I was diagnosed with Type I back in April of 1990. I was a freshman in high school at the time. Over the years, I’ve been on more types of insulin than I can count and at least four or five different insulin pumps. I also have insulin resistance, so I’m on metformin as well as insulin.
But lately, I’m just tired. Emotionally tired.
I’m tired of always fighting my blood sugar, of always fighting my insulin resistance. I’m tired of waking up in the middle of the night because my pump is alarming over something (highs, lows, sensor read issues, etc. etc.).
I’m tired. The day-to-day frustrations of diabetes have gotten to where some days I just sit there and fume whenever my insulin pump beeps at me for basically anything at all. And at least once or twice a month, diabetes and my fights with it will reduce me to tears. Because I’m just so sick of fighting this thing.
I’m emotionally worn out.
My Endocrinologist doesn’t really respond when I try to talk about how tired I am of this. I mean, that’s not his area of expertise and I get it. I’m scheduled to consult with a psychiatrist next month over possible ADHD, and I plan to bring this up with him as well, because I think it’s getting worse.
But am I the only one? I mean, I’ve read all kinds of great articles about diabetes management and living with diabetes, but I’ve never seen one that talks about how emotionally exhausting it is to fight against a chronic illness for almost 30 years.
If you’ve gone through phases like this, or are in such a phase now, how do you deal with it? What do you do to keep your spirits up and your stress down?
I’ve only been dealing with this for 18 months but at times I do feel like I don’t want to deal with this.
I’m sure things will change over time but I can appreciate how a person could get really burnt out. I only have the Dexcom (no pump) but some nights having multiple alarms wake me up is exhausting.
We should all do the best we can as much of the time as we can. If your feeling burnt out you should of course talk to people about it. (Friends/Family/Doctors). Hopefully this isn’t controversial but you could also relax how tightly you control your diabetes for a little while until your feeling better. Nothing crazy but maybe allow your self a little wider variance to reduce the constant monitoring/action required for management.
For me there are certain things I can do that make me feel less diabetic and for a short time I feel more normal. I go on really long bike rides. I like it because I get to drink gatorade and never need to carry insulin with me. I just have sugar tabets if I need them. If I go for a really really like ride like 25 miles I stop and buy a 20oz Coke as a reward plus on the way back I burn up the sugar.
I have the following with me for the ride
Dexcom
Phone
Gatoraid
Water
Glucose tablets
Money
Also I walk a lot, it pretty much always makes me feel better to walk and listen to podcast. It also makes my sugar control better.
I’ve never had a pump but I think for me having to carry “supplies” is part of what gets old. Maybe switching to MDI for a little while would be a nice change? Not having to have the pump and supplies with you might be a nice change of pace? I’ve never had a pump so I don’t know what its like to have one for good/bad. I do like that I can go to the store or do things with nothing but my Dexcom and access to sugar. If I’m planning to eat then I have to have insulin but a quick trip to home depot or something and I don’t normally bring it with me.
I too suffer from what I call “Diabetes Fatigue” and my Doctors really don’t want to listen or talk about the emotional side of the disease. What has helped surprisingly, is this forum. Just realizing that there are others out there with the same issues actually comforts me. I know that I am not alone and I have some one I can discuss my issues with. I believe it helps psychologically, I have been able to bring my numbers back down to below 7.0 and have kept it down for 4 months. I still hate taking all the meds, and monitoring carbs, and the insulin shots, and testing everyday, but I’d like to think this group of people have cared enough about me to give me good advice and the strength to carry on. I guess I’m just saying talk or type about it, some one will answer with some kind of life changing insight.
Enough rambling, just try to take care.
Shawn Kennedy
Your fatigue is understandable. Diabetes is relentless and it plays for keeps. It’s hard to keep your motivation fresh all day, every day.
My most successful strategy in dealing with the emotional/psychological burden of diabetes is to use tactics that deliver closer to normal blood sugar levels. I was diagnosed T1D in 1984. I didn’t really figure this out until 2012. Since then, my diabetes life has been better, not perfect but better.
Check out this recent video of William Polonsky, PhD.
Here’s a summary of Polonsky’s professional experience with this topic.
Dr. Polonsky is President and Founder of the Behavioral Diabetes Institute, the world’s first organization wholly dedicated to studying and addressing the unmet psychological needs of people with diabetes. He is also Associate Clinical Professor in Psychiatry at the University of California, San Diego.
I frequently experience diabetes fatigue or burnout but when that starts happening it’s usually because I am doing everything I possibly can and still not getting good control. When this happens I try something new to see if it will help my BG’s stabilize.
Right now I am taking Magnesium Malate 1,250mg per day and I have experienced a huge increase in my time in range with less insulin. I went from a 14 average BG of 164 and SD of 51 to a average BG of 132 and SD of 39 within a few days. This has understandably reduced my frustration significantly. Although I have been having more lows since my insulin sensitivity has gone up so much that I am having to frequently adjust my basal and meal boluses. However if I do get into the 200’s I seem to need just as much insulin to bring it down as before I started taking magnesium.
I’m OK with where my diabetes is at right now, but it might be worth considering other possible sources of fatigue (and possibly depression). Maybe not for you, but I’m in process of being diagnosed with some Central Nervous System disorder. Could be MS, could be Lupus, other weirder stuff, etc. Everything under consideration is not diabetes related and all are autoimmune.
But, here’s the thing: having Type 1 means many of us are also susceptible to other autoimmune disorders. Disorders affecting thyroid and the CNS often result in fatigue and depression as symptoms. I was raised as a “backwoods tough guy” and taught quite explicitly to never admit to fear, depression, or having feelings in general and to downplay things like physical and emotional stress or pain.
I’ve kind of run out of patience with that approach to life, though, and I’m talking to a doctor about antidepressants this week. I know that’s slightly off topic, but it might be useful to somebody. Just as with diabetes there is no shame in being on insulin (despite what many people might think), there is likewise no shame in taking antidepressants and other mood stabilizers.
I tend to follow this course to maintain my motivation. I like to try new things even if I’m not experiencing the worst. I think it makes me think I’m in control and I set the course. Of course that’s not completely true because so many things about T1 are outside our control, no matter what. But it keeps me motivated. I like to be first in line to try new products and I get proactive about addressing problems I’m experiencing without waiting for my doctor to suggest something (of course I clear anything I try with him first to make sure it’s safe). In fact I just called Tandem this morning to get samples of different infusion sets in hopes of improving my batting average on avoiding sites with poor absorption. I’m also experimenting with Afrezza for some of my mealtime doses in hopes I can Improve standard deviation around my average blood sugar.
It probably helps that I have a science background and doing experiments is ‘in my bones’, but it keeps me motivated even if what I try fails.
Thanks so much for pointing out diabetes fatigue. I have been a type 1 for 60 yrs but didn’t recognize that a part of the fatigue I am feeling now is being caused by the sometimes grueling work it takes to keep on top of this disease.
I am used to being in control of my diabetes partly because I have had it for so darn long and partly because I have become disciplined.
To me it just is what it is and I handle it. That is until it starts giving me grief and then it throws me for a loop and it seems like such a burden. I don’t think that I handle the emotional fatigue especially well, but I do get through it.
I think reading your post reminded me to not be so darn hard on myself. It reminded me that I am a warrior and to congratulate myself on making it this far. It reminded me that there are others who know exactly what I am going through and how hard I have to work to keep healthy. You reminded me that I am not alone.
Keep reminding yourself that you aren’t alone and that you will feel better.
Right now because of what I hope is an infection my glucose levels are going wild and instead of being very controlled I am seeing some really high and very low numbers within a matter of hours even though I am eating my normal diet. It is extremely frustrating and unnerving.
I just have to remind myself that this too shall pass and excellent control will come back. In the long run this will not hurt me. Eventually I will get a good night’s sleep without alerts going off.
I deal with my diabetes because I have too. I don’t have a choice. Usually I am quite happy that it isn’t anything worse. At 68 I have outlived some of my friends who ended up with more devastating diseases.
It sometimes takes someone with diabetes or someone who lives with a loved one who Is insulin dependent to really understand how much of ourselves we have to give to this disease every moment of our lives. It is a very, very difficult road that we are on and it isn’t fair. Life still can be very good though.
Give yourself a hug, forgive yourself for not being perfect and come here to vent or to just find someone who understands. I hope that you start feeling better soon and again thank you so much for your post.
Marilyn
Go to god. Pray. Talk to …I was going to say your doctor but it seems he did not help. I am on a very low dose of venlafaxine. Think I spelled wrong. Have been for a long time. My doctor prescribed it. So when I do get to feeling down. Praying and talking to friends, pastor helps. I have been diabetic for 49 years. So yes you will have ups and downs. I too still get tired of the beeps and buzzes, I just think this is not a disease, it is just a way of life and whatever I am feeling at the time will pass. Hope this helps.
Could also be procrastination @mohe0001, which is not meant to demean or sidetrack this thread. IMHO, anyone with a chronic disease rides an emotional rollercoaster of ups and downs, engagement and I could care less. It’s tough. It doesn’t end. It sucks. And it’s forever. Now what? Soldier on and thrive as best as possible.
Now, back to @mohe0001 's procrastination problem…
…
I have one week left, so there is a real limit on how much procrastination I can do now.
Just reading my email - one of our MN diabetics is running for congress. This is gonna be a full diabetes platform she’s running on. Geeze, she must have really had enough. Can you imagine how sick of diabetes she’s gonna be? Jesus Christ.
“Former Chapter Lead, Quinn Nystrom, has taken on an exciting campaign for Congress! She is a running candidate for Minnesota’s 8th congressional district.”
Someone mentioned that the diabetics were up in arms out there about a year ago. I didn’t realize.
@mohe0001 from one procrastinator to another, it sounds like you have approximately 156 hours of free time to procrastinate and stress over doing something other than the assignment. Me I would really push the envelope and go 160 hours and then try to crank it out out in under 6 hours. Nothing like a little pressure to motivate! (my usual modus operandi at least).
Hey CaM2, It’s ok to feel tired and worn out! Sounds like you are taking the right action by seeking out additional help! That’s smart but try not to beat yourself up over feeling tired of it all (if you are doing that at all).
My wife had an acute case of ketoacidosis 7 years ago. Coma for three days and because of the ketones suffered a brain injury from both brief anoxia and hypoxia (lack of oxygen in the blood). So I have to maintain her T1D for her because she is not able to (severe short term memory loss and some dementia). I’m tired also… really, really tired of managing two lives - one with T1D. Sometimes she disconnects her pump from her inset in the middle of the night and her sugar starts to climb. Mostly it is just the day after day grind of making sure she (we) eat right and do our best to manage it all.
I think in the end, all we can do is the best that we can! CaM2 - thanks for inspiring me to try and do the right thing even when things aren’t that great and I’m totally burnt out!
While I know the struggle of managing T1D in me, I am humbled by the struggle you describe. We sometimes affectionately call people like you, type 3 diabetics.
You are subject to much of the same grinding and demanding forces that those of us with diabetes must endure. Your loyalty, love and dedication impress me. Best of luck and please interact here as you need peer support, too!
You might, if you haven’t already, search for peer support groups of those families impacted by Alzheimer’s disease. Face to face groups as well as online forums might help you. You’re playing the long game like we are.
Not much else to add… I’ve been at this for almost as long as you (24 years next week), and one thing that helps is changing things up. Burnout seems worse when I’m doing worse, numbers-wise.
So, here are some things I’ve done:
switch from a pump to pens for a short period of time
do Whole30 (just for a month)
take a short break from CGM
try a new exercise routine
do intermittent fasting (my current plan, working great)
…etc! And, of course, finding other people to chat with who are in the same boat is pretty helpful, too
Hugs to all of you, and I think an extra hug to @Husband_Steve because he is having to live it 24/7 for someone else.
But I hope you all feel better and get past this and be happier and at peace with something none of us yet can change.
I haven’t had this problem and hope I never do. I have just had the daily can’t I just ignore that low alarm this one time? But then I realize, I probably really can’t. Why on earth do I have to eat something so I can exercise now? Can’t I leave the house without all this stuff? So I can see someone just being a mess and tired of it.
People need some help to get through things sometimes. I would try to talk to your doctor to see if they can recommend something, or sometimes the insurance companies have programs you can join and they can help. Especially important if your doctor won’t listen.
@CaM2, there are psychologists who specialize in diabetes. I mean, you might not need someone like that. Just wanted you to know that they exist. I think, in part, because of all the diabetes nerve pain clinics that have popped up. I think they have to exist to evaluate for drug seeking behavior.
Wow! That is a great video and well worth watching to the end.
Thanks for sharing that, @Terry4. My immediate thought is each of these conferences should develop a way to give scholarships to those who are suffering from fatigue/burnout.
It is only to be expected to feel fatigue over the intensity of T1 management. How long it takes a person to get to that point might vary but we all get there. It takes an enormous amount of motivation to keep going with the disease day in and day out, over years and years. Doctors cannot dispense motivation so the topic may frustrate them. My personal burnouts have been very much related to noisy technology. I do better without alerts repeating themselves like some digital super nag. But above all, I can only manage if my life provides more joy than my T1 provides pain and sometimes it does. If my life ran out of joy I would be in trouble.
