Hello again
@bujanin,
Somehow I missed your post towards the end of last year when you told us you had adjusted your alert rrom low 4s to 5.5 and were doing so much better in reducing your hypos. That was great news then. Is that still working out well for you?
As I recall from your early postings last September you have been T1 for a very long time and in very recent years you had allowed the pendulum to swing too far towards keeping yourself routinely very low - well that might be more accurately described as dangerously low! Anyway, that would reconcile with your comment above about "working on fears of very high sugars". Very well done on your part to continue with the restart you made last Autumn and now further well done in finding a clinical psychologist to hopefully provide further insight into yourself.
I can relate to your fears about high sugars and the damage they can cause to us. My brother-in-law, some 25 yrs ago, found himself as a door to door salesman promoting the virtues of disability aids. At that time I was loosely aware of a lot of D in my cousins and their kin from my mother's extensive family; but none of this was "close to home", so was pretty much out of sight. But I do remember him remarking how he'd visit a customer and make a sale of something relatively small, then find himself back a few months later making a bigger sale and over a couple of years had progressed from selling a minor aid to a full array of high cost things like an electric hospital style bed and "state of the art" electric wheel chairs - as a series of amputations caused by their D was overwhelming their lives. My brother-in-law changed his job, heavily bothered by all of this. Then 15 years ago this scenario came very close to home.
My older brother, T2, had to abandon his life and home in Kenya of over 30 years because of sepsis in a foot. He and his wife arrived as emergency evacuees into Heathrow, I collected them and brought them home. I had converted a downstairs room to a bedroom for him because his mobility was almost nil and he was admitted to Stoke Mandeville hospital 5 days later. After 3 months in Hospital his left leg was amputated above the knee, I had been visiting him daily and I accompanied him to the Theatre for that op. By now sepsis had spread to his other leg and a year later he surrendered that, just below the knee. His world had changed from a successful and carefree life in Africa to being confined to a wheelchair or his bed with endless phantom pain, huge loss of self-esteem, unwillingness to fully engage with any of us (his own children and grand children, nor his own siblings) and generally was in a very bad place. Now his T2 D was well and truly in front of me and had become a big part of my life - but not then part of my fears.
In late 2019, out of nowhere, pancreatic cancer found me and in Feb '02 I surrendered my panc'y. Suddenly all my suppressed fears about my late brother's double amputation and extensive other ailments were potentially my future. I was T3c, wholly insulin dependent and during '20 and through to '22 needing the medical support of Upper GI Surgeons, an Endo, a Gastroenterologist, a Urologist, a decent Dietician and endless Specialist appointments dictating my daily diary. Deep down I knew my fears were illogical, the medical circumstances were too different. He'd neglected his health, even after his T2 diagnosis; I'd been pretty sensible about my health. He'd ignored a minor knock on his ankle which ultimately led to those amputations; I was not going to follow in his footsteps (nor his wheelchair tracks!). Yet, that fear of his D outcome still resonates with me - but is diminishing.
My research so far includes:
I've searched for reading material to help me find an optimum path for looking after myself and have got a lot of help from the 2 books mentioned by
@Bruce Stephens: "Think like a Pancreas" and "Type 1 Diabetes in Children Adolescents and Young People".
I'm currently reading "The Glucose Goddess" and despite an initial resistance to someone promoting themselves as a Goddess, I'm still reading, learning and taking note; her Tips, or Hacks as she calls them, are a bit intrusive to our current living arrangements. But I may yet adopt some of these once I've fully read the book.
I did a DAFNE course in Nov '22, which was useful mainly for meeting 7 other T1s and sharing experiences. Then the DAFNE syllabus did not include anything to do with CGM and this was blatantly not touched upon - so I think a huge opportunity was lost in helping us students to make any (never mind best) use of tech; but DAFNE had plenty of revision on basics that I was already (after less than 3 yrs) forgetting.
I've also done a 20 x 1 hr counselling course, which was useful in keeping me relaxed and open minded; my Counsellor knew nothing whatsoever about D, so part of my therapy was finding the right vocabulary to explain what my daily D issues were, as well as articulating my illogical wider concerns.
I follow up links and articles from the D UK Balance magazine, from Diatribe articles, from the Desang Diabetes Media Solutions monthly News Digests (I can send you a link to that free digital journal, if you can't find it).
I also do some Google searching - but decreasingly so and now always include UK in the search description. It's not that I think UK is the only or best source of information, but there is a lot of rubbish out there and in the end I need to know what UK medical solutions and advice exists; if I can't get that help through NHS supported organisations I'm grasping at straws or dreaming about something unobtainable.
I'm also full of good intentions to listen to D related podcasts. In practice there aren't enough hours in the day.
But above all I get most support from this Forum. I appreciate the breadth of advice, views and opinions. Very little is "thrust" onto me, or if it is I'm too thick-skinned to be aware of that. So I pick up a host of tips and tricks from member's here, along with the background 'wash' that we all have this common bond of the hassle of D and for some of us the concerns and fears about our best D management.
I suspect I have now said a lot and yet not added too much to what others have just said. Except, perhaps, I do understand why you've raised this thread. Once again I hope your changes last Autumn are still helping your D and that your personal domestic challenge is, if not improving, at least getting clearer. Do keep in touch.
