T1DM - Compared to a lot of other people, we've got it easy

I also posted this on my blog and I’m expecting to catch hell for writing this. Trust me, this is the toned down version from the original.

Everyone with a chronic disease is going to have days where they just want to give in. While it’s a bad thing to have, compared to some of the other things we could come down with, in my mind, we’re pretty lucky. We see little kids coming in with inoperable brain tumors or leukemia and at best weeks to live. We have something where we give ourselves shots, with very small needles, 6-10 times per day and have to count carbs. We’re not the patients who are on oral chemotherapy for 6-8 years with chronic diarrhea so bad that it is debilitating and we’re not wasting away from our 5th different chemotherapy with the hopes of being in the 10% that will respond just to grasp an extra few weeks. We can be healthy if we just take the 30 seconds every few hours to test our blood and give a shot before we eat. We’re not suffering the pain and debilitation that comes with diseases like MS or Parkinson’s where there is nothing to do but wait until your muscles waste and you die. We can fight this disease with an extraordinarily simple treatment regimen, test and give insulin, repeat every few hours. I can tell your dozens of stories of men and women who are going to extraordinary lengths and having horrible toxicities for a 3% increased chance of survival from their breast, prostate, colon, brain, renal, liver, adrenal, bone, neuroendocrine, lung, pancreatic, blood and every other tumor out there. Compared to the majority of disease out there, we’ve got it easy. We really do. I’m just sick of reading posts, not only on here, of people complaining about their disease like it’s the worst thing in the world. It’s not fun, but it’s not bad. Go for one day to a children’s oncology floor and see a little girl who is happy as can be even though she is missing 1/4 of her brain with her right side completely paralyzed because of the operation. She’s smiling and making the best of her life.

You have to accept your disease, not fight it. You can’t fight your genetics and your immune system. While it sucks, just be glad you may have a defective HLA gene and not defective BCR-ABL, BRCA, EML4-ALK, VHL or one of the hundreds of other mutations that can cause horrible diseases that will kill the person no matter how hard they try. Once you get your BG down and get in the routine, it will just start to feel normal again. Don’t look at this disease from a perspective of years, months or weeks. Just look at it as today. Today I’m going to test and give insulin. Today I’m going to try to keep the levels down. Today was a success. Today’s success will prepare me for success tomorrow. We don’t have to be perfect every single time, every single day, every single meal, we just have to be pretty good on the average to be healthy.

If you sit there and bemoan your life and curse your health, of course you’re going to hate life. Move on, accept that your body is defective, accept that you have a disease, accept that you’re not like everyone else, accept that you do have more responsibility, accept that you are you. You’re not going to change, this isn’t going to go away and by not treating yourself, you’re only going to make your life more miserable.

I’m not going to raise hell b/c I tend to think the way you do. I understand for 37 years “IT COULD BE WORSE JUST LOOK AROUND YOU AND SEE THE LITTLE CHILDREN WHo HAVE THINGS MUCH WORSE THAN YOU!” My mom said that when I was 10 and took diabetes and 26 years later I said the samething to my daughter when she was 11 and took Type 1 like her mom. Now she is 22 and a mom of 3 kids of her own!

you posted a good write up.

I agree with everything you said. An attitude of gratitude goes a long way. I was taught to never feel sorry for myself relative to this disease and I have had it for fifty years. It cannot be an excuse to not do something if you really can. I also have learned to adjust for it as life goes on, in small ways, like if my BS is too high or too low to exercise I wait the right amount of time and then I go. The biggest word is acceptance. Then gratitude. Sometimes emotions are the hardest part of this disease, but they can be dealt with , given the opportunity.

I’m actually hoping for some sparks to fly. If that happens then hopefully this post will get the attention of the people it’s directed to. I’m not the type of person to go post this on someone’s blog or forum post even though it’s verbatim what I want to tell them.

I guess I see this differently. I think as you feel empathy for others that have what you call worse, I think there should not be boundries for Empathy, support or care…

Look, I have a A Adrenal Tumor, and the rare part it was Cancer, so I call it a fight to servive, it was. And I have Had Diabetes since I was 16 and I will tell you it has been a Fight for Understanding both for me and back to me by family and friends. I don’t think its fair to make judgements on what is worse, were all humans and EVEN those its Diabetes and Others have life threatening illness, like I did, and I think Diabetes is like that to. It can go into a Life threatening Mode, and we all do fight to control it so it won’t happen, and even with that, it can go south and KILL US.
I am not here to argue your point, but I just think we are here to help and care and support. Not tell everyone with Diabetes to hush and not complain…

I am not sure that there isn’t room in a community for different perspectives. I agree and probably sort of going what you are suggested, although I also look at every test as an opportunity to kick ass, rather than ‘accepting’ it, I am trying to ‘beat’ something. Unfortunately, my numbers are a bit dull so it’s perhaps not as dramatic as all that. I agree that other diseases are more ghastly however diabetes can be a tremendous psychologial weight too? I think that insulin is serious shit. I used to party quite heavily and would definitely lump insulin in with “hard” drugs like coke or heroin, rather than alcohol/ weed because 1) it can kill you (I know about drunk driving and that’s not good either but, in moderation, booze is ok and well, it’s quite a bit more practical given it’s ready availability) and also the way that a good insulin buzz really gets you thinking and, in many of my experiences, it’s not really a ‘good buzz’ in any way? Despite being fairly positive about it, when I get low, particularly when I’m occupied, distracted, busy, whatever, I will get serious downer vibes going on. And I don’t have perhaps as much trouble as other people have recounted with control or whatever? I think that this side of it is not adequately treated. I could tell AcidDoctor that “I feel depressed as hell when I am zonked out of my gourd on insulin” and she’d say "1) don’t get zonked out of your gourd and 2) either give me anti-depressants, which I’m not that interested in as jelly beans seem to cure it fairly well or refer me to a psychiatrist who would offer to give me anti-depressants. Now the party hound side of me would not necessarily be averse to an Rx for topical use of valium or something like that but they probably would last about 1 weekend and either 6 episodes of Star Wars or LOTR. Hmmmm. I am not sure the medical industry has the tools to really deal with something like this without a more accomodaiting mental health system and good benefits t

@hismouse - I agree that there is empathy and there are days where diabetes (either type) completely sucks. I hae bad days just like everyone else. There are days where I’m down and just hate the cards that have been dealt. However I don’t let that persist, give up on the disease and walk around with an A1C of 11+ either. The reason I wrote this post is the people become way to introspective about their problems and get the pitiful me attitude, when it the grand scheme of things it’s really just another day. I have no problem with people complaining about a bad day or a bad week of control, been there, done that… but I keep it in perspective and don’t try to have everyone pat me on the back and tell me ohhh it’s going to be all right, you’ll be just fine. What I am saying is that the minority of people out there who try to cry their way out of the disease and ignore it are delusional at best and they are only hurting themselves. Especially in today’s world with the amazing tools we have to treat the disease. I’m not comparing diabetes to cancer or vice versa, I am saying that people need to put what they have in perspective of the real world. Everything can kill you. Flintstones vitamins can kill you, vitamin C can kill you, insulin can kill you, one of the compounds I use if it’s in the air to level you can smell it you are past the lethal dose (osmium tetroxide)!

@Acidrock - I played college football on the d-line and weighed in at 275, drinking heavy was my middle name! I don’t get depressed when I’m over-insulined, I just get pissy and mean.

Well, I was talking about the auteurs of the “diabetes sucks” posts. I am certainly pissy and mean if anyone talks to me when my BG is faded, although I can sort of keep a leash on that too, but the thoughts in my head, in those lows where I’ve drifted off, like 30s or 40s, with IOB, which for me seems to produce a more visceral buzz than just a shade into the 60s because I overestimated some carbs, produce pretty depressing thoughts, not always about diabetes either, it’s crept into work, home improvements, grocery shopping, running (I can totally tell when I run low while I’m running as my form sort of gets more challenging and my pace becomes harder to hold…), sitting on my butt reading a book, etc. Once I get those thoughts, I usually use the bleakness of them as a cue “dude, where’s your meter?” and fix it. It may also be that over time, hypo symptoms change? I used to sweat like a mofo but don’t do that any more but get the psych things a lot more during hypos. Maybe that’s just me or me and 5% of my codiabetics but I think that it may contribute to a lot of people’s perceptible aversions to lows? I think that if doctors would recognize this, it would be useful.

Perhaps if 20 or 30% of the people this might happen to would listen to a doc say “look, you could get bummed out, but it’s not the end. Have some glucose, not too much, put on some Allman Brothers, “Mountain Jam” works well and sit back and relax and wait a while and feel good” those people might feel better and the community could have a better perspective of how the nuts and bolts work?

Maybe the medical industry doesn’t do this though since 50 years ago they were treating depression with insulin, as noted in Sylvia Plath’s “The Bell Jar”?

I can’t agree with you more! When I was a child I was hospitalized for DKA. I was roomed with another little girl. She had Leukemia. Constantly getting sick for the short time I was there. I remember thinking boy I’m glad I have Diabetes. I couldn’t have been no older than 10. Whenever I’m having one of my “poor me” days I think about all the other diseases and even circumstances out there. I may not be 100% healthy, but I have a home, health insurance and a wonderful husband.

@Danny - If a blind, double amputee w/ or w/o dialysis is managing their own diabetes they deserve a medal.

@Antonia - Agreed.

SuFu, I’m with you. I think I have a strange perspective on my daughter being diagnosed with diabetes, because we lost our first child to DiGeorge Syndrome & a severe heart defect. He was 8 months old & spent 4 months of his life in the pediatric ICU, undergoing multiple surgeries & fighting infections. When Samantha was admitted to the ICU, it hit me hard, but I knew I was going to walk out of there with her, which was so much better than leaving the hospital without our child. T1 is a tough battle, but comparatively, it’s not in the same realm.

@samsmom - So sorry to hear that. That’s a brutal situation for any parent.

I agree that we all need to take charge and get a grip.

I also am a firm believer in whining, complaining, venting and griping. It just seems to make some of us feel better to make an unjoyful noise when things are not going well, e.g. when we get a weird high or low out of the blue. Or when what worked last week suddenly doesn’t seem to be working today and we can’t figure out why.

Giving each other permission to vent our feelings doesn’t excuse us from getting on with it. No one is going to manage our diabetes for us; they might advise us and help us, but if we go home and stop caring, no one is going to come running through the door with our correct dose of insulin at the correct time and say, “Hey, I think you forgot this.”

We do have to take care of ourselves and we are blessed to have all these neat new gadgets, tools and medicines to use to keep in the zone.

Of course having diabetes is nothing like the kidney cancer that ravaged and killed my beloved brother at the age of 47. I would feel scalded with shame if I ever gave even the slightest hint that I thought what I have is anything close to what he went through.

I guess my position is, “Go ahead and vent. Now get on with it.”