Consider with this much experience, how has diabetes fundamentally effected the ways you think about & filter things?!?!
How has our diabetes changed our psychology whether we are aware of it or not? Any of us could give the dopey death, dismemberment, gangrene, impotence, blindness, infertility speeches which we have been hammered with our entire lives....
Looking for discussion amongst my diabetic peers and elders... whether diabetes has changed the way we process, view things mentally? It certainly has effected our bodies... how has it effected our minds???
Well I have had T1 for 49 years and counting. For me though it's not so much about how long I have had it as it is about how early I got it (at 2yrs old). Back in my day we did not have anything like pumps or CGMS's. We tested urine for sugar and took long- lasting slow-working insulin. I remember having 2-3 hypoglycemic reactions a week especially at night when I was sleeping. I would wake up screaming for my parents as my bed would spin like a kaleidoscope as I would pass out. Nobody ever thinks about how this would affect a kids psyche. I have always run higher than the doctors would like although I have always tried to control my glucose as best I could. They always push trying to eliminate complications but they don't seem to realize the fear of low blood sugar. I know that this early pattern has affected my whole life. I am a seriously risk-averse person.
Thank you for taking part! (We are very close in terms of years with this dragon we share.
I want to understand the ways I am unaware this beast has changed/effects us?
I believe my Type 1 has taught me potent skepticism, though I cannot prove it. No @@(#@_#&@& gizmo in the world will take the ashes from our souls, the scars from our bodies/minds it has surely left on us over time and to those who love us even more.
How we mentally, psychologically cope is surely the right direction, not the toys so many love-need.
I miss the Clini-stix ;)
They never taught me disgust, frustration, annoyance, or to give up hope on any level. They never hurt in the least. Readings whatever they were never caused obsession, sheer panic
Can we say the same for the current "toys"? Its entirely the wrong direction, the dead wrong focus in my view. Sigh....
As "risk averse", do you balk at new approaches, experimental technique(s) which appear to have serious merit? Being understandably averse (IMHO) how can you balance the hypo fear with the foolish mantra "...lower is better, lower is better..." too many advocate?
I understand your fear, and embrace it. Let us speak honestly as peers...
You may be opening Pandora's Box with me. I could recount SO many stories about some things both you and Susan haves said. For instance I once had a Diabetic "Specialist" who was supposed to be a "Leader" in this field tell me that he could simply tell by "looking at my numbers" that I "obviously didn't care about taking care of my diabetes". I never hated someone so much in all my life.
I've also been told by an ex-girlfriend that I "used my diabetes as an excuse" just to not do certain things she wanted to do. Like any of us would rather not have diabetes and be able to do whatever, whenever we wanted just like most people can.
On the one hand I am known for being very cynical and a pessimist. No one seems to realize that behind my sarcastic exterior is a very "determined to go on" individual who has had to get up and face another day of being an insulin dependent diabetic for another day. It's a relationship that no matter how bad or good you can't divorce it, hide from it, take time off from it.
I know I am preachi8ng to the choir here, but maybe someone else will read this and feel like expressing themselves as well.
Do you remember the sole thing which remained in Pamdora's box when she opened it, loosing its evils upon mankind? The spirit of hope...
Deliberate choice on your part or irony?
Did you suffer the imbecile "expert" or leave footprints (hopeful grin)???
Know what a skeptic is... someone who is a seeker of knowledge, a disbeliever of commonly held beliefs. Most intend the term entirely negatively, the truth, it is not at all.
I agree about the skeptic. I am a pessimist and most people think that is a bad thing (especially all my optimistic friends) but I remind them if we were all complacent and accepted everything as great and no one pointed out "what could be better" then man never would have progressed from a cave dweller. etc., etc.
Wow, I rarely hear of people who have had diabetes as long as I have or longer. I'm into my 35th year....diagnosed in 1978 at the age of 12. Good luck to you...
Being told at the age of 14 that by 45 you will either be dead, blind or in a wheelchair due to loss of limb does change your perspective on life! I was told "have your children early so you can see them graduate from high school" and "travel while you are young enough to be able to see things". So I had my son at the age of 23, and took him on trips when he was younger than I otherwise would have, so that I would be able to see things and show him things, and make sure he experienced a little of a world where not everyone speaks English, where it is an adventure to read the road signs and menus and experience a different culture.
And of course, I was never going to be old enough to retire, so why plan for it?
Now that I am 61, I am reconsidering that last one, and wondering what I would have done had I not been assured by my doctors that I would never live that long!
In terms of my psychology, it has had a couple of effects. Since I am in my 16th year past the time when I was not supposed to be able to get up and do things and see things, I do not take a cell phone or a set of headphones when I take a walk - I don't want to miss the sound of the birds, the colors of the trees and the flowers and the brilliant blue sky and the sunlight sparkling on the water or on the snow, and the feel of the breeze on my face - all those sensory memories to treasure and to revel in at the present moment. Diabetes has made me grateful for those!
And diabetes has made me cautious. Now that hypoglycemic unawareness is a serious issue in my life, I am not as likely as I would otherwise be to rent an RV and travel to somewhere that will be unfamiliar, or to plan a trip on my own by any mode of transportation somewhere where I don't know if I could communicate effectively with police officers and medical personnel. So it has definitely put a crimp in my sense of adventure...
The experiences of dealing with doctors who think that all cases of diabetes are just like in the textbooks has made me wary of 'experts' in general, and doctors in particular. I am probably more inclined than I would have otherwise been to consider that other people's experiences in life might well be very different than anything I have experienced or read about, and those people deserve to be respected in their response to their experiences.
It has probably had more effect on me than all of the above, but those are the ones that first come to mind.
I was told very early that I would not live beyond 40 as well, so that affected me too. Like you I had no concern for retirement and am in the same situation you are. I was told things like, "It's not IF you will go blind, but WHEN." I also am overly cautious.
I wish I could laugh with joy at your incredible success... and I too walk without machines. Though did not realize "why" until you mentioned it... thank you!
I LOVE to stick it to "experts" (spitting sound). I know I have been effected by the disease, but cannot know quite how, not cleanly. I want to become aware, learn how to remove such subtle scars... Was a diabetic barely out of diapers (literally). I fear what it may have done to me that I cannot even name. The surface is easy, we all know these speeches far better than those who offer them death, dismemberment, gangrene, blindness, etc., etc.
But mentally, psychologically to me seems far more important, yet never touched. Take your pick but, blankets like depression, anxiety, etc. (insert your word of choice) do literally nothing when used and miss the target entirely.
How many of us, as members of this or other boards, people with some serious experience as diabetics... how many of us have witnessed our peers suffer wickedly, afraid, "quit", angry, in despair by a series of events, having done the very best they were capable (to whatever degree that is), and had them handed their own rear-end on a platter, again and again, and again. If the focus were psychology, our processing of information/events instead we would be better off!
Not terrified, not angry, not despondent, give us techniques both long and short term in order to cope with the fires, the sparks in front of us. Were that the real focus, the genuine approach, most would be far happier, or at least more contented.
What do you think?
Stuart, I don't really know any other Type 1's (except on this site) - lots of Type 2's, but that is a whole different set of issues. For me, a focus on psychology would not be much help. I think a focus on respect for the individual experience of a specific case of diabetes would be tremendously helpful (since there seems to be enormous variation in how treatments work in different bodies), as would having people doing the analysis of our numerical results who actually understand statistics, and don't just point to a couple of readings that fit whatever strategy is currently in vogue that they are trying to get the patient to commit to, despite the fact that other readings show that that strategy would be disastrous or even deadly. Sadly, a medical degree does not guarantee a scientific thought process or a decent grasp of statistical analysis.
But for some people, I suppose that a psychological approach would be helpful, and I am all in favor of whatever helps people.
In my case, when I realized that many career paths were ruled out by being a diabetic (airplane pilot, astronaut, etc), I considered suicide for an evening, sat down with my Bible and read large sections of it, and decided that despite the uncertain future, I was going to have to continue to live. Having decided that, I gave up on the concept of planning my life, since at any time, I could find myself blind, wheelchair-bound, and having to change everything to cope with those conditions or other complications. So I said "OK, God, one day at a time, and you'll have to tell me what you want me to do with that day - planning makes no sense now, and trusting you is the only thing that makes any sense to me." And then, since I had ruled out suicide, I knew that I had to go to school the next day, so I sat down and did my homework. And so far, that approach has worked reasonably well for me - God is good, and I have managed to earn a living and raise my son, and play my guitar for fun, and enjoy my walks and many other things. Diabetes has complicated my life, and sometimes has sent me down a different path in my career, but it is not who I am. Nobody's life goes as smoothly and as successfully as they want. I am relatively happy with the person I see in the mirror each morning, and with the opportunities of each day. My cousin, who late in her career became a diabetic teaching nurse, once asked me if I ever got depressed about being diabetic - I surprised her when I said no, this is a treatable condition (not perfectly, and not easily, but treatable none the less), so I consider myself lucky. There are enough medical problems that are much worse that I am grateful for having a treatable condition.
I take a religious approach to things as well and thank The Holy Spirit for ideas that come to me out of the blue that I am not actually thinking of at the time. It seems like it is advice from outside. Some people who are atheists would attribute it to themselves and call it common sense.
I feel there is a lot of good psychological perspective in what you said.
Everyone likes to think they are right, but I feel the great certitude comes when we see it works and we naturally want to share that, but others often do not want to even consider it.
So glad you didn't act on suicide as our bodies are the temple of the Holy Spirit and we have a role on this earth even if we may feel it isn't going as planned. I sure have been stymied with helping people who refuse to do the right thing even when they used to do the right thing. Some want the freedom to die a slow death. I have been trying for 4 years to help a man who has been diabetic 7 years and is 49 yet has gangrene and about 7 different diseases all because of smoking and drinking which he uses to counteract depression. It has scared me off my own wine making. We are on good terms, but in private I feel like crying because he does know what worked 4 years ago. If he had continued, he wouldn't be in the 6x darker legs situation where one doctor has said almost 2 years ago that they would be coming off within 2 years. Yet another person who did start on the therapy I was suggesting to both of them is already feeling better after 4 treatments. That's why I say success breeds success and people should pay attention. Try something long enough for it to make a difference and then it will solve something or even a few things that are all related.
All that you said was so accurate that I hope way more people come to read this discussion. Keeping a positive perspective is far better, even if on some days we feel overwhelmed. Like you, for me diabetes is not the center of the problems.
Thank you for taking part!!! Forgive me, I wish to understand? How did diabetes prevent/divert you re: career path? Were you in the astronaut program (8 O ??? If so.... wow!
And for the record, nor do I know anything of suicide, save as a ethical-moral issue. A discussion for another thread surely...
As you say we have different perspectives, experience... I lack your... "gratitude"? In truth, I wish I possessed it.
I am severely inhibited from that perspective in that "treatment" is at best solely maintenance, painful drudgery, damage control 101 and with severely dubious outcomes. If/when our zeal does not guarantee the outcome -shrug- many are taught far different lessons than gratitude... Now that said...
LOL, I love your idea of pure statistic analysis...
I'd pay money to see the types of comparisons I'd conceive (i.e. Does "tighter control" produce either far more serious lows or highs as the result of said "tighter", or provide greater numbers of either one, how off are CGM readings before being "actionable results" without mandatory confirmation w/ a meter, how much insulin is saved (or not) by using a pump, what do the current trends in CGM data analysis suggest (1 reading every 5 minutes equals 105,120 readings per meter per year... that's gotta provide some massive data to crunch in the smallest possible groups) etc., etc.
Love to get some statistics crunched... would allay many serious doubts, and concerns in our community on many levels I believe.
fook forward to chatting more... and thank you!
My half baked thoughts (such as they are) I contend if the fundamental aspects of what ALL of us were taught concerned primarily the way we considered/reacted to our information, data... we would be much safer & healthier as a community.
How many of us literally panic ever taken away from our "gizmos"? How many are severely anxious/depressed because our numbers are not some "ideal"? How many people do we know/meet who gave up because the data was a solely negative flow of information.
Whenever the approach does harm, time to reconsider the approach??? If a fundamental aspect of our education was the mental-psychology pieces, our boards would be far less necessary...