Post-diagnosis identity

I was diagnosed one year ago after a few years of more and more intense illness that was classified at several medical appointments as an eating disorder due to my contraindicated weight loss. Then my hardest challenge at T1 diagnosis was that I already had complications. I remember wishing that I had ‘just’ diabetes without the torture of neuropathy. I will add that I live remotely where it is difficult to get in to see a physician and my initial three misdiagnoses were delivered by nurses who were overrun with unattached patients. I look back now on my former self before T1D and I miss painfully who I was. As a minimalist I have avoided dependence on fancy things. This was my freedom and satisfaction: that I needed very little. I don’t mind the daily diabetic chores but I do mind the dependence on things I would never be able to make myself. I can make my own clothes, grow my own garden, raise my own meat but none of these things could sustain me since my most urgent need can only be met by pharma. I regret and resent that I have a need that I am unable to fulfill myself if I wanted to. It goes against my philosophy of self-reliance. Diabetes is forcing me to change my identity and I ask is this even possible for consciousness to achieve?

1 Like

We all of us need help sometimes, even Thoreau went home to his Mum for his laundry to be done and for a meal. Without insulin you wouldn’t be able to be self sufficient in every other way. Best wishes, Maureen

5 Likes

Hi Nini6. We have different paths and similar outcomes. I too had complications upon diagnosis. Actually, I had a lot of really bad complications by that time. And I understand and agree with you that dealing with diabetes is much preferable to dealing with the complications. I have said often that if all I had to do was worry about my blood sugar I really wouldn’t have much to worry about.

But I do challenge you on one of your assumptions about yourself. There are a lot of things that I used to do which I no longer am able to do. There are a lot of things I would do differently today if my conditions would allow. But, that’s not my reality. I have learned to look at things in life from a different point of view. Diabetes and related problems have caused me to make these shifts out of necessity. Before I was diagnosed I took an occasional aspirin and maybe a decongestant from time to time. I had no prescriptions in my name. Now… Well, you know how it goes. All of that being said I must tell you that diabetes may have changed a lot of what I do it may have taken things that I love away from me. But, it has not changed who I am. Who I am is how I’ve gotten through all of the pain, disappointment, sadness, loss and regrowth that has brought me to where I am today.

So Nini, when I read your post I truly do understand what you’re saying. I get it. Been there. But what I hear when I read this post of yours is that you, the essence of who you are, is no different. Things have changed. Everything isn’t as it used to be. How you go about your life is different out of necessity. But, Nini the minimalist self-sufficient individual has not gone any place.

1 Like

Thank you, Randy. Just to think I could be the same… is all I want. Not saying that I am such an awesome individual but since getting sick and then diagnosed a couple years later I have been missing myself. Witnessing your own self as a shadow of your former – is maybe mind-opening but also unbearable in the long term. I was always really fast and energetic and starting projects and intrigued by challenges and then, I was just lifeless. I am 5’8 and weighed 82 lbs at diagnosis. I then could not sit, stand, walk or sleep for months. I lost my job of course. Now I live between celebrating my fantastic improvement and the terror of the thought of ‘what if I can’t get my supplies’? I guess, to make these shifts you speak of is a matter of time… I hope I can make them also.

Pastelpainter, thank you for bringing a big smile to my face as i do, indeed, love Thoreau’s model of simplicity!! I thought it was hypocritical of him to leave his laundry for his mother, though… But I get where you were going with the metaphor. I could strip some of my pride and accept help more readily. Not my strong point and maybe my lesson that diabetes brought me? At any rate, I now consider from here on in the pharmacy my laundry place! :wink:

1 Like

I guess it is a bit difficult to do laundry if you only have a pond LOL

1 Like

Yeah, laundry in a pond, that’s pretty extreme and counterintuitive!!:roll_eyes::laughing:Thank you so much for that image! :thinking::see_no_evil: Pretty sure that Thoreau would have still gone to spend Life in the Woods even if he had been diabetic. He said he did not want to practice resignation. Mind you, he preceded Banting, so this is just hypothetical…

And then there were the Sunday dinners at the Emersons’. But hey, it is a big pond, and quite clean (I used to live in the neighborhood and visited it many times), even more so in the 19th C, so doing a little laundry in it wouldn’t be a crazy thing.

Speaking of compromising–or not–if you’re really really really serious about the self-reliance thing, and you have pigs or cows available… It’s possible to make your own insulin. I’m not recommending it, mind you, but that is how it was done originally and there are some very moving stories of how T1’s survived German occupation in WWII by figuring out how to make their own. This isn’t going to be like the modern recombinant human analog stuff like Lantus and Novolog, or even like the animal-based R/NPH stuff many of us had to endure a few decades back. But it can be done. The compromise there is that you’re not going to have nearly the same degree of control, which is going to impair your ability to adjust your dosage to your life rather than the other way around (the latter being what a lot of us “old timers” experienced for decades before MDI and pumping).

I suggest this more as a thought experiment than an actual recommendation. You could do it, but would you want to? I grew up at a time when Thoreau was a hero to a lot of people and I totally get the attraction of Thoreauvian self-reliance. But if you think about it in these terms, maybe the whole thing becomes more of an affirmative choice than an enforced condition. You could go it alone, but that involves some serious sacrifices and compromises of its own. In that sense the effort to get access to modern forms of treatment can be seen as a positive choice that will allow you far more independence and freedom. You don’t have any choice but to be chained to the T1 bear, but at least it can be made into a much tamer bear than it used to be.

2 Likes

I will play with this in my head for a moment: assuming I had a background in biochemical engineering to extract my own insulin from my animals, that’s likely going to result in some allergic reaction due to lack of laboratory facilities for purification… And, I guess, I will have to forge my own needle and sharpen it? And how would I test my BG? With ants like in Ancient Greece? Ok, let’s stop there😷 I see your point, though. I appreciate the mental imagery because it is soothing for me to remember that nobody woud want to be an island even if they had a clean pond and were non-diabetic. I still wish that my pharmacy would at least let me stock up on supplies more so that I could temporarily suspend my frequent trips to it which would make me feel less chained.

Here’s the story I was thinking of–Eva Saxl, who with her husband Victor figured out how to extract insulin from water buffaloes during the Japanese occupation of Shanghai, just using a medical textbook and a chem set borrowed from a Chinese chemist: https://en.wikipedia.org/wiki/Eva_Saxl

Like I say, pretty iffy, but you know, proves it could be done. Needles on the other hand… Don’t even want to think about that. :slight_smile:

1 Like

Yeah, I totally hear you on that. Do you have access to Caremark or one of the other mail-order pharmaceutical services? They typically do 90-day increments. Saves money on co-pays too. Worth looking into…

1 Like

Would like to look into mail-order supplies! Strips and needles in my mail box would be a definite upgrade to me!

“I can make my own clothes,”

If you really mean starting from scratch, without depending on modern society, you would have to start not only by growing and processing the fiber, but also making something like a stone spinning whorl using other stones, and then spinning for hours at a time. Wouldn’t you like to have some time left over to think and dream sometimes? Human society with its specializations has been around for a long, long time. Maybe there’s a reason for it.

“grow my own garden,”

Digging with your hands, or yet another stone you chipped down yourself, and hoping that there will never be a long drought, which would kill th you and your garden. Or a hurricane. Or hail. Or an unexpected plant epidemic: Remember the Irish potato famine? The people there didn’t enjoy their simple lives so much.

“raise my own meat”

Thete are still many people in sub-Saharan Africa who raise their own meat. Read about what happens when they have a prlonged drought.

Get used to the idea of living in human society and taking advantage of all of its good fruits, including anti-D drugs.

I just spent a morning studying in some ancient books which once would have taken great scholars weeks and enormous effort to find, and soon I’ll call my wife on the telephone just because I feel like chatting.

Just one man’s opinion.

1 Like

Though tedious, I relished the creative process of making things, even in the modern world. To me, spinning yarn was immensely relaxing, for example. The limitations my feet place on me create a defeating sense of idleness in me. Self-reliance was not the only driver when I dreamt up my lifestyle. I buy things made locally or pay a high price for something because I respect the artisan who made it, or the grower whose principles I share. With diabetes supplies there aren’t choices like that. I like your reminder of how any human life depends on factors outside our control. I forget that even healthy people can be subject to not having their most essential needs met and this is a valuable consideration to me.

Dr BB, I did find a mail-order pharmacy which I am going to use. Thank you for pointing me in that direction, didn’t realize we had those in Canada. This means I will only need to get my insulin at my brick-and-mortar drug store four times a year! This is very cool. :grinning:

Glad that was a helpful tip!

You remind me of my wife, who is a computer systems engineer but also a weaver, wool-carder and fabric artist, among other things. I think there’s a great pleasure in making useful things for yourself — nothing to apologize for in seeking to pursue that kind of life insofar as you can. I think it’s fairly typical to feel like T1 is this giant bull invading your personal china shop as you’re first getting a handle on it, but I think you’ll find that it looms less large as you do. Not talking days or even months of course, but it does get to seem more routine and less of a disabling disruption and threat.

1 Like

Not with the supplies themselves, but I’m much more conscious than I was before of the constant important choices I have to make. Every time I’m faced with some problematic food or eating situation, I’m very conscious of having to balance the amount of pleasure I’ll get from the food against the damage it will do. (For some reason, my team dietitian looked like she was about to have an attack when she heard this.) I often have to start calculating exhaustion and pain against bad habits and long-term damage when deciding to use the elevator or the stairs. I have to take BG, weight gain, and convenience into account when fiddling with - sorry, of course I mean “titrating” - my two kinds of insulin and two oral drugs. I am constantly having to decide which of the innumerable medical rituals to agree to. Like all of us, I also have to find solutions to minor problems like marking the date I took the insulin pen out of the refrigerator and disposing properly of needles both at home and elsewhere. And now one of my children is pressing on me to leave written instructions about what to do if I become incapacitated under various circumstances.

I spend a lot of my time cooking for large and unpredictable numbers of people from scratch, which really means from scratch, because I take some religious laws about food very seriously and in any case I just can’t stand the taste of prepackaged food. As far as food preparation goes, diabetes just makes the impossible a little more difficult.

I suppose that I would find the constant choices diabetes forces on me exciting, if the illness itself weren’t so unpleasant and frightening. Diabetes is consciousness-raising with a vengeance.

Thanks for reading.
M.

1 Like