h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Congratulations on an excellent article, the best I've read (in my opinion anyway) on IDDM, of which I was diagnosed with when I was 13, 9 years ago now...

It was good to read someone put so well the fustrating situation diabetics experience trying to control their blood sugar (I guess that should be blood glucose, but I'm already set in my ways as well as the restriction of 'spontaneity'. I have found this (along with the occasional hypo from trying "too hard" to keep my bsl's at a "perfect" level) to be one of the most alienating and fustrating aspects of the condition.

Because there is so much to explain about my diabetes, I tend to not tell people that I've got it until they've known me for a while - so they DON'T think to themselves "there's that diabetic over there, poor guy" but they just see me, a person who just happens to have diabetes.

Regarding the "widely acknowledged tendency of insulin-dependent diabetics to episodes of depression.", well for the first 8 or so years of my life with diabetes, I was diagnosed and treated for "severe depression" (I spent most of those 8 years on the highest possible doses of several different "pills", including good old prozac) and actually seriously believed I would be better off dead. In fact I made many attempts, not one of which worked, due to me having some really good friends at the time who cared more about me then I did at the time. Thankfully I was able to finally "shake off" the depression, but my worry is that for those years I didn't look after myself properly, and spent much time in hospitals being treated for "Diabetic Ketoacidocis" as a direct result, most likely doing a fair bit of damage to my own body and increasing my chances of getting complications in later life. My point is that diabetes and depression can "feed" off each other - the depression makes you feel like something that someone stepped in, so you say to yourself "I don't deserve insulin", stop doing the insulin injections and therefore feel even worse, and so goes the downward spiral... I still do find being diabetic can be quite depressing at times, but at least I can live with it - I've got friends with cystic fibrosis who are heaps worse off then me.

In my experience, most medical people say that diabetics can lead a healthy, normal life just like any other person. Well, I'm the only "normal" (LOL) person I know who has to ensure that they eat proper meals or suffer from hypo's (low blood sugar) as a direct consequence, who has to carry food with them in case of a hypo, and has to disappear off (my friends don't like me injecting in front of them - it reminds them of a friend of ours who got hooked on heroin, overdosed & died) to inject insulin 4 times a day. When I meet a doctor who has to deal with diabetes from day to day in their own personal life, then I might take notice of what they say, otherwise they're what I'd call "textbook experts", the only real way of knowing what a diabetic goes through is to be one yourself.

Add to all this the general public's lack of understanding of what insulin dependant diabetes is and how it's treated - I've had people who know I'm diabetic try and stop me from getting something to eat when I was in the middle of a severe hypo, and if one more person says "if you're diabetic then you must not be able to feel those needles anymore" I swear I'll scream blue murder - and I think it becomes clear that a diabetics life is not as easy as the doctors tried to convince me it would be when I was first diagnosed.

Sorry, but this is a subject that I have spent a particularly long time thinking about, and this is the first forum I've had the chance to add my bit in...

Thanks for the congratulations, and sorry to see that it's been so long since you actually wrote to express them - I tend not to pay so much attention to the articles I've written or edited if it's been a while since they were 'released'!

I know what you mean about there being a lot to explain, and so much to say that means absolutely nothing like what it should to so many people. It's not only a problem of 'textbook experts' - even diabetics have difficulties relating to each other's personal experiences. Diabetes is fundamentally alienating, and there's little you can do to change that, even with a lifetime's experience.

I'm intrigued by the idea that diabetes and depression can '"feed" off each other', and I'd ask if you have any ideas about how such a reinforcement could occur? I had my own share of problems, too, especially as a teenager.

I can point the way to a couple more interesting fora, should you be interested.

Regards,

H.

Hi maddestman
I have a genetic disorder of the blood and know exactly what you mean about textbook practitioners. They tell me that keeping a needle in the abdomen for 12 hours is not uncomfortable, that carrying an infusion pump all over the place is 'normal'.
And yes...if i had a penny for everytime someone says 'you must be used to needles by now.....'
Are people the same everywhere?

Sue

I've had diabetes since 11, I am now 49! How I cope with it is I just keep my head down and get on with it; because I can't change it. How I have stopped it getting me down over the years, and believe me it has a go, is to focus on the things I enjoy, and I do it with a passion. I find it helps make ALL THE HASSLE worthwhile. I do try hard to control it well, otherwise what's the point? I wasn't perfect either in my teans, but made my mind up to master it because of the things I enjoyed doing in life. Here I am nearly 40 years on, bouncing along with even greater passion for enjoying things, but determined to keep as well as I can. It is getting very hard as the years go by, but I feel pressing on is the only alternative.
Good luck fellow insulin addicts.

Hi 226398!

I am exceptionally impressed with your staying power - you're one of the very few people I know to have had diabetes longer than me (32 years)! I'm equally impressed with your attitude, which I suspect to be exactly the right one. I can't say I could describe myself as an "insulin addict", though...

I'v had type 1 Diabetes for about 8 years now and I was very interested to hear about the lack of excitment and variety in lifestyle due to the rigid schedule we must keep. I am a very abstract minded artistic person and Diabetes has all but distroyed my ability to experience life outside of a suburban definition of stability. Having just graduated high school my awareness of this has increased. My high school sponsored a number of environmental learning trips to places like africa, mexico, and costa rica three times a year. Dispite having up to six oppertunities to travel the globe on the state's dime in under two years, my IDDM created too much uncertianty, not to meantion paperwork and liability discussions with the school district, that I was forced to stay home. I've also noticed that I have become obsessive compulsive about preperation whenever I leave a place. Forgetting your insulin pen out at dinner can mean having to drive back home or risk a high glucose level by waiting ultil you get home. Worrying about these things have made me worry about other things, like my keys and my wallet. It takes me longer to double check that I am ready to go then it takes me to get ready to go in the first place! And due to my abstract/absent minded nature, I forget to take my injections about twice a week, after 8 years even. And don't get me started about those "i thought you weren't allowed to eat sugar" people. Well, I just wanted to say something about the lesser known bummers about IDDM, thanks for the great article, happy trails.

ml.

I'm sorry to hear that your diabetes has had such a restricting effect on your life. I have had IDDM for nine years now and it has never held me back from what I want to do. It can make things such as travelling or strenuous activity more difficult - but not impossible. My health care team have always encouraged me to do what I want without letting my diabetes hold me back. So sure it can be a "bummer" but there's nothing you can do about that, you just have get on with life and not let your diabetes get in the way.

I just wanted to mention that the supplement L-Lysine can help to prevent diabetic retinopathy and other end-organ damage. This product is available OTC in the US from health food stores. It recently was cleared for non-perscription sale in Canada. Usual dosage is 500 Mg per day. The product is inexpensive. L-Lysine is an Aldose Reductase antagonist and inhibitor. You can look it up.


Mark

hi,its great to hear about others who suffer, my name is gary im insulin dependant and unlike most of you i have only been dependant for 10 months prior to that i did not know or want to know anything about the subject,all by the way im 55 years young,anyway i agree its difficult friends dont really under stand and needles well no one really likes needles, at first testing blood sugar levels six times a day and constant hypos did get me down but working full time and keeping busy and not for getting being a praticing budist i dont fell to bad,kidneys are not as they should be but by keeping busy it does help me.