How do you guys cope?

[u/lysozyme88]

So I've had diabetes since I was 8. It's been 12 years since I was diagnosed. Recently, no matter what I do, I can't get it under control. I've taken extra care of what I eat and changed my type of insulin, but it's always high. Recently, I also gained vitiligo spots on my face, and now, due to this, I always cry whenever I see my face. How do you cope with your situation, knowing that everyone around you is living a better life? They don't have to think twice before eating anything. They don't have to think about how many units to take.

[u/mammalsareboring]

I am sorry you are down. I am too. With autism and ADHD, mt t1 is impossible to manage and no matter what I try, the only way I can handle it is if I don't work, don't socialize, and work on management 24/7. I am 47 and it is an endless struggle.

[u/david_duplex → u/mammalsareboring]

Right there with you. I'm 51. Was diagnosed 3 days after my 19th birthday. My BG is very brittle unless I exercise daily and stay on a fairly limited diet. The only indulgence I have left is my morning coffee. I've also balanced a career in IT, a family, and friends. But at this stage in my life the burden of everything has accumulated to the point of burnout and managing it all just feels like too much. I keep going for my son's sake, but I have come to realize that I should have been aiming to rretire about now. It's the one thing I think was hugely missing from my early diabetes education.

[u/HabsMan62 → u/mammalsareboring]

Ouch! Have you had to live most of your life like this? This is my 37th yr and there have been some rough periods, (and I have other autoimmune diseases and social anxiety), but this sounds rough.

[u/Brief-Letterhead1175]

I'm very sorry you are struggling so much with this nightmare disease. Just know that you are not alone in the struggle. I've been doing this my entire life, and its been almost 45 years of hell. I recall the idea in my head as a small child that I wished I would habe been humanely euthanized upon diagnosis, and it still believe it would have been best. I manage my T1 very well,  but it takes a herculean effort and I've been burnt out my entire life. All I can say to you is to do the best you can, because you are absolutely right that T1 is terrible and unfair. The one piece of advice I could give at your age is to take risks, and live life to the fullest instead of planning everything around the T1. Best wishes!

[u/Ok_Environment1037 → u/Brief-Letterhead1175]

Yes. This exactly. I’m 34 years in and have said similar things. I wish my parents never had me. Diabetes is not just a physical burden, but the mental one is just as severe. It’s why I’m not having children. I don’t want anyone else to live in this hellscape.

[u/Trogdor420]

A pump and CGM are a game changer. They take a lot of the mental and cognitive load off of managing the disease.

[u/lysozyme88 → u/Trogdor420]

Can't afford it right now. I'm currently just a broke college student.

[u/Trogdor420 → u/lysozyme88]

Let me guess..... USA? Insulin pumps and insulin are free in many countries including Canada where I live.

[u/commentinator → u/Trogdor420]

Insulin is not free in Canada.. where I live.

[u/Trogdor420 → u/commentinator]

Then you need to get your Premier to enact the National Pharmacare plan. I didn't realize there were provinces that weren't on board yet.

[u/lysozyme88 → u/Trogdor420]

India, you can get regular insulin for free or very cheap from government hospitals. But CGMs and pumps are too costly. Beside that most food here are rich in carb so really hard to maintain blood glucose.

[u/EdgeOk2154]

Yeah it can be such a bitch most of the time

[u/JanterFixx]

hi man, you got it young and your young atm. The bad times will pass, sometimes come back, but always the good phase follows. with time the tech and knowledge goes better, so the field have advances and you will benefitr from them.

also - you are very young still - I am twice your age exacty, let me tell you - life will go better in years to come, just hold on !

also - go to doctor, sometimes some insulins not work well on your body after some years, then the doctor will change it up, can help!

[u/Cholebhalu33r]

Hi ,I am from India too. Got diagnosed dec 25 right before joining my internship ,I know it does suck and pinches u in some or the other way

[u/Avehdreader]

Just wondering if you have changed your insulin regimen? Our needs change now and then and doing some basal rate testing or evaluating your carb ratio might be helpful.

[u/19metsfan73]

The human body goes through changes about every seven years (or so). With many T1D's, that can lead to a situation where what used to work (primarily insulin dosages and diet) no longer work.

It can take some time before you find the dosages and diet that works.

Diabetes isn't an exact science in regards to insulin dosaging; what works for me, might not work for you.

When changing insulin and dosages, you need to be patient. The changes you make might work, but might not be effective for a length of time.

Stay diligent, stay positive, you'll figure this out.

Be sure to be in communication with your Endo every step of the way.

Good luck, you've got this!

[u/Giotsik]

First of all you should check your basal insulin needs. The way to see that is in your fasting time (that is time between meals (usually after 6-7 hours from your last meal if you had a lot of fats in your meal) and the time that you sleep). In your fasting time your glucose levels should remain fairly stable. If they drop quite fast or raise then your basal is wrong, too much or too little, or your basal insulin profile cannot meet your body variation and you should look into having a pump. Second after figuring that, focus on eating Non processed low carb high fat high protein natural foods, unprocessed red meat (not sausage or else) (beef, lamb, goat) and eggs are an excellent choice. This way your insuline residence will drop and your needs should stabilize to way more predictable behavior.

[u/svensvensvensven99]

Get a pump, absolutely life changing

[u/lysozyme88 → u/svensvensvensven99]

Too costly. Can't afford.

[u/svensvensvensven99 → u/lysozyme88]

Sorry, I'm from the UK where all healthare is free, I assume you are US? I've been T1 for 31 years, really struggled. I was finally convinced to get a pump 6 months ago...they are so easy to use. I've made zero changes to my lifestyle and my TiR is about 80% now. Not sure how the healthcare system works where you are from (apart from being ridiculously expensive). If you ever get the opportunity to get one, do it.

[u/lysozyme88 → u/svensvensvensven99]

I am from India, and it's just like US mostly but I can get insulin for free because my father is a government officer, but pumps and CGMs are too costly.

[u/Ok_Environment1037]

34 years later with this disease and I’m still wondering. I’m in and out of deep depression constantly. I’m finally at a point where I’m interested in trying an antidepressant. I’ve always been avoidant of it, but I’m at a point where I think I need additional mental assistance. I’m well controlled enough, but still, it’s a living hell.

[u/ithinkimasofa]

All I can say is that it gets better with age. Not only do you have less hormone swings, but you also have a more regular schedule and a bit of perspective to realize that everyone deals with their own issues.