HELP! I have had type 1 diabetes for 4 years now. I am still constantly consumed mentally with what my diabetes is doing every minute of every day. I live in constant fear of highs and lows and it controls my entire life.
Does anyone else struggle with this?
Any advice or tips?
Thanks in advance
-mentally exhausted diabetic
Hi Lil Mama -
Your situation sounds very painful. Have you thought about working with a therapist who might be able to help you with reframing your thoughts about diabetes? Meditation or mindfulness work might also help.
Good luck,
Maurie
I agree with the above comment, have you tried talking to a therapist or similar? I sometimes have fears around diabetes (and other health issues), but they're limited to specific situations and are not an ever-present feeling every moment of every day. That does not sound like a fun way to live...I hope you are able to find ways to reframe things.
Hi Lil MaMa; good to see you again. I very much agree with Maurie and Jen; you shouldn't be suffering like that, and a therapist can help you work through it. A lot of people hesitate to see a therapist, thinking it means they are "crazy", but therapy is meant to help you live your life in a positive and peaceful manner, even with D - you deserve to be happy and, if not free of stress (who is?) not struggling like you are right now.
I spent twenty-five years being frightened of diabetes, especially severe lows. It only proved to make me depressed and ruined my health. I suggest a therapist like the others suggested. Also, it might help to educate yourself (if you haven't already) on diabetes and how to manage it well. Being diabetic doesn't condemn you to a future of all those horrible complications. If you take good care of yourself you'll be just fine. You might try reading Dr. Bernstein's book "Diabetes Solutions", it has helped so many diabetics live so much healthier.
All the best to you. :)
A certain amount of fear is healthy, but if you walk around all day in constant fear your life can become a nightmare. Maybe it is time to just face up to some of these fears so that you can put them into their proper place in your life. Exactly what has happened to you when you have been high or low. Sometimes our fear of the unknown is far worse than the fear for the known. Have you had a bad hypo?
As Tamra suggests, if there is something specific like having had several severe lows, a therapist who does something like exposure therapy might be able to help you deal it.I understand the constant nature of diabetes but I try to think of myself as beating it up with success. Each test can be successful,even if the number's off, I can do a good job figuring out why, so it goes better the next time, and do a great job fixing it to clean up the mess. Perhaps it's delusional to think of it that way but it seems to work ok for me.
I have been a type 1 for three years now and Insulin dependent for about to a year and a half. Life changing to say the least. During my period of adjustment to using insulin, I have had my moments of few of lows. I work really hard at not letting it take my life from me. I found that support from others is very helpful. Also, always being prepared with glucose tabs at all times helps me. It is really manageable and not so scary if you understand how to control it. Hang in there and just take one small step at a time.
For me, it has been nearly 3 years since diagnosis and I have dealt with depression, anxiety, panic attacks, etc. However, I find that the more that I step out of my comfort zone and realize that I can deal with certain situations, etc. the less I feel like diabetes has control over what I can/can't do. Another thing to keep in mind is that the medication and body adjustments can impact your emotional state. I had never had panic attacks prior to being diagnosed, but started having them a couple of months in and they came and went afterwards. I think part of this was due to the chemical changes in my body and the adjustments to getting back to "normal". Remember, insulin is a hormone and can definitely have an effect on mood, etc. I would also point out that about 5 months ago, I went through burnout and quit being as obsessive about every BG number, trying to calculate my carb intake to the gram, etc. I tried to be a bit more relaxed about it (I was obsessive about logging, tracking, etc.). At my most recent endo appointment he asked how I thought I was doing. I said I expected my A1C to be slightly higher than last time and explained why. He said I was being too hard on myself and told me my A1C had gone down by .4 points. Anyway, I agree with the counseling but would also recommend trying to find someone else with T1 that you can talk to directly and share experiences with.
Is your fear driven by actual events in your life, like a series of severe lows and maybe even transport to the emergency room? Or perhaps your fear is based more on a vague sense that all is not right with you.
Do you think addressing the particulars of your diabetes treatment, such as carb counting and insulin dosing, will help reduce your fear? If not, then maybe talk therapy that recognizes your fear and then develops some real world tactics to minimize it would serve you best.
Your post reminds me of the classic male/female intimate relationship interchange where the female expresses an emotion, like fear, to her male partner and her partner counters with all kinds of concrete physical solutions to help his mate. She then gets frustrated that her partner is just not "hearing her" because she doesn't want concrete solutions for a physical problem, rather she just wants her partner to validate her emotional experience and be with her in the moment. She wants her partner to understand the depth and breadth of her emotion and that experience can help her move on with her life, the fear neutralized.
Which fear do you have? One with a concrete physical world trigger or one that lives more in realm of emotions without a discernible trigger? Perhaps the source of your fear is somewhere in the spectrum between those two extremes.
My emotional posture towards diabetes these days is more in the AR mode of kicking ■■■ and taking names. I pay a lot of attention to my blood sugar levels but more often than not, I like what I see. Over the last two and one half years I developed some effective tools for keeping my blood glucose in a reasonable range. I feel in control! That feeling of efficacy gives me good emotions about my diabetes.
It'd be easy for me to say, fix your blood sugar levels and good emotions will follow. That may or may not be true in your case. Your sense of fear may need to be reframed so that you can keep it in a healthier perspective. For that, talk therapy is a good antidote.
Diabetes is more complicated than most people give it credit, the emotional side is more than half the battle! Good luck and hang on to your hope.
By the way, volatile and highly variable blood glucose levels that range from very high to very low can amplify negative emotions. Blood glucose variability in itself physically drives unhealthy emotions. This is often lost as we busy ourselves with methods to treat highs and lows.
I'm reading more and more references in the medical literature that recognizes the bad health effects of blood glucose variability.
Our bodies' metabolic response to low blood sugar is to release adrenaline. Adrenaline puts us in the classic "fight or flight" tension. In prehistoric times, this adrenaline physically prepared us to fight an enemy or run away. This is an exhaustive metabolic event, one which burdens people with diabetes much more than the average person.
LiL MaMa, I agree with the idea of seeing a therapist. I have been advocate of adding therapy to the standard diabetic care protocol. Even though I had been diabetic for over 25 years, I really did not the issue until I went into therapy and dealt with it.
Often times people associate therapy in a negative fashion, it is not. I am so happy I sought help and made me a better diabetic. I celebrated my 40th year living with diabetes this past June. I am still in a therapy, this time in a group setting where I am providing hep to people who are facing one or more chronic illnesses. I hope you will consider it.
As for your question? I do not fear my diabetes. I fear it might restrict me from having a meaningful life. For me if I am not making a difference I am not happy. this fear was destroying me and i needed help. I did find it and yes do have and do take a medication for depression. Will i ever be "depression free" likely I will not. But I am no longer paralyzed by my disease to the point where I refused to even test my blood sugar. Today I test often, I go to doctor appointments and I way more healthier.
You've got some very good advice here. I second all of it.
One more thing -- you might want to get a copy of the following book:
William H. Polonsky, Diabetes Burnout -- What to Do When You Can't Take It Anymore (Alexandria: American Diabetes Association, 1999)
Bill Polonsky is one of the foremost pioneers in dealing with the psychological (not physical) aspects of managing diabetes. Chapter 10 is specifically about fear and stopping it from controlling you.
Yes...me too, unfortunately. For me, it just comes from not really understanding 'the beast' and/or that it's ever-changing all the time. I go from 40's to 300's now. I think the 'fear' comes from not really knowing from day to day what's going to happen. I am also Type A personality, perfectionist - a detail freak, wanting to control this (as my endo keeps telling me) and I (we) can only truly just manage it. Maybe that's a bit of what you experience, too? Therapy may help. I'm doing it because I've had some terrible nasty lows lately and some bad (high ketones) highs too. Good luck!
I whole heartedly agree with so much of what has been said already. As a counsellor myself, I am obviously an advocate of psych services, but I was a counselling client long before I sat in the other chair (so to speak, lol).
I believe that life need not be constrained completely by diabetes and yet, for me, I also recognize that I have challenges that sometimes take their toll on my own functioning. Personally I need to really take time for self-care and acknowledgment that sometimes this is really hard. Others have different philosophies, but I've found it helpful to acknowledge my struggles and work with my strengths to overcome what I can. Sounds wishy washy but it works for me.
This community is such a great place to feel less lonely and isolated. There are so many positive and supportive voices here to boost you up when you need that push. Hang in there.
It really is a shame, even a tragedy, that the idea of counseling still carries such a powerful stigma in many peoples' minds. Emotional problems are just as "real" as physical ones if measured by the only objective criterion: the results and impacts they have on life.
It really just doesn't make sense. If I had a broken leg, I would want a doctor ASAP. If I had an emotional problem that I just did not know how to solve, I'd want to consult an expert on those. And I have.
It's just a case of the right tool for the job, so to speak. Nothing more than that. Many people would be leading much happier lives if that attitude barrier weren't there. So sad.
For me, it's not any stigma that gets in the way, it's the difficulty in finding a counselor I feel comfortable with. Just the thought of setting up the first meeting can be overwhelming because there might be no connection and then I'll have to continue the hunt. I recently had a couple sessions with a counselor, but was finding myself even more depressed than before I started. Being back at square one trying to find someone is not an easy place to be.
To be honest, doctors seem to love people like you! I've had several say they wish I was the really rigid, vigilant type, which I'm not. It would be good for you to try to find a balance though, because I worry that even though you may have a long life, you won't have a happy one. The goal should be to keep your BG's in a normal range as often as possible, and to correct highs or lows as soon as you reasonably can so that you are not out of range for several hours at a time. But you should also be able to enjoy social events and time with family and friends without constant concern. Have you met with a diabetes educator? They can help you work through any BG concerns you have and make adjustments if necessary. A therapist can also help you work through some of the inevitable frustration and anger that diabetes brings with it.
I think the anger I feel over not being properly treated has been my biggest mental challenge. When I think back at all the physicians and the ADA advice I cringe that I could have been so trusting. I am now in the hands of a great endo, on proper insulin therapy and low carb...my range went from 50 to 400 to NOW 80-115...so grateful to clear that anger away with action! I feel great to shed that load and will pray for others to come to terms with their particular condition...I'm 75 and raring to go!
Terry, what do you think constitutes symptomatic swings, and among the information you've encountered, did the level at which the "swinging" was taking place make any difference?
I.e., if I eat a 40g meal (fairly typical for lunch, my highest carb meal of the day), I'll swing 50-60mg/dl starting at 80-90, getting back down under 100 within 3 hours post-prandial. I might add that this takes some careful and less-than-dead-simple insulin administration, and is the absolute best I can do.
OTOH, that same 40g will cause about the same rise if I start at 110-120, but of course the peak is then 160-170.
Common sense tells me the latter is worse for me in terms of long-term health consequences, and I'm pretty sure I don't feel as well back down at 110 as I did before the meal. Of course, in this situation there's always a bit more insulin for correction in the bolus aiming at 85.
Anyway, just trying to get a good "picture" of all of this, and hearing other's thoughts and experiences is very helpful.