What are we afraid of?

Community
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I was recently looking through the slews of conversations on TuDiabetes in preparation for a talk on how the issue of diabetes complications as approached through social media channels, and I noticed something interesting. This community is fantastic at giving love and support when one of our members posts about experiencing complications. We rush to give pep-talks, assure each other that it's not our fault, encourage each other to stay positive, send virtual hugs.... But we don't spend a lot of time sharing how we feel about diabetes complications.

Wanna talk about it? Here are some jumping-off questions:

Have you ever had dreams about diabetes complications? What are they like?

When you think of complications which do you think of first/most? Why?

How often do diabetes complications enter your mind? Do you try not to think about them? Or maybe find yourself thinking of them obsessively?

When you think about diabetes complications do you feel fear? Anger? Shame? Guilt? Determination? Sadness? Gratitude? Other things...?

Watch Manny's video "My Diabetes Nightmare"

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Since I just posted this one, I'm gonna go ahead and be the first to share.

I don't think much about complications. On purpose. I grew up not thinking about it, on purpose, and at this point I'm a pro. My folks received Diabetes Forecast for years, and encouraged me to read it, and I refused. To this day I've never read an issue. I don't want to know that maybe my elevated risk of heart disease could be slightly lowered if I do thus and so. It doesn't feel like something to celebrate to me, because all I get from it is "you have an elevated risk of heart disease". Thanks for the info, but right now I'm just trying to deal with my elevated risk of dropping dead in my sleep. I've got enough elevated risk on my plate without thinking about Diabetes Forecast's so-called "good news" (no disrespect to Diabetes Forecast intended. It's just the D news source I grew up avoiding).

A couple days ago Manny, Mike and I looked up the CDC list of diabetes complications. I already know most of them, but damn, that was a long, scary list. We were discussing it in a general way and finally stopped and Manny asked "how do you guys feel right now?". I felt like barfing. I was taking deep, cleansing breaths and talking in general, un-emotional terms and sitting in my office chair feeling like barfing. For the next day or so every time I started laughing I couldn't stop, and it became an embarrassing, manic, run-away laughing train. The kind that usually ends in sobbing.

I held it together, though, because I had things to get done. There's no time to feel this stuff! I mean, how long will it take?! Will I have to call in sick to work for the next week to stay home and feel?? Will I drop a bunch of weight because I can't eat and get all weak and spindly and undo months of hard work at the gym? Will my loved-ones need to stage an intervention? having never allowed myself the space to focus on it, I truly don't know.

So I guess at least right now that's how I feel: like I can't allow myself to feel much because it's a big, dark box of I-don't-know-what in there. I should maybe work on that.

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It is not any given complication in & of itself, it is the thought of never, ever getting rid of this horrible disease. That is what devastes me. This has totally destroyed me.

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my eyesight and my kidneys are my worst fear......................the kidneys quit working about 15 years ago and after some inteanse treatment started back working. my eyesite has benn ok for the most part.
i guess i'm just graetful i'm still here and halfway fuctioning
i'm determined not to thing to hard about what can happen

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I was at my regular doctor today to get a shot (Pertussin) and they handed me paperwork to fill out. This one asked for any other doctors I am currently seeing - After listing my foot doctor, eye doctor, heart doctor, urologist and endocronoligist I started to think about the complications that I now either have or trying to prevent. I really never thought about them until I was asked.

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I don't really worry much about complications. It might be because I was diagnosed later in life and so have much less time to accumulate them. But it also has to do with my attitude to "what ifs" in general and I avoid them like the plague. It's not like I'm one of those people who just doesn't worry much. Quite the opposite, I've wasted a lot of my life worrying about what bad things can happen and think it's just that...a waste of time and energy. So I learned to just look at what I need to do to stay out of the danger zone, do it to the best of my ability and beyond that I don't give it much thought. I won't deny that if I have some symptom or other I don't immediately go right to "uh oh, is this a complication raising its ugly head" but I just check it out, or take care of whatever it is and go on.

My Diabetes dreams are actually all about numbers, an obsessive but not particularly emotion laden topic. Oh, and I occasionally dream I "without realizing it" ate something I normally don't...like sugar or meat. But then I had those dreams long before my D diagnosis.

I guess one of the advantages of getting older is fears in general decrease. It's not that most of us get through life without having "bad things" happen to us, it's just that they happen, you get past them and so you know you can again.

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I have a similar attitude. If I have something obviously wrong with me (like, the past few days my stomach has been upset) then I sometimes begin to wonder. But this quote from above is pretty much dead on for me:

I don't want to know that maybe my elevated risk of heart disease could be slightly lowered if I do thus and so. It doesn't feel like something to celebrate to me, because all I get from it is "you have an elevated risk of heart disease". Thanks for the info, but right now I'm just trying to deal with my elevated risk of dropping dead in my sleep.

Usually, I'm trying hard to avoid the immediate dangers of extreme highs or lows, and thinking about much more than that would just make me depressed.

Like Zoe, I also don't worry about the future too much. I've already dealt with a ton of health-related stuff in my life that most people think are terrible, and I still have a great life. Complications may be a challenge, but I'll deal with them if/when they crop up, and I know I'll get through.

The one thing I do sometimes worry about is dying early and/or having no quality of life when I'm a senior. When I'm 65 I'll have had diabetes for well over 50 years, and that is not very old! I really want to be able to enjoy a retirement and not be dealing with a ton of complications and/or be dead (although I'd take the former to the latter any day, if given a choice).

But mostly, I just deal with day-to-day life and don't think about it.

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Do I think about, or dream about complications? Yep, just about every day in every way. I lived with complications for years in my mother so I know what they are, how bad they can be and how tragic they can be.

My chief fear, blindness. Mom was blind for the last 18 years of her life. My second worst fear, Dialysis. Mom was on Dialysis for the last 12 years of her life. Finally Nuropathy. Mom lost her life when the gangrene in her foot and hand broke off and attacked her organs. Despite surgery to remove most of her right hand we never got her back. In a way it was a blessing. Had she woken up and found we had taken a portion of her hand in an attempt to save her life she would have killed dad and I. Which is to not really mention her feet which were swelled up like two watermelons and had been for so long she could no longer walk. I suppose the black bile that was being continuously pumped form her stomach was also a complication, or the awful periods of watching her be out of her mind because her potassium was off balance and those awful hallucinations were all related to Gastopersis. So do I worry or dream about complicaitons yes I do, I have seen it.

What do I fear? Blindness is number 1, the rest are in order. Do I try not to think of them? I used too, but I distanced myself from moms death and so I guess I embrace them now.

Bad dreams? Mom passed in 1986 at age 48. I did nothing but dream of complications for almost 15 years. Now days I do not so much. When my sons were little it was worse. I was gambling with their lives as well as mine. Nowadays I am only gambling with mine and my wife's. So things are a little less vivid. Now if one of my children or grandchildren were Dx'd, the dreams and the horror would return and well i doubt I could live with myself once again.

Rick Phillips

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When I was first diagnosed four and half years ago at age 46 as a t1, I had so many fears about possible complications I was paralyzed by them. With time and the good fortune of relatively good health (as far as I know), most of those fears have disappeared. For a time, I was afraid of going blind or dying in my sleep from a low. But the longer I live with this disease, the less I fear. However, I do think that is because in some measure I live in a kind of state of denial. But, I am okay with that. I do what I need to to feel as good as I can on a daily basis and hope for the best. If I let myself think about the 'what-ifs", I am certain the best and healthiest years of my life would pass me by shrouded in a cloud of fear. I will deal with complications if and when they arise. But until that happens I am choosing to take the ignorance is bliss approach. It works for me.

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Wow, you guys are depressing me ! But I appreciate the honesty.
Rick - I'm very sorry to hear about your Mom.

I was diagnosed at age 5, and it wasn't till my early 20's that I really became aware of the possible complications. Until then, I only tested urine, which was usually 2+ or 3+, and thought it's only value was input for the doctor, to decide whether to increase my dosage for my once/day injection of Lente. (he usually said, take 1 more unit, see ya in 6 months.)
(translation -> urine testing of 2+/3+ means BGs are 250-400.)

Later I would hear doctors say some folks get complications, some don't, and we really don't know why (before DCCT). I just told myself I'd be one of the lucky ones. When I started testing BGs, and learned what the 'normal' non-diabetic range was, I started to hear that it was the high sugars that contributed to complications. Thus my journey to get closer to 'normal' bgs began. But somehow, I still was thinking, I'll be one of the lucky ones, as I struggled with high BGs using NPH/Reg, with 2 or 3 injections/day, and doing the best I could.

Then came my rude awaking in 1986 when I had significant retinopathy (both eyes), and for 6 months saw nothing from my left eye. A vitrectomy restored partial vision, but I rely mostly on my right eye, which had many laser treatments. Well, I guess I wasn't so lucky after all. (Or maybe I am, my left eye is my only complication at this point, 27 years later !)

But what kept me going through it all was the Serenity Prayer - Change what I can, and accept what I have no control over.

I do think about possible complications, maybe more now with 48 years of T1D, but I try to redirect my thoughts to recognize I'm doing all I can (controlling BG, eating healthy, etc), and focus on finding yet new things (insulin pumps, CGMS, DOC).

If more complications come my way, at least I can say I did my best. But I do maintain a 'healthy' sense of fear, to keep me on track with my 'preventive' choices.

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i havent ever had dreams about serious long term complications. my dreams are all about being low and not being able to get to the sugar, having someone else in the next room but being unable to shout out to them. i also have ones where someone is MAKING me eat carbs and im telling them no. i do have lots of dreams about lipodystrophy, as me cde had a Little suitcase with fake skin set into it with varying lipodystrophic bumps and lumps. i always have dreams that i have big ones.

when i do think of complications, theyre usually brought on by seeing someone with an amputation, seeing a blind person, passing the dialysis centre in my city, or the hospital where i was diagnosed. i worry most about amputation, blindness and kidney failure and diabetic foot, with sores that never heal. i try not to think of them but when i was first diagnosed a year and a half ago, it was all i thought about. its easier to put out of my mind now.

when i think of complications, i am afraid. who will take care of me? what horrible burden will i be on my loved ones? i hate thinking someone might have to take care of me because i will be immobile/unable to work.

right. back to not thinking about this.

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I think about it quite a bit, I've lost quite a bit of hair on my legs. Not,as bad as losing toes or whatever but the doc has said it's related which makes me think "what else might it be causing?" Are the cramps "old guy running cramps?" or are they "diabetes cramps [somehow...]?"

When I went to the eye doctor last time, he did the exam and goes "well, you're eyes are shot..." which I was like "really?" and he said "yep, you need reading glasses or bifocals..."so I have both.

Pretty much any problem you have may become more complicated with diabetes. Delayed healing has other challenges and many "things" involved injured tissue in some way or another. I am pretty engaged with myself but will pretty much go to the doctor to get anything odd checked out.

I recently didn't run for about a month. I ran the Hollywood 1/2 Marathon w/ my buddy drsoosie!! About 9 miles into the race, I had some cramps, maybe it was tweaking before then but I walked/ran the rest of the way (2:18...slowest time ever for me.:-(..) but had a pretty enjoyable time, just running somewhere new with interesting scenery and kibbitzing for 9 miles.

The next day, I noticed my leg swelling pretty badly, put on some compression socks and flew home. The next day it was like 1.5x its normal size so I went to the doc. They found a 1x4x5 cm hematoma, and just said to follow up with my doc if it didn't get better. It didn't. That night, my ankle turned black and blue and, over the next few days, pretty much my whole foot turned and then my toes. Back to more docs, just a sprain which, it seems has gone away. I found a great podiatrist in the course of it and will go back to her if anything else happens. All the docs in the chain of docs were pretty good, although some better than others, and I am glad to be off the D/L. At the same time, it's constantly on my mind.

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My thoughts after 50 years..

Have you ever had dreams about diabetes complications? What are they like? Not since I was 11 and told I would not live to be 50. Turning 50 was a major moment of success. Still had weird moments about a Toti Fields interview--TV actress, T2, lost limbs. Still scares me.

When you think of complications which do you think of first/most? Why? See the Toti Fields reference above--still scares the!!!! out of me.

How often do diabetes complications enter your mind? Do you try not to think about Too many better things to do. My 37th wedding anniversary is this weekend....

When you think about diabetes complications do you feel fear? Anger? Shame? Guilt? Determination? Sadness? Gratitude? Other things...? After my many years, I have had some devastating retinopathy, with some painful treatment. After 15-20 years I can read, see, drive. Amputation is my only real fear anymore--and it seems VERY distant.

Being diabetic is a major part of who I am. And my husband is the rock--50 years of D and 37 years with a wonderful partner. I have been so lucky.

Fear? Sure Anger? After 50 years who will I be angry with? Shame? Guilt? Both are a huge NO! Determination? How would I survive without it? Gratitude? For the wonderful parents who surpassed the odds to teach an 11 year old to handle this and a most wonderful husband who has been my rock forever? OMG OF COURSE!!

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I think that is a terrific way to think of such things. You know by the time my mom was 30 she paced the halls of our house at night, all night every night. I suppose it makes one a little touchy.

Rick

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......sigh. Now I'm the one who can't stop crying.
In a few weeks I'll be 60 years old. Never, ever, did I dream I'd live past 40.
Diabetes is rampant on my dad's side of the family. My g'ma and her 8 brothers and sisters came over from Norway on "the boat". They all had large families as did their kids. It's the generation of the grandchildren of the 8 siblings where the db struck.
I grew up watching people get diagnosed, get complications, and die long, slow deaths. 28 have passed at this time, with 3 more in pretty bad shape. Most of them were dx'd at about age 10 and died in their 30's.
I was fortunate to be spared until I was 20, just as the fizz tablets were replaced by TesTape and the glass syringes replaced by disposables. But from day one, I lived in fear. 24/7. I was nearly paralyzed with fear. I'd get panic attacks and start shaking, thinking about vision loss and amputations. I canceled my engagement because I was certain I didn't have a future. (Probably a good decision, because he's had 3 failed marriages....)
I was drowning in sorrow all through my 20's and 30's. In my 40's, it seems like I simply became apathetic and didn't care if I died, which put the fear on the back burner. I also was fascinated with home glucose monitoring and tested quite frequently.
Twelve years ago I developed retinopathy. After the diagnosis, I walked home 5 miles from the clinic, without really having any recollection of doing it. I was in a state of shock. The laser treatments were uneventful, but, as the extra vessels died and shrunk, they pulled the retina off the back of the eye. When I went back to the doc he scheduled surgery for that afternoon. I had to lie facedown, not moving, for the next 7 days. I didn't realize until later that he told my mother he hoped I'd be "able to see shapes" in that eye. Today, with corrective lenses, I have 20/30 vision in that eye and 20/20 in the other. The laser sacrificed a lot of my peripheral vision so I had to give up driving. And I still bump into people on a crowded street.
3 years ago last August I had surgery for ovarian cancer. Surgical complications sent me into respiratory and kidney failure. I was not expected to live. But, 4 months later, just in time for Christmas, I left the rehab center, walking on my own and without supplemental oxygen.
But I was still on dialysis. Dialysis is a true shot of diabetic reality. Lots of blindness, many amputations. I got to be good friends with the man in the chair next to me. When I met him, he was missing a foot, and over the next year both legs were amputated above the knee. Pretty soon he was so weak that the treatments overwhelmed his body and he had to come every day. One day his chair was empty. He had died. I was so mad I could have slammed my fist through plate glass window.
14 months after starting dialysis, my doc told me that I didn't need to go anymore. He said it was "nearly a miracle", but my kidneys had been slowly improving over the months.

So, where does that leave me today? Am I still afraid. Absolutely. I'm afraid that the retinopathy will come back, that my kidneys will deteriorate, that I'll be a burden to my family, or that I'll die alone and no one will remember me.

Sometimes I'm envious of the d-peeps who have good health. But mostly I'm happy for them. And most of the time I'm very very proud of myself for living well with complications (I've also had frozen shoulder, trigger finger, and a short phase of gastroparesis).

I lead an active life and keep busy. I go to the Y every day and enjoy being out in nature. I try not to take things for granted. And I try to tell fear that "you're not the boss of me". Yet, last week when my nephew called to tell me he was getting married next May, I wondered if I'll still be around and what shape I'll be in. But, I did see some very glamourous dresses at Macy's today........

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Wow, Kathy. Very moving post, and kudos to you for living such an amazing life and having such a great attitude (and attitude is everything!.

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Even though your leg didn't want to cooperate we still had a great time!! And yes...i do think when anything is wrong we will always go to our D first as a cause.

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Really moving posts here guys, feel for you all.

My mother was a type 1, hypo unaware, "brittle" she died in 2005 age 46 after falling into a hypo whilst I was away at college, stayed in it too long and was left with zero brain activity. We had to switch off life support as she couldn't even breath by herself. Watching her die over several hours will always be with me and I will always be fearful of the darker side of diabetes.

So I fear hypos, I also saw the effects of frequent hypos on her, I'm convinced she started to suffer brain damage after years of them.

Me personally? I've had mild retinopathy after 16 years as a type 1, since being on the pump, joining this site and shaving a couple of points off my HbA1c this has completely healed. No other complication that I know of to date. Long may it continue.

As with others, when allow my mind to dwell on it, I worry about dialysis, blindness an early death, the list is a long one. The possibilty of me passing it on to children I may have one day also bothers me greatly.

Also the fact that diabetes is such a monster, that despite good control and best efforts it can be unpredictable and hit you from left field when you least expect it.

I guess all we can do is keep making informed decisions and doing the best we can with what we'v been given. It's not all doom and gloom, but its a real PITA :)

All the best guys,

B

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That's for sure! It was weird to have such a good time at the same time I was going "OMGamIgonnarunagain?" the whole time. Fortunately, I am back at it these days. Nothing particular until the race in November but training will get going. I also entered a thing for the Twin Cities Marathon through Medtronic and sort of forgot about it but then they emailed that they are thinking about it so I'd do that too. It's the same weekend as Chicago I think so it would fit in with the local group. We'll see how it goes. I'm trying Vitamin D to see if that might help the cramp issue.

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I have had a complications probably related to diabetes and some probably linked to years of very poor control in my 20's and thirty's. Included are lymphedema, neuropathy, three vitrectomies, cataracts and a achilles heel surgical wound that did not heal for 4 years. This may be too much to share but if we are facing our fears - add erectile disfunction.

When asked, I always reflexively respond that I am in good health. Because that is the way I think about myself. I guess I was fortunate in my childhood upbringing. I was taught by my grandmother to live everyday like it was my last day - to go to bed each night with no regrets. This helps keep me centered and I don't really worry about the next body part that is going to fall off.

I realize that this approach is not for everyone and may not even be the best approach for most people. Just wanted to share another way of coping.