Imagine not knowing what exactly the chronic illness is. Lack of sleep will do a number on your system, emotions and everything.
U know what it is so familiarize yourself with some current helpful information about your condition and ways to cope. U need someone and something that is in sync with the condition. I tried a registered Dietician and it was such an added stress because they completely lacked compassion or understanding of my condition. So basically someone along the way misinformed me of the referral.
Be careful of the type of doctor u see therapist , counselor. I don’t think psychiatrist is the correct person for someone with chronic illness. That’s what u need is another medication that might interact with your condition.its also about perspective u might need a support group or activity with people who have something similar.
I have had a lot experience with chronic illness and trying to get the correct help is awful. If they even attempt to blame me or add another Med I’m out the door. The doctors don’t usually help manage prescription they mostly prescribe. Most have never experienced heath problems or the medication they prescribe.
If u have to go, make it clear U have a difficult to manage chronic condition and need help with ( sleep or whatever is frustrating u ) to the point of want to smash things. It hurts and it doesn’t help if professional people are not doing their job.
The only way to stop the fatigue is stop rollercoaster bloodsugars. The best way to do that is to limit both the volume and frequency of fast acting insulin. I stopped the roller coaster by only ever needing 1/4 of a unit to 1 unit of fast acting (fiasp) for corrections. I only take Humulin R for meals and at most 2 units for pretty set meals. My BG sits between 4.5mmol to 5.5 mmol most of the time. This way of dealing with my diabetes is fast fixing my physical and mental state.
You are the first person to sound like I’ve felt for so long! I appreciate hearing what you feel. I’mType 1 for 40 years. Just started using a pump this past spring and it isn’t the “fix all” I hoped. I keep having up and downs like before Have a CGM that helps but Im just tired too. You made my day! Thanks for being so real, so honest. I’m not the only one feeling the struggle.
Good day CaM2, was reading your post and I must say you depicted my exact experience at various times in my life with this disease for 33 yrs. I got involved with counseling younger people who were recently diagnosed with the disease which helped me get thru it. Seeing the smiles on their young faces made the struggle worth it but that was many years ago.
Managing this disease, coupled with the normal and abnormal life issues that people who don’t have this disease deal with can be unbearable at times. Here is my 2 cents:
- Find an outlet were people who are less fortunate than you give them a hand as it can be rewarding emotionally.
- Try to keep in mind that in the aforementioned suggestion (1) there are so many people who have conditions that are much more severe than ours that are fighting very hard to be here so let that inspire you.
- To have Type 1 for as long as you have and still be a contributor to our society means you are strong and you may not recognize it until someone tells your. Thank you for asking an important question.
Yes, I sometimes let my diabetes get to me. It can rule you if you let it. I usually make an appointment with my diabetes educator and she steers me on the right path. Good luck!
Hey CaM2, OMG I understand this SO FRIGGIN MUCH. I was diagnosed in 1991 as a 12-year-old 6th grader (as if middle school weren’t hard enough!) and I’ve been on a pump since 1997. I don’t even remember what it’s like to NOT have diabetes. Diabetes is emotionally exhausting, plain and simple, and I feel like i’ve fought it for most of the past 28 years. I hit the diabetes burnout/fatigue wall HARD about this time last year when I was (1) buried under a ton of high-stakes work projects and stressed/not sleeping well, (2) trying my damnedest to get used to a new 670G and Automode (before Medtronic released the updated, less-buggy Guardian 3 transmitters) AND a new endo, and (3) struggling with the fact that we decided not to have kids because I didn’t want to deal with MORE DOCTORS to help with some mild/possible infertility because I was already tired from all the doctors/bills/etc from diabetes. Heavy $hit.
I do have a mild-to-moderate anxiety/depression disorder that gets worse this time of year as the seasons change. I take sertraline (zoloft) for it. But it really really reared its ugly head about a year ago. I found myself swearing every time my pump would alarm, feeling guilty when it would alarm in bed and wake my husband up, feeling guilty when I had to delay getting dinner on the table because I had to check my BG before eating, feeling angry every time my sugar was out of range (which was like 80% of the time), hating Automode with a rageful passion, all the bad feelings. Finally when I realized I was crying at the drop of a hat and walking around with the sense of screaming inside, and “I don’t want to do this anymore” like a drumbeat loop in my head, I took a little time to try to figure out what I didn’t want to do. Of all the words/phrases I subbed in for “this” (be married, do my job, live in this house, etc.) the only one that felt right was “I don’t want to live like this (with diabetes) anymore.” It felt accurate and scary. I was so burned out from diabetes that I didn’t care about managing it anymore… and half-assed managing meant worse control, which meant more burnout, which meant I cared even less about managing diabetes even as I felt worse and worse in my body and in my mind. And so it spiraled. I’m not sure if I was actually suicidal or not – I didn’t have serious ideations, but I was 1000% sure that I did not want to continue my current relationship with my diabetes. Something had to change or Bad Things were going to happen.
First step, I went to my primary care doc and told him what was going on. I have a good trusting relationship with him and felt like I could open up. He upped my zoloft immediately and referred me to a psychologist. I saw her a week later. Thankfully, we really clicked and she’s been helping me for the past year with the emotional side of diabetes management. (Note that she doesn’t have background in diabetes… although, side note, her cat was diagnosed with diabetes this spring and she has told me in some sessions that she can sort-of-relate to how hard it is to manage diabetes b/c she has to test her cat’s BG and give insulin…) She has a close in-house relationship with my PCP and my diabetes doc, so they’re all able to compare/see my patient notes and work together. It’s been life changing. We set the long-term goal of “by the time I turn 40, I want to feel better about my diabetes, whatever ‘feel better’ ends up meaning.” I’m happy to say that I’m turning 40 on Nov 9 and I think I’ve made progress towards this goal. Here’s a few highlights of my personal journey over the past year:
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Cognitive behavior therapy has helped me think about my thinking, and how my thoughts manifest as behaviors. Example: when I have a trigger moment (a pump alarm, a high sugar, some sensor bull$hit) I now have the ability to “push pause” before having an automatic negative emotional reaction and work through it, like: “Am i going to choose to get pissed about this? If yes, that’s okay! but how will I behave if I’m pissed, and for how long? Is there a more constructive behavior I can do with my anger?” (I know that might sound a little woo-woo but it has worked for me.)
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My new mantra when I have a trigger moment is “Is this happening because I did something wrong?” Most of the time the answer is “no” – with so many things diabetes, sometimes $hit just happens. Being able to recognize that “this is not happening BECAUSE I did something wrong” has helped me not beat myself up so much. As in, “Automode is not alarming at 2am because I did something wrong. This sucks but it’s not my fault. I can choose how to deal with this situation. I’m in control of my reaction.” And if the high sugar/alarm/whatever did happen because of something I did, now I can reflect back and think “what steps can I take to try to avoid this in the future?” As in, “Yes, Automode went off at 2am because it needs another calibration and I forgot to calibrate before bedtime. Next time, I will calibrate before bedtime.” My other mantra is “progress not perfection.” Am I doing better than I did yesterday? Am I handling this situation better than I did the last time it arose?
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I started reframing my health goals in terms of total wellness – not just diabetes numbers. I got a FitBit and started a journal to track different stats every day and also weekly: things like # of steps per day, weekly weight, weekly average BG and SG, how much sleep I was getting, did I go for a walk, how did my mood rate on a given day, what was the healthiest thing I did today (e.g. go for a walk, get my flu shot, say no to ice cream), what’s one accomplishment for today (e.g. deep-cleaned the litter box, renewed my drivers license, called Medtronic customer service and didn’t swear at them). Diabetes didn’t actually play into that that much! It was refreshing to reframe diabetes as a component of my overall wellness, but not the defining element. Logging those stats (mostly-)daily and reflecting on them weekly helped me set micro-goals every week and every month, which gave me a sense of control. Oftentimes, those micro-goals weren’t related directly to diabetes, but rather to some other aspect of health/wellness.
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After 7 months I broke up with my endo – he was obsessed with how much time I was spending in Automode and I was hating him for it, dreading my appointments, feeling inadequate because I couldn’t make AM work for me. I went over to someone else in the same practice who is a CDE and pharmacist, not an endo, but she gave me the green light to reject Automode and just use the sensor/pump in manual mode. Getting back that sense of control really helped my emotional state and has also led to better numbers.
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I already had a copy of “Diabetes Burnout” by Dr. William Polonsky (copyright 1999, American Diabetes Association) and I read through that again. A few good tips/points in there for sure. I also bought a copy of “Bright Spots & Landmines” by Adam Brown (copyright 2017 by the diaTribe Foundation, currently about $6.50 on Amazon) and THAT IS A GOOD BOOK. Very easy to read, written by a T1 who gets it.
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I decided not to think about my diabetes as something to “fight” or “battle” anymore. Now it’s something that I “live with” or “work around.” (Less like a wartime enemy and more like a smelly roommate who always leaves dirty dishes in the sink.) Just changing my mental dialogue about it being a “fight” actually helped; you can’t fight something for 28 years without being emotionally drained – especially if it’s something you can’t “win” against! (What would “winning” even look like? It’s not as if after 28 years of fighting, diabetes is finally going to run up the white flag and go home and give me back my beta cells.) I found some magnets in a drawer that I’d purchased from the American Diabetes Association some years back that said “I decide to fight diabetes every day.” I threw them away as part of my decision not to “fight” diabetes anymore. (And then I documented that action as my “Healthiest thing I did today” in my health journal, LOL.)
It’s been a heckuva year and not easy – and it’s taken a lot longer than I thought it would. The work that I’ve done in my own head has been tiring, and sort of scary at times, but really freeing at other times. I feel incredibly lucky that my psych, PCP, and new diabetes doc are in close communication and have been able to coordinate my care, and that I feel I can trust all 3 of them. I know I still have a ways to go before the mind shift I’ve achieved will really feel “locked in” – it feels kind of fragile now, especially as we move into the cold/dark part of the year. But I think I’ve got this.
And CaM2 I think you’ve got this too. But if this burnout feeling has been ongoing, or creeping up on you for a while, I’d encourage you definitely bring this up with the psychologist you’re scheduled with next month. If you click with him, please please ask him for some help on this – the burnout you have is related to diabetes, yes, but like my therapist he doesn’t have to have expertise in diabetes to help you overcome feelings of burnout and helplessness. (A lot of people have those feelings for a lot of different reasons.) If you don’t click, perhaps seek another therapist who has experience with patients with chronic conditions (diabetes or not). Whether in-person or via a virtual/teletherapy option, even just a couple of sessions might help a lot right now.
hugs and keep us posted please,
Amanda
A lot of my angst comes back to “I didn’t do anything wrong! Why is this pump alarming at me again!” or “I can’t help that my body doesn’t just refuse to make insulin, but also is resistant to it, too!”
Insulin resistance + not making insulin at all. My pancreas is a teenager: it won’t do any chores and refuses to listen. 
Sigh.
Changing my mindset to “it’s just a machine; it’s not my fault it can’t handle reality. It’s fussing at the data, NOT at ME,” is a goal.
Changing your mind set. Sounds so easy doesn’t it?! If only you could turn a switch and make things better or easier or fun!
I have been very fortunate to work with the people at Behavioral Diabetes Institute where Dr Polonsky and Dr Guzman work. And after 49 years I am ok with where I’m at. They were pivotal in me getting to being ok with a healthy good enough. I no longer beat myself up if my numbers are out of wack. I just fix it and move on. No more “should have’s”. No more “why did I do that”. Just fix it, learn from it if I can and move on.
I spent much of my 20’s in a state of depression and was so hard on my lack of diabetes management. I was always working it but not getting anywhere. And the shame and guilt I threw at myself was intense. I would never have been that hard on someone else but on myself, no problem.
I don’t have it all figured out. I don’t run numbers like many here do, but am I healthy? You bet. Are my numbers in a safe place? Sure are. Am I beating myself up every time I out of range? Nope! I have better things to do with my day and my life.
So I think just picking one or two things that are driving you nuts and focus on those things. Is it alarms? See if you have everything set for the best ranges you want or need. See if you can ease up on them for awhile. Or many just take a break. I know when I changed my snooze rates on my Dexcom, things got much better. Alarm fatigue can be huge.
Maybe just taking a walk around the block when you get to that breaking point. Exercise, just a little bet can be a big help with stress. And diabetes is stress!
Please, don’t think you are all alone in this. Many of us have been there, are there or will at some point be there. Just take a deep breath and find that one thing that will give you the biggest bang for your work.
Mind a few years ago was post meal spikes and the fact I couldn’t drop some weight. Made one change, gave it some time and those problems are no longer my biggest frustrations.
You’ve got this!
I think it’s past time for endocrinologists to be more involved in our burn out periods. How many psychiatrists really know squat about diabetes (1 or 2)? Psychiatrists will respond to whatever psychological things we tell them, but then tying it to this disease doesn’t happen. This infuriates me to no end. Psychiatrists are MD’s/DO’s and should, imo, see the whole of our lives. The practice of medicine has needed an overhaul for a long time. Anyway, really appreciate your bringing this up, since I”m on a nightmare roll recently…not just burn out, but the unresponsiveness of our so called health”care” system. Am worn out on those who are so into tech, the human using it is secondary. The human is why the tech was created in the first place. The reason there is a Tudiabetes is that the health”care” system fails each of us at some point. Again, thanks.
I am Type 1 diabetic since 1971 when I was 8 years old. Over the past 8 years or so I’ve eaten low carb and avoid all high glycemic carbs too. That means very, very limited potatoes, potato chips and any other high glycemic carbs. I am on really low insulin, Humalog varies depending on what I eat but typically it’s about 15 units or so per day. Also take 5 units of Tresiba every morning at 7 am. I find a natural rise in my blood sugar every morning until about 11 am but I do take 3 units of Humalog to combat that, sometime around 9:30 or 10 am.
I too am absolutely exhausted by all this relentless, challenging blood sugar management. It can be tolerated out of necessity but I am entirely wiped out by this. Only option is to stop caring so much and be less vigilant. Which I feel more and more all the time. Don’t think there’s an answer yet but there is hope in all the great work that’s currently being done. I use One Drop for my blood testing strips and because I live in Canada, my insulin’s are not too expensive. Would love a vacation from that, that is for sure. I hear you loud and clear on the diabetic fatigue…
An interesting thought and experience I had a few weeks ago. Still in the getting diagnosed stage for whatever CNS thing is going on with me (likely MS), but on my second meeting with my Neurologist, he said to me (and my wife who was with me):
“Let me be clear, nothing you did or did not do is responsible for these symptoms or the underlying disorder.”
I (and my wife) found that very useful in terms of dealing with the emotional side of whatever is going on. It’s out of my control, so all I can do is take it as it is and work on the treatment.
I really wish that I had the same experience with diabetes, where the first thing I heard from my doctor at the time was, literally, “well, you did this to yourself.” Even though that wasn’t true then (even if I had actually been Type 2), and it isn’t true now, it still sticks around and makes the fatigue and depression all the harder to deal with.
I feel it on a daily, weekly, monthly, yearly basis.
For example, I just tore a fresh set off trying to take my sweatshirt off. Of course they will replace the set but it’s like, MAN i just did this. I have to go home, take this off, prep a new set, and insert. COOOOLLLL.
I was diagnosed in '93 and have been through all the same kind of stuff as the technologies changed.
I just try to deal with problems or the constant routines as they come, and try to leave the existential stuff out of it. My goal is simple, PUSH ON.
I have been Tpe 1 since 2000, I was 10 when I was diagnosed.
I try really hard on a regular basis to not feel sorry for myself, I am healthy, I have great doctors, yada yada yada but the thing that gives me the most fatigue is when I am tired from Diabetes or have had a rough week with my sugars and I have the moment of realization of - this is forever. There is never a break.
I can be the most healthy, see the best doctors, get the best treatment and yet, it can all be messed up and I need to start all over again and this will happen so many more times.
Too me that is the hardest thing, no matter what I do, how hard I try this is forever, and that is exhausting.
Hi @ZoeT, Welcome to the community, we all feel as you do sometimes, in this community everyone understands.
Welcome to TUD @ZoeT, it’s a great community–hope you stick around!
I call it “diabetic claustrophobia” which I think gets at the walls-closing-in feeling of it better than just “fatigue.” I was dx’d in 1983, and the “this is permanent” feeling oppressed me for weeks. It still comes back periodically, especially when something just isn’t working anymore. When your regimen is working right it becomes routine enough to give you the luxury of not having to think about it most of the time, and then something just stops working and suddenly you have to focus on it, stress about it, try to test this and that to try to figure it out, and emotionally it feels like getting dx’d all over again. For me, inexplicable and infuriating failures with my pump gear can put me into diabetic claustrophobia. I’m STUCK with this crap, and it Just. Isn’t. Working. Right. and it feels like that’s going to go on and on forever.
One small comfort is that no one can do this perfectly. There ISN’T a “correct” answer all the time. It’s like being a tightrope walker, only you didn’t ask for the job, weren’t trained for it and unlike a real one you have to be up there all the time. So we fall off, and we get back up again because there’s no other choice, but you don’t need to feel any shame about it because NO ONE can help falling off every once in awhile if they have to be up there every minute of the day and night, 7x24x365.
While I know that diabetes is forever, one thing I have learned is that I can overcome whatever it can throw at me, if I don’t give up and continue to observe, experiment, and implement various tactics. For me, winning re-energizes my spirit for the long run.
I define winning in terms of diabetes statistics that I monitor every day. I know, however, that winning requires some discipline with eating an appropriate nutrient dense diet, getting some exercise every day, and paying attention to good sleep hygiene. There’s no better boost to my sense of well-being than waking up after a great night’s rest.
We all fall down no matter our devotion to our healthy diabetes routines. Life happens and we must remain steadfast and confident that we will stay the course and regain better health and outlook. This resilience is a key attribute to living well with diabetes over the long-term. I’ve been at this for 37 years, it can be done and you are up to the task!
Success is not attainment of perfection, simply a continuous effort to reach for better.
Funny thing is, the sense of success with diabetes will not be bestowed on you by your doctor, parents, spouse, or friend. Only you can grant that to yourself. Good luck and welcome to TuD, @ZoeT.
You still burned out, @CaM2? Haven’t seen you around much. I’m going on a, like a 6-month run of burnout. God only knows what my a1c is. No one seems to care during covid - especially not me.
I’m sorry to hear that @mohee0001 Smile and give yourself a pat on the back for still being here, for surviving and just getting through it sometimes.
Equipment failure just irritates me, like it’s messing with my TIR lol…the forever thing so far is just an irritation too as it is aggravating sometimes I have to compensate for being a type 1 when I want to do certain things like snorkeling. So far, I can’t say that can’t ever change. I can handle the days of why am I needing more insulin all of a sudden for a day or more, or I keep wanting to drop all night and I just turn off my CGM because I don’t want to hear it anymore. (I wake up when I am actually “too low” anyways)
But the thing that gets to me the most sometimes is when I have planned something perfectly, the exact right dose the exact right timing and for no apparent reason something goes wrong and screws with my perfect plan. For some reason that is the thing that ends up bothering me the most. I think it’s because it reminds me I can’t have complete control over this all the time no matter what I do exactly right.
I think it’s okay we all feel sorry for ourselves once in a while as long as we can pick ourselves up, dust ourselves off, and get on with it.
@mohe0001 with everything going on in your neighborhood plus Covid, I would probably feel the same.
Personally I found that if I just focus on today, and not worry about tomorrow - just today - things somehow come together. Today may actually be a s***show, but if I do what I can to mitigate or just appreciate the positive parts of the day, tomorrow will take care of itself. Some days I struggle to find the positive, but I still try to make everyday the “best day ever”. I get that it sounds corny, but I need to trick myself each and every day so I try. Trying counts. Trying adds up and matters in the big picture. Trying every day and only focusing on that individual day no matter the outcome is the only way I personally have ever gotten out of the funk, the malaise, the grind, the marathon that we are all involved in with our personal diabetes voyage.
Good input, El_Ver.
I was poised to burnout well before covid, just from all the Loop experimentation and hardware/paradigm shifting, doing a lot of writing and communicating about diabetes, and lobbying. I went on a 2-year diabetes crusade. It was unsustainable. I was super diabetes enthusiastic. Now, I am bored of/sick of diabetes.
My dad is doing well and might be released from the hospital today. (@cardamom). Turns out it was a tick bite on his leg that got infected and the infection grew until (I think) he was going septic.
Why tele-medicine sucks:
If you looked at him, it was obviously an infection. His leg was swollen to 1.5 times the normal size. There was red streaking indicating infection. But, he barley even mentioned this fact because he was so sick - nausea was his primary complaint. He called his leg swelling, “mild inflammation,” to the nurse over the phone.
The nausea triggered covid fear in the medical staff and it was very difficult to get anyone to provide care. They all wanted him isolated. Because he isolated, no one put eyes on him.
Finally, I spent 1 1/2 hours on the phone trying to speak with a nurse, told them he couldn’t walk, hadn’t eaten in 4 days, and that I suspected he was going septic. She suspected a blood clot, but convinced him to do to the ER.
If you or someone you know needs care, be prepared to fight for it.