Diabetes and…

[s'nic]

@Proud to be erratic @snowball12 @AJLang @Cheyne @DianeD @eggyg @MarkyMark1 @Lucyr
My heart goes out to you guys, you have to deal with so much. You deserve the health service to actually give proper joined up care, and are just not receiving that.

@everydayupsanddowns
Would it be worth having a subforum specifically where "Diabetes plus ..." folk could vent / ask advice or seek others with similar problems (even if not identical ailments)?

Would such a subforum be useful to you guys? Any thoughts anyone?

 

[MarkyMark1]

Hello folks
I think that’d be really useful to have a sub forum like that, you can count me in!

 

[helli]

Thankfully, I only have one chronic condition - insulin. But I empathise with everyone who has commented on this thread every time I visit the doc about a non chronic condition. Why do I always have to remind the doc to check if any medication they prescribe will affect my diabetes? I often feel I am educating them when they give me a jab or manipulate a muscle problem. In the past, I have commented about a specialist in another area asking me how many tablets on insulin I take.

 

[Docb]

There is one group (as you might have noticed) that I am particularly attached to when it comes to "Diabetes and....", and that group, to avoid accusations of ageism, I tend to refer to as the wrinklys. This is the group of people for whom ageing is taking a toll on systems generally and, providing you are not getting direct symptoms, elevated blood glucose levels are likely to be the least of your worries.

 

[Proud to be erratic]

I don't feel strongly about the idea of having a subforum for this topic. If it has legs it will continue to be on the front page of this part of the forum and people will naturally find it. Perhaps we should see where this initial burst of enthusiasm goes and whether there are different topics that naturally emerge to justify a subforum?

 

[Cheyne]

Hi,
What an enlightening read this thread is. I knew I was not alone with my issues, but to actually read of some of your own accounts, puts mine into perspective for me.
As I see it the problem is not so much as aging but more a problem associated with lack of medical dedication and help because we are older. That is to say why would they spend time and resources when life expectancy is a lot less for us than others, that is the distinct feeling I'm left with. Trouble is they miss calculate, I love wasting their time and resorces because I have the time to keep being a pain in the neck to them. Trying to accumulate as many black marks as I can and get back some of my hard paid tax dollars that is the health system.
It is the sheer bloody mindedness that has kept me going for so long, something that seems endemic in the older generations learned through the hard times of old.
My journey is reaching the end of the road. I have had the determination of it all being in my head, depression and over reactive nerves. I have even out lived their predictions of how long they gave me to live. I feel reborn, 39 going on 72 without their medications. Just one problem though, without some of these meds I'm not sure I'll see 40, again!
I concider myself lucky as I can walk, talk and cause trouble when I feel like it. My outward appearance apparently is looking younger than my real age should suggest, so logically I'm in good health. I even had one Dr comment I was always smiling when I saw him, do I have to look like I'm at deaths door to elicit help!
I have been given the answer to the high Bg readings I still get, I don't know why I hadn't thought of it myself, stop taking the Bg readings. Simple what a wonderful diabetic nurse she is! I feel this should be entered into international medical journals, it is ground breaking for sure. So many health issues could be solved this way, the world needs to know. I guess in laymans terms I should be putting my head in the sand.
I prefer to be denoted as old or aged, even mature, but not wrinklies, I don't have enough wrinkles to join that group, yet. It is what it is and has taken me a life time to obtain the title, one I will only relinquish at death.
Cheers

 

[everydayupsanddowns]

One of the interesting things I’ve observed over the years of my forum interaction is how much I have to learn aboit my own experiences from others living with quite a different set of challenges. It’s one of the reasons that I’m really glad that, for example, those who initially set up the forum decided not to try to split up sections by diabetes type - and grouped us all together in the same big ‘pot’.

While there are certainly different challenges and lots of nuance between treating different subtypes of diabetes, and there are those who would argue passionately that they shouldn’t even be called the same thing, for me the bigger thing is that we are all aiming to improve our own glucose management and long-term outcomes. And while the mechanics and specifics of aiming for that can be quite different, there’s a lot of shared ground in the intention, and someone relating their own experiences of the particular challenges (or opportunities) they face can sometimes shed an interesting light on my own very different situation.

It’s an interesting suggestion though, and one that the mods m hosts, and staff do consider from time to time, including very recently!

 

[eggyg]

I’m not sure about a sub group. I was hesitant to write a post on this thread! I’m not defined by my health issues. I live a full and satisfying life. I’m active, I look younger then I actually am and (almost) always have a smile on my face. I suppose I could have just curled up and felt sorry for myself but I refused to do that. In my case if I hadn’t had the two lots of major surgery I probably wouldn’t be here to read this thread let alone write a post. So, I’ll put up with my “extras” and deal with them as the alternative isn’t worth thinking about, and hope that one day the NHS ( sooner rather than later) will be fixed and we’ll all get the treatment we all thoroughly deserve. Much love and hugs to everyone on this thread.

 

[Docb]

Hi @Cheyne - a brilliant exposition the sort of perspective on diabetes that one might come to when in the 70,80,90 age bracket.

I was trying to find a word to sum up this age bracket. Aged, old, mature all have connotations of one sort or another and the best I could come up with was wrinkly because Barry Cryer used to use it on "I'm sorry I haven't a clue " to describe himself and others who were physically ageing but still had their wits about them. Like you I am not physically wrinkly so if you can come up with a better word then I'll be using it.

 

[Sarahp]

Thank you @everydayupsanddowns for posting this, currently living with over 30 complex conditions including complications from my diabetes and post eating disorder, have 8 different gut conditions and it’s breaking me at times as it makes it very hard to control my diabetes and many of the standard type 2 treatments that would help normally aren’t available to me now.

Keep fighting everyone, knowledge is power and self advocacy is key when you are living with a complex medical situation.

 

[Wendal]

I’m not sure about a sub group. I was hesitant to write a post on this thread! I’m not defined by my health issues. I live a full and satisfying life. I’m active, I look younger then I actually am and (almost) always have a smile on my face. I suppose I could have just curled up and felt sorry for myself but I refused to do that. In my case if I hadn’t had the two lots of major surgery I probably wouldn’t be here to read this thread let alone write a post. So, I’ll put up with my “extras” and deal with them as the alternative isn’t worth thinking about, and hope that one day the NHS ( sooner rather than later) will be fixed and we’ll all get the treatment we all thoroughly deserve. Much love and hugs to everyone on this thread.

Really good thread and have to say I am in complete agreement with everyday regarding learning from others.Despite us all having very individual situations and experiences and eggy re.trying to live as normal a life as possible and not being defined by any condition I may or may not have.
I have been wary on occasions about posting how generally speaking I take any medical diagnosis in my stride and just cope with as best I can.I know that I am very lucky in that I do not face many of the challenges that can weigh heavily on others for eg I don’t get anxious or have any mental health concerns etc.
I do not want to come across as someone who dismisses others challenges simply as they do not affect me directly and I do not seek to say that we can all live a normal life but I do believe for many of us a “ new normal” is possible but it is an individual choice about how we may or may not want to proceed.
A bit like the Covid experience some took the opportunity to refocus and re define their lives whilst others revert back to their pre pandemic life some happily and some less so.
Of course any diagnosis of diabetes and/ or other conditions will impact on our lives and can overwhelm us at times or all of the time but personally I try and just live my best life and I do not get sad about the small challenges I face and just want to provide hope to some particularly on the early stages post diagnosis that many can carry on with their pre diabetic life with a few modifications.
ATB

 

[Anxious 63]

Well said you should be proud of yourself Wendal all power to you

 

[Proud to be erratic]

I was gobsmacked when one GP (a guy) actually asked me what I did all day. It left me feeling like he thought maybe I was just being lazy 😡

@s'nic, I can't defend that totally insensitive question. But could it be possible that the GP was, in a extremely clumsy way, trying to get some insight into your plight and your medical condition? If you had replied "I just constantly fall asleep" or whatever was appropriate, could that have led towards a revised or better diagnosis?

I mention this because your post triggered a silent conversation with myself : my wife has been hit by something (absolutely no idea what) that has resulted in her waking late, falling asleep again, finally getting dressed and falling asleep again downstairs and generally completely lost all of her mojo; all day! We have really struggled to get a GP app't, even by phone, just to start a review of the one medication she sometimes needs; or for a blood test (not been done for 2+ years) to check vitamin levels etc. There didn't seem to be an opening to push against to get started. Partly triggered by your post I'd been rehearsing in my mind how to explain my wife's plight to even a Receptionist, ignoring the constantly overflowing e-consults that get declined and deleted daily, that my wife needed medical help NOW. And if no-one would even start an initial triage process, how could we make any progress when time (nearly 2 weeks) wasn't doing that on its own. Hasty checks at our on-line A&E availability left us concluding that spending a day there was also less than useful. I suppose we have now allowed our poor expectations to deter us from even trying A&E!

[Afternote, she got a blood test completed on Friday and promised results by next Friday; so just muddle through another week and maybe then someone might allow a GP appointment 3 weeks later. Our expectations have been managed extremely well to be "minimal, very slowly".]

 

[Flower]

The lack of holistic & joined up treatment for chronic conditions & any overlap with other illnesses/conditions seems to be lacking and is something I always hope to find but never have. I've found a lack of overview just within one speciality looking after one problem, it doesn't help to get my expectations & managing strategies in place`.

With my legs and all the fractures and joint collapse I've had from Charcot foot I've been told by the specialist Doctors during a time both my legs were in casts that they would only deal with one leg at a time. I was quite taken a back at the response. I've got 2 legs with the same neuropathic problems but they were treated as indidual 'items'. What happens to the one in terms of fractures, joint collapse, being able to weight bear or not has a direct impact on what happens to the other but they weren't dealt with like that.

Great subject @everydayupsanddowns

 

[Anxious 63]

The lack of holistic & joined up treatment for chronic conditions & any overlap with other illnesses/conditions seems to be lacking and is something I always hope to find but never have. I've found a lack of overview just within one speciality looking after one problem, it doesn't help to get my expectations & managing strategies in place`.

With my legs and all the fractures and joint collapse I've had from Charcot foot I've been told by the specialist Doctors during a time both my legs were in casts that they would only deal with one leg at a time. I was quite taken a back at the response. I've got 2 legs with the same neuropathic problems but they were treated as indidual 'items'. What happens to the one in terms of fractures, joint collapse, being able to weight bear or not has a direct impact on what happens to the other but they weren't dealt with like that.

Great subject @everydayupsanddowns[/
[/QUOTE]

 

[Anxious 63]

That is absolute disgraceful ive never heard of so much rubbish in all my days

 

[Proud to be erratic]

I presume, @Anxious 63 you mean disgraceful in the sense of unacceptably poor treatment - rather than the suggestion is disgraceful and rubbish Alas I could speak at length about the lack of a holistic approach.

 

[s'nic]

But could it be possible that the GP was, in a extremely clumsy way, trying to get some insight into your plight and your medical condition?

This did occur to me, but the question just came totally out of the blue, it kinda left me picking my jaw off the floor and trying to form any kind of answer.
This week on 2 days I spent a short amount of time pulling a few items out of the attic. after I checked through them, put them in a couple of boxes. On a 3rd day I loaded the car and took the items to a re-use shop. Just this relatively short time spent meant I did too much this week. As a result I need a few days resting just to ensure I don't head into my 'crash and burn' scenario.
When hit with a question out of the blue this kind of example does not spring to mind and I generally answer such random questions poorly.

Your strategy of consideration of scenarios and wider possibilities prior to consultations is so much better, I need to improve my pre-consultation thinking.
I sincerely hope the tests done will aid in diagnosis and treatment for your wife. Hopefully she will get help soon.

 

[everydayupsanddowns]

This did occur to me, but the question just came totally out of the blue, it kinda left me picking my jaw off the floor and trying to form any kind of answer.

I’ve had that in the presence of HCPs too (and occasionally other people making extraordinarily ill-judged statements)

Then I inevitably spend days and days ruminating over quite what I should have said in response!

 

[Lucyr]

I don't think the average GP even comprehends how debilitated this leaves us, or how we have to choose how to spend our energy. Do we cook dinner, or vacuum the sitting room? 🙄

Yeah, I don’t find anyone else understands it really. Cooking dinner or vacuuming the living room? It would be a very good day if I had enough energy to choose one of those. It’s so weird to think I used to go to work in the office all day, come home and cook dinner and do some jobs or go out to an evening activity. Find people just think I’m better now I’m back at work, but I go to bed 5 times during the day just to get through the basics, and often not even that. I wouldn’t cook dinner if I’ve had a shower that morning for example, I’d be on a ready meal or some snacks.