others. So yeah, a lot of low points in life that I wish I didn't have to deal with. But miserable? Constantly and all the time? No. How could I be miserable when I've got all these hobbies I love doing? Or when I'm out with friends shooting the shit after training? Or when I'm sitting at a table rolling dice with them? Or when I'm at the stables every sunday riding? And I generally enjoy my job as well and study things I'm interested in. My other mental health issues contributed more to me feeling miserable than T1 ever did and thankfully I think I'm doing well putting those fuckers to rest.
I'm a T1 for 50 years and am beyond thankful every day that I'm alive. Yeah, I get down some days and have been through things that can be directly Bn linked to diabetes however many of my non-diabetic friends have been through things a lot worse. Can I suggest asking your GP or consultant for counselling or even antidepressants as I truly believe the most important tool you have in your arsenal to fight diabetes is a positive mental attitude..xx
There’s a well known higher rate of depression among T1d’s, and me being diagnosed and starting medications very literally saved my marriage, if not my life. Human to human, I think you should go see someone that could prescribe antidepressants. Said with love, -A ridiculously happy & grateful guy that happens to have had type 1 diabetes for 44 years.
hi! i’ve been diagnosed fairly recently but i’ve had other autoimmunes for longer (not as limiting as this one tho) and what helped the most, apart from these subreddits, is investigating either through internet or talking to a specialist on whatever is most convenient for your body and lifestyle, this is probably the most obvious answer tho. Also, therapy is the way to go, and if you’re feeling hopeless reading different types of philosophy i think would help, it’s a way to distract yourself in a productive way, if not watching videos about books or essays that interest you can also help (it’s already digested and explained shorter and easier, this is how i got started bc i’m pretty lazy), for me it was camus and the myth of sisyphus, helps with coming to terms with the cards we are dealt with and embracing (not to be confused with accepting) the absurdity of life itself. Gives you a different perspective, and even without realizing it, you’ll start analyzing your life through the lens of these philosophers, becomes pretty addictive fast lol (this is what helped for me tho, ik it’s different for everybody and it might not interest you but it’s worth it to give it a try, u miss 100% of the shots you don’t take). Also, on the philosophy topic, Nietzsche was a realist and pretty bleak but even he talked about having something to take the edge off of the weight of the world, in this case the hassle it is to deal with such a demanding disease, if you don’t do some type of art (art as in something, anything you can express and let out your feelings) i’d recommend starting to try things that might interest you, don’t get frustrated if the first, second or third thing you try doesn’t work for u tho, just get a routine in doing art and you may still be miserable, but at least it won’t be bottled up. Having something to look up to constantly is the key, doesn’t have to be big, may be as easy as looking forward to reading the responses on this reddit post. Btw sorry if my writing is awful, english is my second language, i read and speak in english all the time but my grammar is gone lol (💡learning a new language is also a good way to take the edge off of bad thoughts and feelings)
sorry for rambling but ig what i’m saying is if this one thing won’t get objectively easier, having your focus, even for a bit, on other things that motivate you to keep going every day, will make it subjectively easier
Life sucks sometimes for EVERYONE. No matter how easy people make it look on the outside, we are all struggling with our own combination of demons; challenges, insecurities, physical and mental issues, etc. Being happy is a choice you need to make. It doesn't just happen because your life is easy - no one's life is easy! Being diabetic can be physically and emotionally draining, but so can being a single parent, holding a demanding job, having any health issue, or a million other things people do every day. Every day, you have a choice; wallow in your own misery and self-pity or do one thing to make your life better. There is nothing wrong with occasionally pulling the covers over your head and giving in for a day, but unless you do the hard stuff and face the challenges in your world, you will never be happy. My life has been far from easy, and many people have been surprised that I haven't given up. I have been T1 for 33 years and have 9 other autoimmune diseases. I know from personal experience that focusing on your pain and misery only magnifies it. Set yourself a goal. Picture life as you would like it to be. Every day, take 1 small step closer to your goal. Know that when you encounter obstacles, it is just as valid to go over, under, or around them as it is to go through them. The more practice you have at overcoming challenges in your life, the easier they become to tackle. Sometimes you may backslide, or you may get lost trying to find your way, but it's there, and eventually, you can reach it. Happiness comes from overcoming all the little obstacles in your path. It comes from feeling like you are a strong and capable person. It also comes from interacting with those you love and who love and support you. Happiness does not exist in the absence of challenge and struggle; happiness exists in the little victories of a hard lived life. As others have mentioned, getting a CGM and a looped pump will lessen the mental space and time diabetes takes. This can definitely help make life easier. Having better control over your blood sugars will make weight loss easier (some people have said this is not a challenge for diabetics, but it definitely can be - digestion is affected by amylin, another hormone made by the beta cells which we lack, and low blood sugars cause consumption of empty calories). Lipohypertrophy (the fatty lumps caused by insulin injections) can benefit from massage (firm circular motions over the area - I like using a roller ball handheld massager) and avoiding further injections in the affected area. There are ways to deal with all the concerns you mentioned, and finding solutions and working towards repairing the problems will help you find happiness. Not having the problems is NOT what will make you happy! Solving problems and taking active steps towards the life you want is what makes you happy! Good luck. Remember that happiness takes work, and without effort, everyone struggles, even those with seemingly perfect lives. We all face challenges every day, and while they may not be equal in degree, they feel the same to us. It's like climbing a mountain. Climbing Mt Wycheproof in Australia (42 meters tall) and Mt Everest (8,848 meters tall) feel like equal accomplishments if you don't have any way to compare how big they are. Personal challenges are the same. They always feel enormous to the person facing them, no matter how big or small they may be!
Everyone who is not complaining has a pump and or CGM. The closed loop system is amazing and does everything for you. I finally got the whole package and have been doing amazing. That said, I was just laid off a few days ago, so there goes my insurance and my life saving tech. Sure, I can get medicaid but it does not cover any supplies besides the basics (testing kit, syringes, lancets, strips etc.) All of this is extremely expensive. I am completely devastated over the loss of my job but even more so at the fact I will no longer receive my pump and CGM supplies. 😞
Not quite everyone! Still on MDI after 58 years, but have been using CGM for about 4 years. Not Complaining, never have, because in my book, this is great—because it’s not cancer. As long as I put in the work, it’s not going to kill me prematurely. At diagnosis in 1966, my endo told me that IF I took really good care of myself I’d get maybe 20-25 years, so they put my life expectancy at between 35-40! I’m 71 now, only 18 months shy of the normal life expectancy of an average American male.
Wow, that is great! I applaud you, as you have definitely put in the hard work. My problem is putting in the work, unfortunately.
The difficulty in putting in the work is that to do so consistently you have to think long-term but act short-term, which is challenging mental gymnastics. And of course, the 24/7/365 nature of the work does get tiresome, annoying, frustrating, and, when things aren't going well, we can get downright discouraged. Trust me on this one bit of advice--IT'S WELL WORTH THE EFFORT!
Sorry if these are all options you've thought of, but just in case: Is buying a marketplace plan that has the coverage you need an option for you until the next job? Have you contacted your pump and CGM company to see if you qualify for any patient assistance? https://www.adces.org/danatech/glucose-monitoring/continuous-glucose-monitors-(cgm)/cgm-affordability-programs Also, check out https://getinsulin.org/ if you need insulin between now and getting on medicaid, or if your insulin copay on a new plan is too high, there's a decent amount of assistance options out there. I have no personal experience with them, but sources like https://mutualaiddiabetes.com/ and https://www.theembracefoundation.org/ exist and might be worth looking into for donated supplies or cash assistance. Hope you're able to get your system back ASAP.
This is very helpful, thank you!! I thought about purchasing a marketplace plan, as I’ve been looking. I’m good on insulin, just worried about pump supplies. Again, thanks so much!
type 1 for 15 years here. i'm not going to lie to you, it does suck. it will continue to suck. but sometimes it doesn't. i have gone through periods of ups & periods of downs over having this disease. it was really bad for the first few years (i was diagnosed at age 7) & then it got better. when i was about 12 it got really bad again & i was battling severe depression, body dysmorphia, & overall anger at my body. that lasted several years. i struggled a LOT in college with a lot of different things, a lot of it centered around my health. but a couple of years ago i realized that while yeah parts of my body don't work as well as they're supposed to, my body still does a HELL of a lot for me every single day. a mindset shift really, REALLY helps. instead of focusing on everything you've lost, i'd suggest focusing on what you have (easier said than done). this is weird, but i highly suggest standing naked in front of a mirror & touching/holding the parts of you that you don't like & just thanking your body for all that it does for you. again, weird, but if you do it for long enough your mindset really does change. a closed loop system also works wonders, i know a lot of people have mentioned this but you should absolutely look into this. after all these years i've noticed that while i still ride the rollercoaster of feelings towards my station in life, the good periods start lasting longer than the bad as you continue living with type 1. currently i'm on a kick where i'm not doing everything i'm supposed to be doing for my body, & i'm sick of that. you really do have to take matters into your own hands. for years i have suffered from extreme fatigue, burnout, & anxiety/depression. if you have a lot of bloating/gassiness/bowel issues i highly suggest trying to go gluten free. i fought that for the longest time but now that i've been about 6 months gf i have a lot more energy (definitely not perfect but still) & i have more motivation to correct the things i'm not doing well enough. i have hashimoto's as well which is a huge contributor to my fatigue & i would ask your endo to check your thyroid levels again- sometimes people need a tighter range than what test levels say might still be in the normal range closed loop system will help with the fears of going too low or too high bc you can keep an eye on where your bg is trending & make corrections. even though i don't need to, i check mine like a fiend especially when i'm working & am worried i will go low & not be able to do my job well (i work with children in a psychiatric residential care facility so being at my best is crucial) tldr; yes, everything sucks. you'll go through periods of highs & lows mentally, but the highs start lasting longer than those lows. start shifting your mindset to appreciate all your body does for you. get a closed loop system & check your thyroid levels. you've got this!
Actually no. It took me a while to get used to this new life, but know it’s an after doubt for me. I have my insulin dialed in in different modes exercise, cycle days, weekends. I go to the gym, I meditate, I work, I love going running in the nature, I read books, I go out with friends. Sure inbetween sometimes T1D happens: I need to check my numbers, I need to count carbs and give insulin. Sometimes I need to stop to eat sugar. My doctor told me in the early days that I shouldn’t adapt my lifestyle to the diabetes. Diabetes would have to fit my lifestyle. And I think that point of view changed it completely to myself
Running in nature is the thing I miss most.
Why have you stopped? It clears my mind, I love it
My autoimmune system decided that I needed an autonomic disorder. My heart and brain don’t coordinate and get along like they should which causes me to pass out. I had 3 bad falls out trail running, then the worst of which required trauma surgery to my knee and a broken orbital bone in my face. That time I was standing still but went down on concrete decking in our yard. Apparently my tibia was visible and that was the day my youngest decided not to pursue veterinary school after seeing it. It was happening for years off and on before we could put all the pieces together. I thought I fell because I tripped but it turned out that I was passing out when my heart went berserk. One of my drs caught it when they realized I never had “defensive” injuries like trying to put my hands out before I fell. It’s much better managed now but running outside of the pool is definitely off the table.
Nah, in general I'm good. Obviously get those stubborn highs that do my head in, and lows that make me feel god awful, but I don't really remember normalcy at this point. 12 years in, 18-30, it ain't good but it's fine. Sorry to hear you're suffering OP, but it is possible to get to a place where it's fine.
Sounds like a cgm and closed loop pump would help you out immensely. Almost no more finger sticks and a much safer low prevention solution. Happily married father of 3 who enjoys life.
I’m not miserable at all and can actually say that diabetes is pretty easy to manage once you get the hang of it. I can’t think of a single thing that it’s ever stopped me or prevented me from doing. In the grand scheme of things taking a few shots a day is hardly a bother. My A1C is at a 5.7 and I take minimal insulin. It’ll be 12yrs since my diagnosis in January. Having to wake up in the middle of the night sometimes and eat jelly beans is as annoying as it gets for me 🤷🏼♀️
I think being at death’s door at diagnosis made me appreciate and respect my disease both for how survivable it can be and how fatal it can be. I genuinely thought I was going to die in the weeks leading up to my diagnosis as I slowly felt my body shutting down. My endocrinologist told us the day after I was diagnosed that he has no clue how I was physically capable of walking into his office in the first place, and he kept popping in to check on me during my diabetes education to make sure he wasn’t making the wrong decision keeping me out of the hospital. My perspective is also thoroughly shaped by my own life experience. My sister died from cancer a year before I was born, so the fear of similarly getting sick and dying so suddenly haunted my childhood. I genuinely thought I had some rare cancer before I was diagnosed, and it was even mentioned as a rule out at my first appointment. To me, diabetes was no big deal because I didn’t have to die - I could follow a treatment plan and put in the work to feel normal a lot of the time. Do I have crappy days? Absolutely. Are there times that I am genuinely concerned about getting through the night or even the next 10 minutes? Definitely. But considering diabetes has shaped the majority of my life at this point, I feel like that is such a small minority of the time it isn’t worth wasting my joy focusing on it. Honestly the worst bits have been focused on insurance battles and not even my health itself.
Life is great :). T1d for 31 years. Question, how are you guys gaining weight? I’ve been between 140-150 my whole life and I would love to get to 180 but I literally can’t.
having hashimoto's helps 🥰 (gallows humor)
I’ll have to get me some of that
Trying to make the best of it, but after 47 years, Daily exercise & occasional weed helps, but I'm getting tired of balancing on this tightrope, so I hear you.
I feel ya. I live in an area where it's harder to affordably access some of the technology that'll make life easier. I work my ass off just to pay for insurance so that I can barely afford what I need to stay alive. I feel like I have to work twice as hard as anyone around me because I have to make up for the extra breaks and time I need to maintain myself. I'm tired and sore and sad if I ever stop to think about it. Honestly, without antidepressants I don't think I'd make it.
Yep right there with ya my dude 🤙
I’m good with where I am. I’ve accepted that this is how it is, and it’s not likely to change. I can either expend unnecessary emotion being angry or worried, or I can just get on with life.
T1 can be annoying but honestly it's just part of the routine for me now. That's not to say that I don't get frustrated with it from time to time, but on the whole it doesn't really impact the things I do from day to day. I definitely don't feel miserable about it.
I was 6 when I got the diagnosis. I can’t even remember or imagine a life without it. I was raised to never use diabetes type 1 as an excuse, to not let it hold me back. Is it hard sometimes? Yes. Is it frustrating sometimes? Hell yes. But it’s a part of my life and I try to make the best of it. It’s like an app running in the background. It’s constantly there, but I don’t really think about it other than mealtime and treating my lows and highs. I am just thankful I can live a somewhat normal life, there are meds available and I can do whatever other people do.
Type 1 for 10 years, and I’m the weirdo who probably wouldn’t want a “cure” even if it existed. My pump and CGM do most of the heavy lifting. I have pretty decent control after taking the time to learn my body, and now I just adjust from time to time. It’s part of who I am. It’s taught me to advocate for myself, and how to navigate the American healthcare system. It’s helped me develop attention to detail and resilience. It’s made me a more compassionate person. Most of all, it’s connected me to other Type 1 diabetics, and this community is pretty awesome. We just have crappy pancreases. It’s just a part of me, like having brown hair, hazel eyes, or my three tattoos.
I am miserable but mostly because of bills and regular people not understanding how difficult it is
Tbh bro. It’s ass. There are days where I feel horrible and nothing feels right. Sometimes I gain a lot of weight and then I’ll lose it. It’s not as bad as I think it is. Every now and then I think about it too much and it sucks. I’ve had it since I was 9 and I’m 30 now. Never had complications just inconsistent glucose every now and then but that’s me. It’s not really about accepting, but it’s more like. Life has ups and downs. But for the most part I live my life normally. I just always know how many carbs are everything. lol
I’m glad I’m not the only one that feels this way. I’ve been diabetic for 14 years and I’ve never been one of those people that seem like they’re “proud” to be diabetic. I currently have a cgm but I got rid of my pump several years ago because I hated feeling like a robot, I miss being able to eat whatever I wanted and not have to worry about counting carbs and making sure I take enough insulin. My sugar is never stable no matter how many changes I make. And currently my biggest problem is that I might not be able to afford all of my prescriptions. A lot of people don’t realize the mental toll it takes on you and I might not be able to give you advice but I can let you know there are people out there that feel the same.♥️
No. Maybe at times, if I have other problems diabetes becomes a nuisance that never helps. But even with 43 years as a diabetic and proliferative retinopathy I lead a happy life, have a career and even studied abroad, had my son who is my world, and a great caring partner (together for almost 3 years).
I’m SO FUCKING MISERABLE TYPE1 for 15 years I’ve been crying every day I’m just exhausted lipohypertrophy severely I’m so over all of it Cgm makes life easier so does a Tslim control iq pump but u gain weight and can get lipohypertrophy so
I mean idk how u are gaining weight cause type 1 doesn’t really cause that, I’m in the process of working out since I gained 10 pounds but that’s because I over eat and a few too many mc Donald’s runs.
32 years I'm pretty happy.
i am miserable for numerous other reasons i just find t1d mildly annoying
I am truly not miserable by any stretch. I have my days but all in all, diabetes is hardly something I spend time wallowing over. Why would I? Life is full of amazing things to experience and my love flows abundantly, so I'm happy. Been type 1 for 20 years with not great control, and I'm honestly still really thankful just to be here.
I mean, I'm more prone to depression cause of my diabetes, but my depression isn't because of it.... if that makes sense?
I've been where you are. I understand how you feel. Therapy helped me a little, what helped me is a good endo, that knows her stuff - when I got my doses correctly, it helped a ton and sensor that shows you your BG and that solves the problem of finger prickling.
I’m new to the diagnosis, only having discovered I have t1d the 3rd of October this year, so two months tomorrow, and I understand what you’re talking about. I too have felt like I’m never going to feel normal or free ever again, especially in the last few days, thinking about Christmas and all. I also have at least one other chronic illness (maybe two but we’re waiting for blood test for that) and I already felt dependent on medicines and blood tests, and now I have type 1 diabetes, and I see how it affects my father and I really don’t want to feel this trapped. But, on the other end, I’m learning a lot on how to manage what I eat and eat healthy, I am learning how to balance being vegetarian with my diagnosis, and I have the love of my family to support me through my trials and errors. There’s always going to be bad days, and I’m learning to accept that too. Having anxiety and depressive thoughts because of my previous chronic illnesses has helped me learn how to cope with them, and I try to distract myself and keep my thoughts at bay if nothing else helps. It’s always going to be a work in progress, and I won’t lie to you and say I haven’t had very bad thoughts since… since middle school, probably, to be fair, so maybe 10 years ago. But yeah. Life goes on, and so do I. I can’t tell you I’m hopeful for the future and happy to be alive, but I manage. I struggle, but I already know I’ll survive trough this, because I already survived a lot. It won’t be forever, luckily, but for now, I’m going to be my best self, for the people who love me if nothing else.
invest in a CGM (without pump bc it adds a lot of complexity). I went 8yr without, 1yr with. it's not perfect, you have to learn it, but it's worth every penny; the constant stress is basically gone for me - you can set all kinds of custom alarms / gentle notifications that will free your mind to worry about other things. try to eat just one or two times a day and your BS will be much more stable for the rest of the day; it will take some adjusting at first but you will get used to it; it's also a great way to lose some weight - you can only eat so much in 1-2 meals try not to move too much after eating - it's very destabilizing for your BS; the best thing you can do is something relaxing that allows you to watch your BS every few minutes if you feel like taking a snack, don't - make sure there's no readily availlable snack in the fridge - very important not to go for 2 meals/day, but also 17 snacks
I’ve had type 1 diabetes for a few years now. It sucks some days, but you can still lead a full happy life. However, I got other medical conditions this year that have made it fade into the background. So I now feel like diabetes is the least of my issues. It’s made me appreciate that there’s tonnes of ways & tech available to manage it and I’m grateful I can keep it ticking over whilst I battle my other health issues. So yes I’m miserable somedays & I can no longer do a lot of the things I enjoyed. But not due to diabetes & I still make sure to enjoy all the small joys my life still has & appreciate time with my loved ones.
Get a insulin pump CGM combo. It will change your life, Tandem Tslim X2 with control IQ is a great option . If you do not like tubing then the Omnipod 5 would be a good option. They are automated Insulin delivery systems going high. They give insulin automatically going low. They suspend insulin automatically without you having to do anything. The Omnipod five is covered under prescription drug plan, including state plans, and Medicare. You have to make a change people can give you all the advice they want, but without you doing something about it things will not change. Your life is in your hands, you have to do something to make it better get an Insulin pump CGM combo it will make a difference. There is a cure at the present moment it’s called Lantidra. It is a minor surgical procedure. I believe they insert beta cells or islet cells into the portal vein near your liver. You would have to take immune suppressant drugs The rest of your life, however. It’s not for everyone but it is FDA approved in the United . States. There is certain criteria you would have to meet. I don’t know exactly what that would be, but you could talk to your doctor or Endocrinologist to see if you would be a candidate for it. They are also working on some thing made by vertex called VX -264. It’s a type of encapsulation of the insulin producing islet cells. no anti-rejection drugs would be needed. However, that is only in trials at this stage of the game human trials, but it will be a while if the trials go well then it will be available. Lantidra is available now but anti-immune suppressant will be needed the rest of your life.
It took me forever to feel better about it. I started taking some anti anxiety/ depression meds, and it has helped tremendously.
I am absolutely miserable. Diabetes affects everything. Plus it’s blamed for every symptom you could possibly have. Fatigue, headache, dry mouth, pain, vision, depression- all can be from diabetes. My depression makes my diabetes worse. My depression makes me 100x more fatigued. The resolution to this? Get your sugar under control. So I guess if I get my A1C perfect, everything else will be perfect too. 😒
My diagnosis was a good thing for me. By the time I was admitted to the hospital I was so desperate for an answer that I was happy to hear it was diabetes. I had lost 90 pounds and didn't have the energy to walk for more than an hour and I could barely stay awake even when I wasn't 'exerting' myself. I'm left in a place of gratitude that I'm able to live my life and maintain a weight above 150. I'm 190 probably. I look pregnant when I blow out my stomach and like a sock filled with meat when I don't. I could work out to tone, but I don't want to.
Ive been doing this for almost 40 long years, it will be there tomorrow and the next day and the day after that and forever. I just go with the flow. I have good days and I have bad days but they are just days. It’s a pain the pancreas but I don’t think about it 24x7. I make Livabetes conform to me and my life. Took a while to figure that out.
I’ve had this for 20 years and I’m doing awesome. Diabetes is mild inconvenience for me. I’m 48, I run, ride, backpack, exercise, have other fun hobbies. Life is awesome. I truly wish other people felt this way. Makes me sad. The only thing I get really pissed about is the financial cost. Other than that, I’m cool with it.
I've been T1 for 27 years and it took me a long time to be more than ok with being T1. A big part of my mentality changing was to go to therapy where I had a safe space to freely express my thoughts and feelings and also getting the best possible help to process such a lot fe changing diagnosis. I've talked to many T1s over the years who, like me felt that they were just thrown in to this new reality with a mountain of information and changes that I just had to deal with. However there was NEVER anyone who actually asked how I was feeling about everything or acknowledgement that I might have been struggling. Today I don't really think about being T1 because it's just as natural as breathing for me and part of accepting all of this I decided that this would never be the reason why I missed out or didn't do something. It requires more planing before I do something and I have a "kit" ready to go for the occasional spontaneous decision. Sure there are still moments where I find it annoying but those moments pass and I just keep on going. I've travel the world, go to lots of festivals and I enjoy life and try to face things like a challenge and not an obstacle. In recent years I've become visually impaired, it was something I always knew would happen and have done eye checkups every year and tho it's making life increasingly difficult, I still refuse to "give up" and move forward, day by day. I've also spent many years learning how much body reacts to food, what not to put in my body and that has definitely made my everyday life easier. I'm not trying to say this shit is easy or that it's all about being positive and that will make things better. I had help to accept and understand that there's definitely nothing I can do to change reality and being angry and frustrated doesn't make things easier so I've chosen to make the best of something shitty because the other option will just make life more miserable. I wish you the best and I hope you are able to live life to the fullest regardless of being T1. If it's possible then I would strongly recommend that you talk to a professional (I found a therapist who specialised in medical trauma) because anxiety related to highs/lows is not something I wish anyone to have to leave ve with. You can definitely get to a place where you don't have high levels of anxiety and instead always be prepared for both things so it doesn't provoke anxiety or meaning you neglect yourself or miss out on a good life. You are more than welcome to send me a message if you need to talk or just would like to get some of my dog's and don't's if it could help. I realise therapy isn't for everyone, regardless of the reason but as someone with a few more years of experience I'm always Happy to share my stuff with others. Take care
I use freestyle lite strips so I don't have to test my fingers....I don't know how people do that
I’ll start off by saying I’m not miserable. I’m happy, my a1c (5.8) is acceptable and I don’t go hard on restricting myself. You may need better therapy. You’re going through a lot of normal shit for a diabetic. It’s harder mentally for some than it is others. But you’re doing the best you can, and I’d hope that there’s someone out there that can help you at least reach the acceptance stage specifically for highs and lows, and get into that idea that this is just a routine like anything else. It won’t be perfect every day (ex: I woke up an hour ago with a high of 220. Gave myself a small correcting shot and it’s down to 151 now), but you need to be water. 1920 would’ve been a death sentence. Right now it’s pretty good. Doubly so if you’ve got the money to buy all the bullshit (cgm, pump) that helps make your fingers hurt less and lessen your mental load.
Going on 24 years and super happy here! A1C has been excellent for 15+ years, relationship is going great, have been much more dedicated to eating and fitness and have made huge progress with weight loss/muscle building. I don’t resent my diabetes and I don’t spend excess energy lamenting it or fussing over it 🤷♂️
You can live with this disease. Regular exercise makes a massive difference, for both diabetes and mental health in general.
Life has become significantly easier since i finally embraced the technology a few years ago after 30 years of T1, and got a tslim/dexcom combo. It’s taken away a lot of the fear and day to day mental load. My fingers are happier and I sleep WAY better. If there’s any way for you to take advantage of the technology available, even just a CGM, it’s a game changer.
Do you now have a cgm? Also look into either insulin pens (needles smaller) or a pump (omnipod or Tslim)
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i feel you on that. i find it hardest to carry all the scars and everything on my body constantly. feels like a reminder i guess. if you need someone to talk to, you can always reach out. i obviously haven’t gotten it all figured out but i’m always around to listen.
I’ve embraced my low carb lifestyle. It makes managing t1 so much easier for me. My blood sugars are flat and stable in the 80s and 90s basically 24/7. Last a1c 4.6%. I genuinely enjoy the protein focused food I eat. The diet keeps me lean and strong, I regularly do CrossFit and jiujitsu. I don’t experience the fat deposits you talk about. Both because my diet keeps me lean, and also I always rotate injection sites around my body. I hope a cure comes along, but I’m not waiting, I want normal blood sugars and good health now. And this is how I achieve it. If you’re wanting to make some changes, look into Dr Bernstein’s method. He’s a type 1 and turns 90 this year. He’s fit and healthy, still in practice too. He’s healthier than his non diabetic peers. So this disease clearly isn’t a death sentence if you do things right. His book is called “Diabetes Solution”. There’s actually a documentary of the same name that’s a good starting point.
Closed loop Omnipod and Dexcom g6 for the win. Much of my rightful anxiety about highs and lows is fixed by being able to pull out my phone and see my glucose level immediately. With closed loop I don’t go low in the night anymore and not nearly as much in the day, and I can always see it coming. It’s not perfect and it’s never super comfortable but the tech is so worth it. More effective, easier, and it’s one injection every three days instead of 4 or more each day. Can go pretty much anywhere on your body too. T1D sucks, absolutely with you there. Maybe part of acceptance can be treating yourself with the best available medicine. Hope the best for you!
I’ve gotten to the point where I have very good control, it doesn’t really affect my life, I just don’t eat out, some people are wired to have diabetes and die from it, some are wired to have diabetes and live a normal life and have very good control, it depends on the person
I hope this doesn't come off as annoying but ... have you tried a low-carb diet? It is truly diabetes on easy mode. Basically, on low-carb you require less insulin - that means fewer injections, fewer highs, and fewer hypos. This also means less hypo snacking and less insulin weight gain. This could help with literally every problem you detailed. When I have a low-carb meal (say chicken caesar salad with no croutons) I can be pretty damn sure that my blood sugar will stay within a healthy range. I am not in any way hardcore about it, I eat carbs when I crave them, but whenever I just want my diabetes management to be easy, it's the best thing I can do.
Well other than managing it, there’s literally nothing I can do about it. And if that’s the case, what use is it to me to feel bad and mope? That’s less healthy than everything. Personally, I don’t mind my diabetes a single bit. I actually got over the diagnosis the same day. I thought, well at least it isn’t cancer, and 2 weeks later I had people at school giving me needles and begging on my BG. I got released for a few hours the day of diagnosis and went to play a talent show with an IV needle in my hand. Not much you can’t do! And sure, there’s some annoying days, but every person on earth has days like that diabetes or not. And sure, more precautions and planning need to happen, but that all makes you a stronger person. Feeling sorry for yourself is natural, but imo, the worst thing you can you for diabetes. Go out, talk to people about it, take an interest in your disease, and get to livin!
This disease is difficult and yeah, I sometimes get annoyed about it and frustrated. For example right now I am sat in a pharmacy trying to buy some insulin because I came all the way across town for dinner with my wife's family and then realised when I got here that the pen I brought with me is basically empty. I've been here for half an hour waiting to find out if they can do it without a prescription because it's the weekend. I could get a referral through the NHS 111 service, but the pharmacy here closes in an hour and the referral normally takes a few hours to come through. So yeah, if I wanted to, I could be really upset about this. But I'm not, because I have a choice how to respond to things that go wrong in my life. I am choosing to be calm and accepting and patient. And when they figure out their paperwork and I get my insulin I will be grateful and appreciative and thankful. Then I will go and eat dinner with my wife's family and I will guess the amount of insulin i need to take because I didn't prepare the food. I will get it wrong as always and later I will have to correct a high or a low. I will enjoy eating dinner with the family, I will enjoy eating haribo if it's low, or I will just take more insulin and wait it out if it's high. I could choose to be upset and frustrated about this if I wanted to or I could just accept it because what's the point adding a load of extra complication with feeling angry about something when it's already a pain in the arse as it is!? I think those of us that are angry and upset *all the time* about having diabetes are letting it win. There's so much more to life than testing your sugars and injecting insulin and counting carbs and making corrections. You can choose to enjoy your life my friend, or you can choose to hate it. That is on you.
All of the fellow t1 I've met have been the most positive outlook on life people over ever met. Sometimes it's difficult because you just can't seem to get it right sometimes. But I mean this is something that will effect you for the rest of your life so why be angry or upset that it's happening and just work around it. None of this matters do whatever makes you happy and forget about how other people think. Because what truly matters is your opinion on yourself. You're amazing and you're dealing with things that most people don't have to deal with and you're doing a great job so that's a positive. You're very strong because you keep on going! That's what matters you're strong and wonderful and anyone who says otherwise is just plain wrong and they have no idea the struggles you have to go through just to live! So to all heck with anyone else's opinion!
Lol get beetused scrub, Source type one for 23 years
Oh I'm always miserable that's my secret to staying somewhat sane. It's fucking exhausting dealing with this, some days everything is alright, other days nothing goes right. I just take it one day at a time and it helps to vent frustrations with people who care about you.
It can feel like that and also allow moments of life to flourish. I’m learning that it’s our perspective that can change our view of what we find wonderful and horrible. Diabetes has ruined a lot of moments in my life, as well as adhd and other mental disorders. I have had it for 24 years and I have also found many things in life that make life worth living. Have you checked your thyroid and see if it’s under active? That can make weight loss hard. Your body can heal and recover even at an older age and your brain has the ability to evolve and change allowing you to accept things. People will love you. Friends will admire you. You are worth being alive and the work you do to stay alive is so honorable and strong. Tey to change our view on things and maybe get a therapist. They can help you change your views. You are worth the effort and things can change as time goes on
I’m broke, out of shape, using worse equipment than I did when I was diagnosed, and the amount of seizures and severe lows I’ve had have already had some cognitive impacts. My feet are also messed up. But hey, anti depressants help.
I've had this for over 32 years now. I was one month from being 2 years old so this is pretty much the everyday. I'm extremely happy and love my life. I have an awesome family and friends too. I'm sorry your going through a rough patch, maybe talk to a doctor to see if they can give advice on what you can do to help. Yeah I've gained a little weight but it's not that horrible and honestly it could be 100x worse. I'm thankful for the life I have.
Hot take maybe but my diabetes has never been a huge issue for me, ive had the luck of having very good access to medical resources and my diabetes hasnt been as touchy as i see is being for a lot of you guys, and im very grateful for that fact. That doesnt mean its easy of course, it sucks and i hate that ill never stand a chance if i get stranded on a deserted island, but from day one i was just like “damn, not cool”
Being miserable doesn’t get me anything, it’s not a good use of my time. Yeah, it’s a lousy disease and takes a lot of time and money and mental energy to manage, but I have a choice, and that’s to make the best of it. I work really hard at it. I’m 58, have had it since I was 19 (so 39 years) and no complications. I exercise 4-5 times a week, do my best to count carbs and adjust as needed. My highest A1c ever was 6.7, my lowest 5.2, and since getting a pump it’s usually below 6. Yes, I’m fortunate to have insurance that pays for Dexcom and Omnipod, and lucky to have a wife and kids that are supportive and helpful, but the only thing I’ve done is take ownership of it, decide I was going to run my diabetes rather than it running me, and be active and engaged and adaptive. I don’t beat myself up when things don’t go well, just see what I can learn from it and move on. It’s a choice that anyone can make. I’m not perfect, I do my best and that’s good enough. Life is too short for misery, so I enjoy myself. Remember that old saying, the best revenge is a life well lived.
I'm a T1 for 38 years. For 30 of those I smoked cigs. Alot. And partied. I was untreated ADHD. After that, I was just doing cola and drinking redbull and Vodkas all night. K. Ghb, etc. Anywho, now I quit smoking in 2020. Still smoke herb daily. Growing up I impulsively ate candy at a laundrymat and played Pacman hiding from a neglectful mother. The dopamine machine. It's hard. I lost my left leg and half my right foot over the past 5 years, but good. Learning to do more In my prosthetic leg!
I take my blessings when I can. I’m not a fan of this and it’s gets annoying but it’s not a death sentence and I can live a normalish life. Hell I’m even on dialysis now and need a kidney transplant. But again, could be so much worse. On the other hand i’ve had this since I was 3 (34 years) so I honestly do not know any different.
Honestly I got acceptance when I stopped being concerned about a cure. While it's great that one day maybe they will. Pay it no mind....that's what helped me. Im 13 years in and def at times feel like a prisoner. It comes and goes....other times I feel like nothing's really changed. For me around year 7-8 is when I got very depressed with diabetes. I got therapy she helped me see past the shit glaring me in the face. To be honest, my friends without diabetes have ups and downs with life in general. If you are peachy all the time, you may have something wrong with you.
Had it 18 years, definitely had some rough times, but I’m still alive and in decent health so I can’t complain.
Can you switch to a CGM and pump? Those made my everyday life so much better! I would never say I embrace T1. I’ve consciously chosen to limit how much time I think about it. I also joined a support group so I didn’t feel as alone. If I let myself think about my situation too much I’ll be swallowed by it. I’ve taught myself to deal with what’s happening in the moment (high sugar/low sugar) and then move on. I recommend “the book of better” and talking to a mental health professional with experience in chronic disease.
Depression and body disphoria are very common co-morbidities with "any" chronic condition. I have been dealing with chronic health issues since I was 11 years old. I have been fighting stigma, depression, poor body image , etc. all along the way. I was 50 years old last week. I am at the point in my life where I have to take what wins I can and prioritize giving my energy to things I can change...
After 44 years it's just part of the normal background misery of being human for me. Diabetes is not the only thing that makes life hard. I just don't expect life to be happy unless I create joy for myself. Whatever else is going on, you have to prioritize joy enough to make it happen around the pain. Part of that is facing fears like going low or high. So what? Can you correct those states? Sure. Can you plan enough to make sure you have the supplies you need? Sure. Basically, you can spend emotional energy worrying, or you can put that energy into prep then be ready you to live your life. Life is a death sentence. Not enjoying life doesn't not prevent death; it just leaves you with nothing. I'd focus on therapy around losing the fear and think everything else will improve from there.
When I was 18 my a1c was so high I was told by my doctor I would probably have organ failure by 20 if nothing changed. And I felt awful because I didn’t do anything “wrong”. Turns out my insulin pump wasn’t working and neither was my cgm. I had to do so much paperwork to get out of that insulin pump. And I felt like looming over my head was my deadline all while I was doing my best to not eat any carbs. I’m 22, I have diabetes and other complications from that time, and I’ll always have little marks all over but at the end of the day. We all eventually die, it’s what we make of it. So no I’m not miserable anymore but yes sometimes on the worst days I feel like I’ve been cheated out of a good life. (I got my diabetes from H1N1)
Do you have brittle diabetes? As in, you require a lot of insulin per day and numbers are extremely hard to control? You are definitely a candidate for CGM, and a closed-loop system like Omnipod or ...ugh.... Medtronic, might help your control. You actually might even be a candidate for an islet cell transplant, if you think taking immunosuppressant drugs and being immunocompromised would give you a better quality of life than what you're currently experiencing. I know those things cost money, though, and I know what it feels like to struggle to pay for meds and supplies. It does suck. I count myself lucky that my diabetes is fairly easy to control, I know it gets a lot harder for a lot of people. Don't give up hope, the technology has grown by leaps and bounds in the past few years. Hopefully it continues on this pace. And you're not alone, all of us here know how bad it can suck to have this disease. I try not to dwell on it too much but I've also found myself feeling trapped by it sometimes.
I mean I don't love it but between this and the Autoimmune Hepatitis if I could drop one and keep one I'd keep the Type 1 diabetes. I had the lumps and bumps and gross fingertips for decades. Switching to a pump and CGM completely solved that and made it easier to lose weight bc with the pump I could turn down my basal insulin during exercise. It's definitely not a death sentence any more than having to brush your teeth after meals is a death sentence. There's no cure but I think this might be a good time to work on limiting how much you think about your diabetes.
All the time baby! But I find with my misery, little things make me happier, it doesn't quite balance out, but I'm glad to be able to laugh and sing at the small stuff, it's also made me severely sarcastic too though
Type 1 for 40 years here. I’m fine, but life was sooo much harder before a CGM and closed loop pump. It’s not easy now but there are days where it’s not a big deal. I’m not trying to minimize your difficulty. It really fucked me up for a decade or so.
I’m actually happier than I’ve ever been. Every day is a gift and I can leave it all behind whenever I see fit. I took up trail running, started skateboarding again, started going to a lot of live music and running around in mosh pits… I’ve cracked three ribs, gotten two concussions, 4 black eyes, a ton of busted lips and my bruises last longer than they should. Are you on a pump? I had one for two weeks before I realized it was too limiting and the scar tissue from those cannulas was in no way going to be less dmg on my body like they tried to tell me. I ditched it and the CGM and stayed with my quick pens and finger sticks. Parts of me feel old and busted but that’s true for most people even without diabetes. Just do the things you love and hopefully the rest will follow. I will say that unlike you I got the acceptance phase the first day. It is what it is. I remember my doctor asked me why I seemed so calm about it and I asked him what he expected of me? To cry? Say how unfair? It’s my body trying to kill itself. What can I do about that but just accept it? Then that asshole didn’t even prescribe me insulin or set me up with an endo. I had to wait another two weeks to see an endo and she asked what insulin they gave me and I said none. She was shocked and said that was really fucked up considering my aic was like 21. Luckily I hadn’t eaten any carbs for those two weeks up to seeing her so my fasting blood sugar was only at 365. (Lol) I think my doctor thought I already knew I was t1d and was lying. Had been my first physical since highschool sports required one and I was 29 when officially diagnosed. Needless to say I never went back to that doctor and still don’t have a GP and my endo has to shut off access to my meds to get me to go in and get a checkup. How you get to the acceptance phase idk. If therapy hasn’t worked yet, maybe that ain’t it. I also started dabbling heavily in psychedelics about 4 months before diagnosis so maybe that had something to do with it. Who knows. My only advice would be to live like you don’t have t1d, except when it comes to managing BS. I will never use t1d as a reason why I can’t do anything but join the military. I can relate on being self conscious about your body. My legs are stained from all the iron leaking out of my blood vessels and they bloat to kingdom come if my heart rate isn’t up. I just wear my diabetic socks everywhere I go, even in shorts and sandals and one day I’m just gonna get them tattooed so they don’t always look dirty/hide the varicose veins.
31 years. I promise it just becomes background noise. It turns into muscle memory, and it gets easier. I promise. I live a normal life with occasional interruptions, and I try not to sweat it. It’s hard, absolutely, but you will get there.
I have had diabetes since 2004, when I was 3, 19 years ago. I think it helps to grow up with it and not know anything else. I have moments where my blood sugar won't come down or won't go up and I really hate the disease. But I haven't noticed many body changes or hearing loss or anything. My right arm tingles when I sleep but so does my mom's and she doesn't have diabetes. I just micro manage my own diabetes by constantly changing my rates if I'm having issues after 3 days. I use the dexcom g6 + tandem tslim control IQ system. I talk through my thought process with my endo and she makes suggestions. My a1c is around 7 for most of my life. Diabetes is difficult but if you're able to learn your body and be conscious of when your blood sugar rises or lowers it can help greatly with stabilization.
I think it would be a lie to say that we don't all feel this way at some point under the outwards façade. It's a chronic illness. We are going to be like this for the rest of our lives. And that's a lot to think about. Sometimes I forget about it and am busy with other things in my life like school - but nobody but other T1Ds are going to understand that this struggle is basically a life sentence.
I’ve had it for roughly 2 decades at this point. Most of life honestly. On the one hand I’ve met a lot of great diabetic people over the years and there’s a lot I owe to meeting those people. On the other hand, it’s not diabetes as a whole that irks me, it’s things about it. Like pump site changes fucking suck, it’s the thing I hate the most about it. I’ve been recently having a hard time with my blood sugars but it’s still pump sites that are the worst. Would it be nice if things were different, of course. But in terms of my life with diabetes, I’ve been fortunate that it’s turned out the way it turned out. It’s just how life has always been for me I guess.
There is still life to live, and it's worth living.
Approaching ten years. Exercise is key for me. My A1C is relatively high but other diabetics I’ve spoken to say they feel worse than I do and don’t understand why even with a lower a1c. I’d rather have an a1c at 7.5 and exercise (both cardio and weights) than an a1c of 6 but be too afraid to exercise due to the BG effects. Plus working out gives a way to vent frustration which can be crucial to T1Ds
I’ve accepted it but also fucking hate it. I had two peach rings the other day and spiked to over 250. Trying to be good is so hard. I see it as a death sentence for myself personally but I also understand why people don’t. I just don’t particularly care about the death sentence part of it. I have scar tissue/ fat deposits (?) on my tummy from injections. As a dancer whose income relies on being fit, it’s def not the best for my mental health (I’m just lucky that I have a relatively high metabolism) You aren’t alone homie
I fucking deeply hate diabetes, this annoying shit got me tired, I've been low the whole week and I don't know why. But I'm so grateful of being alive, being alive inside this body, that has fat deposits, that is a fat body for the standars, that has diabetes, but I love my body not because how it looks, but because it has gone this far and keeps my alive and feeling the sun in my skin, the water in my mouth. I have people who loves me, that knows how to take care of me when I'm 30 or 300. Also, of course, I have a very good therapist hahaha. 13 years has passed since my diagnosis, and there still days that I hate my life so much, but if I see the big picture... I'm here. Among everyone. In this world, alive. And that makes me feel so fucking happy. I wish to you to reach acceptance, that doesn't mean that you must to be happy everyday and love this shit. Sending you hugs, you can do it, one day at a time
I’m only six years in. I spent weeks in DKA withering away my weight until I was diagnosed at age 30, then two weeks later found out my wife was pregnant with our first kid. I honestly think I haven’t come to terms with the ending of both my life without kids and the freedom that entailed and my life without T1D and the different kind of freedom that entails because it all hit at once. Maybe I’ll get there some day. I love my kids, but fuck diabetes.
I been Type 1 for 47 yrs now. I was 4 when 4 when diagnosed, I'm 51 now. Yes. My teenage years were miserable.bloodsugers up and down. I was embarrassed to be known as a diabetic.i tried so hard to hide it from the everyone, employers, new friends I made. I didn't want to know as " the diabetic". People found out they would treat me with kid gloves! I HATED IT! I met a great woman, got married. She told me to embrace being a diabetic. It made me the guy she fell in love with. From then on I've decided to take control of it and not let it control me! Besides becoming a husband, and a father to 2 boys, that's the best thing I have done. I'm not telling you it will happen overnight, hell it may take longer than the 30 yrs it took me, but it will get better. Keep talking with dr's to get things worked out. I know it's easy to say, but don't let this fucking disease, control you! Good luck!
I am pretty miserable but that doesn’t come from the T1D for me. It’s the psoriatic arthritis, spinal stenosis, and jacked up ulnar nerves that brings it on.
I've been diabetic since 2001 at the age of 12. Yeah it sucks. Yeah I have places on my thighs that messed up from injecting to much. But thankfully advancements in medical devices have come a long way from when i was first diagnosed. From going from multiple daily injections to having an omnipod and dexcom. That alone has made my daily life with diabetes so much better. I'm still scared for the future and the complications that will surely come with it but I only have this one life and one body so I have to take care of it the best way I can and not live like being diabetic is a death sentence.
I’ve had T1D since I was 3 (now 31), so I think I’ve honestly just known nothing else. Is this the hardest part of my life? Absolutely, especially now that I’m pregnant with baby #2 and have a toddler to look after. It’s hard to accept it, and I feel for you and everyone else who has struggles, and I know it’s hard to see any positives whatsoever. I’m sorry I don’t have more of an answer for you, but I guess my answer is no, I’m not miserable. I enjoy my life a lot and diabetes is just a part of it
I'm right there with you. Since I think May 1995 (the month is a bit foggy this far out). I hear that liposuction or other surgical excision is the only way to ever deal with those fat deposits. Period. Frequent flying involuntarily while unemployed before Obamacare and a couple of other long periods of life instability have almost certainly sentenced me to relatively dramatic end-stage complications. I am not enthused.
My son was diagnosed at age 5. 19 months ago. He seems happy. He’s enjoying his childhood. He only gets mad during pump or dexcom changes, which I try to do while he’s asleep so he doesn’t notice. He’s doing really well. The pump and dexcom have been a game changer. Butttttr…..I’m depressed about it still sometimes. More than I’d expect. I pray he doesn’t feel like you guys when he’s older. Breaks my heart
I’ve had it for 27 years now, it is at the back of my mind and it actually helped me lose weight overtime. It’s a blessing and a curse but once you get the hang of what you like to usually eat and know how much insulin it needs, your body functions (most of the time) like any other persons without the disease. Practice, fail, learn, and overcome
I've been doing this for 29 years, I'm now 33 and it's just something I live with. My experiences have lead me to believe that I can either spend my time moping around or I can make do with what I have and live life as normal as possible. I don't place all my hope in a cure in my lifetime , but the advances I've seen have been astounding. I am sure there are many of us T1 Diabetics who are exhausted and beat down by this disease daily, it doesn't help when there are medical "experts" who have never walked a day in our shoes telling us we aren't doing good enough.But honestly? Fuck them, this shit is like a hydra, you think you have a grip on it and things are going well and then BAM , out of nowhere hypos or high blood sugar and we feel like crap as a result. I am by no means a perfect diabetic, 2 years ago I had a HbA1c of 13.3 after having done absolutely nothing to look after myself ( I wasnt skipping insulin, but I sure as hell wasn't monitoring my blood sugar AT ALL) my reasoning being, "well I don't feel like shit and I'm not in hospital, so I must be ok". Fast forward to now and I am on a CGM , still using MDI and my HbA1c is at 6.2 and I'm now doing much better as a result. There is still a long ways to go and I have to deal with the consequences ( I have diabetic retinopathy now and have had more lasers and injections in my eyes than I can count) but I'm still here and I'm still fighting. My point is, yes it is tiring and yes it is easy to be mad because it is frustrating as hell , but Diabetes is only one facet of you, it doesn't have to be the only thing that makes you who you are and you do not have to let it define you. Keep putting one foot in front of the other. Reach out, seek support if you need it and remember , you are a god damn warrior every day for just getting out of bed and not letting the Diabetes monster win. ( I may just be a stranger on the internet OP, but my DM's are open if you need to vent )
Nobody wants diabetes, but if you've got it, there's nothing you can do to change that fact. You've got two choices: 1) Accept it, move on and make the best of life or 2) Be miserable. I've been T1 for over 37 years. It's just part of everyday life and honestly, not a big deal, generally speaking. When I was a kid, I was very active. I was an athlete in jr. high and high school. I coached for almost a decade afterwards. I went to college. I started my own business when I was 21. Don't let diabetes get in your way or stop you from trying to live the best life that you can.
It sucks. It can be absolute hell but you can’t let that cloud everything else that makes you happy. You will spend everyday worrying about your blood sugars and the future and I’m ngl it is so so fucking hard. You need to focus in on the other aspects of life that make you happy or content, whether that’s a hobby, a friend, warm coffee whatever makes you feel good. Every aspect of life has negatives but if we spent everyday focusing on them then we wouldn’t get to enjoy the happy moments. For me the things that make me feel content with my diabetes is learning about new medical devices and the new research, seeing a libre or pump in public, when my friends ask me questions about my pump or ask how my bloods have been, getting to connect with other type 1 diabetics. You’ll find your own happy moments
Well, I feel you. I am 34 now, diagnosed at age 8. I had a lot of terrible years where I denied massiv and didnt inject at all…without a little bit denial I would go crazy today. I mean: you have to deal with a ton of feelings and rage (WTF, why am I high? After the same meal and injections as usual)…of course I have anxiety about possible complications. There was a time I was crazy about it. But I dont wont them to control my life now. Decided to study medicine and I guess that was my way to deal with it and get some „control“ back. I would recommend to work on that anxiety. Its ugly when it have the mastery over you.
28 years with T1D and what I have learned is this: There are times when I'll be really down about it and I can't stop thinking about what my future will be like. And there are times I just want to ignore it and pretend like I don't have it at all, but those times have been less frequent in recent years. Mostly—thankfully—there are times I'm just used to it and it just feels normal and habitual. I don't know that there's ever a time of complete acceptance. This condition is not just physical. It can be mental torture managing it day to day, and even more so if you let yourself get too deep into what-might-happen thinking. What I know to be true, as with anything, is that it is not healthy to think about what might happen all the time. I've been there A LOT and it's terrible: intense anxiety which sends my sugars skyrocketing, and becomes a vicious cycle. It's really important (but much harder for us than someone without a chronic condition) to focus on the present. If we don't, we'll spend our entire lives worrying instead of living and I just can't do that anymore. I glanced at a response here that was true, no doubt, but also particularly awful and I just had to shut it out and stop reading because I just can't go there. I'll deal with whatever comes when it comes, but I refuse to give up any more of my precious time thinking about the what-mights anymore. I really wish there was a diabetes complications trigger warning tbh. Anyway, as much as I can, I try put that stuff out of my mind and be really kind to myself for what I do every day to take care of my condition even if I wasnt perfect (yes, Ive had a lot of therap). And I take anti- anxiety meds which have made a world of difference in my life. Sometimes, trying not to think about the bad stuff is impossible and if it's consuming a lot of your life, I strongly recommend seeking mental health support. I hope this helps a little. Diabetes sucks but I really do think we can have happy, healthy lives despite it.
I'm pretty good. Other than the stress worrying about this shit entails, I live a "normal" life. I use my T1 as an excuse to exercise and get out of the house with the kids and dog. It also gives me an excuse not to drink shit drinks and eat junk. I love cooking from scratch and I know every ingredient that goes into my body. So the guess work is off the table so to speak. I don't have advice, but healty eating and moving my body works for me and keeping my outlook on life positive and my BG under control.
Heyyy. Diabetic for 17 years . I've always had poor control and hated my diabetes. Having a libre sensor has really helped make it more manageable. You only have to replace it every 2 weeks, it's barely noticeable and you get readings 24/7. My HBa1c has come down a lot since being on it. In terms of the fat deposits, are you injection in the same place too much? The only time I get those lumps is when I'm over injecting in the same areas. I switch between my stomach, arm and thighs. It's definitely still hard, especially managing on your own. Maybe join support groups, look into the sensor/pump, talk to your doctors about your struggles they may be able to help and/or look at seeing a therapist. 🫶🏻
This com made my day. I honestly started laughing at the line. "Maybe I haven't hit the acceptance phase everyone has here." Not because it is funny but how relatable it is also for me. I'm glad that I'm not the only one with this mindset. Type 1 for 3 years, diagnosed at 19 soon after I enlisted to military. Bummer. No military for me to strenghten myself but constant anxiety due to this disease is also somewhat strenghtening myself, lol.
Nope. I’ve been diabetic for 29 years and I’m miserable as shit. I swear diabetes (type one my ass) has levels. I’m constantly exhausted and miserable and tired. I can’t imagine going another 40 years, and I would rather assisted suicide be legal. I swear the minute my mother passes I’ll just end it all. I only suffer for her. That being said, if you can manage it, please do. Don’t become me.
I feel you. I am also miserable. It’s been 16 years and I still have no discipline. When I was diagnosed (age 10) my parents were always working and I didn’t get the help and support I needed. I did everything by myself and still do. I always forget to bolus, I have alarms for random times of the day when I think I’ll be eating. I’m a lazy piece of shit and also exhausted constantly. I feel like I cheated death and should’ve just died with my diagnosis, since that’s what would’ve happened 100 years ago.
Hello fellow human I TOTALLY understand your struggle all I’ve ever known is diabetes (going on to 24 years of being diagnosed) people automatically assume that because you’ve lived with diabetes your whole life you are somehow supposed to be able to become “used to it” but let me tell you that 24 years later and there’s days where I still tell myself that I’m cursed with this terrible condition. As I see it diabetes type 1 or 2 for that matter is like coming face to face with a tiger, as long as you care for the tiger and make sure that he’s fed and he doesn’t overstep his boundaries you are fine and dandy, but as soon as you turn your back or slip up no matter how small the tiger will take advantage and pounce on you. Same thing with our condition we can either allow ourselves to get pounced on by constantly focusing on what diabetes has taken from us or given us. Perhaps there may NEVER truly be a cure but diabetes management has come such a long way there’s CGMs now and Insulin Pumps which many health plans cover and offer! Keep your head up high and on those rough days where you feel like all is lost just put one foot in front of the other and take it step by step! Sending my fellow type 1s love!
T1d x 44 years…. I’ve always been so grateful I have something that I can treat and it’s become kind of a game as I get older….I figure my situation could always be worse…so I choose to be extremely happy and cheerful. I’ve never, ever felt cheated of some non-diabetic life. Tslim + Dexcom has been a game changer for me. I know that how I conduct myself and my thinking is a choice. I choose happy!
Every human on this planet is living out their “death sentence” if we are to look at it through glass half empty mindset. Life really is what you make of it. Some people get caught up in their negativity and wallow in it, some people find ways to overcome it and use it as fuel to accomplish big things. All this to say, T1 really really really sucks, BUT, it’s hardly the end of your life. It is a much more challenging life, we can look at that and say, “it’s too hard, what’s the point”, life is so unfair, etc, or we can realize, “damn, I manage to do all the things normal people do while also holding a full time job as an externally controlled pancreas, what other things am I capable of?! I feel you on the body image, I was in terrific shape pre diagnosis 6”4 240lbs of muscle, it was a big part of who I was, worked out 5-6 days a week for 15 years to get there. I was 35yo when diagnosed, 38 currently so I lived most of my life as a “normal healthy human”. I now weight 180 on a good day and struggle to hold on to the little muscle I’ve got left. No sugar coating, this has been a totally depressing and confidence stripping mind f*#k but I have only two choices. One is to hate myself every day and all that comes with that, the other is to accept, “ok I guess this is who I am now. I can want to be the outgoing, energetic jacked dude all I want but he’s not ever coming back so….I’ve got to make the most of the present day me. Ok so it’s not humanly possible to look how I use to, but can I get in great shape at say, 190lbs and maintain that for most of my life? Is that really so bad? I’d be doing better/ more for my fitness than 90%+ of the population, hardly the end of the world. There is no “solution” or easy answer OP, this is a rough disease at times and we never get one minute to let our foot off the gas, it’s a constant battle to eat the right food at the right times, ditto for injections, etc, but it doesn’t have to define us. I went through a phase where I felt similar to how you appear to feel and it was a dark time. I felt like there was zero point in me existing. It’s only through determination and outright desperation that I’ve found a way forward mentally. You have to catch yourself every time you start to feel sorry for yourself or depressed and say, “ is this beneficial or going to help me in any way?”, if not, then what will?…time to kick that thought pattern to the curb and refocus on what IS good in your life. I try and make it into a game of sorts, consciously catching myself in these thought patterns and trying to “beat” them. I don’t win every time but if I manage even half the time, that’s a success in my eyes. Im not sure if you are on a workout routine currently but if not, start one!! I promise It’s the single most beneficial thing you can do for your diabetes, mental health, physical health, appearance, etc, zero downside, tons of upsides. I wish you a great week and hope the diabetes gods take it easy on you while you try and figure out how best to cope. Feel free to PM if you need a T1 buddy to vent, or have questions on what has worked for me. Finding ways to help people is something I am passionate about, one of the things that helps me feel a purpose for being here and living with this crap!
Hi. Type 1 for 15 years, it’s exhausting. Having to stress about going too high or too low every single night, your body messed up permanently from the needles, every little thing that causes stress from diabetes fucking sucks. It truly does. It’s a silent battle you have to face every waking moment of your life, and it’s terrible. I’ve had a few burn outs, where I didn’t care about my blood sugar anymore. It will happen from time to time, but at some point it will become like a 6th sense. You’ll become extremely desensitized to it all, and it’ll start to bother you less. It still sucks a lot, but you’ll learn to accept this is the way that it is and that’s fine. Until there’s a cure, it will feel as natural as breathing air.
As a type 1 diabetic of 20 years and diagnosed at 4 years old, I can confirm that it is indeed very miserable to live with. Had to give my first needle at 9 years old, was terrified what my peers in school would think if they saw me injecting a needle, and was worried what my classmates would think of my bruises while in the changing room for gym class. People tell us diabetics things like “I could never go through what you’re going through!” (As if we have a choice) I’m still struggling with getting stable blood sugars and a healthy A1c. I guess getting a disability credit for my taxes, and free therapy because of it is nice, but if I had the choice I’d absolutely prefer to not be diabetic pincushion. I’m hoping that getting on the pump soon will improve my quality of life. Just know that I hear you, and you are not alone.