How does your diabetes affect you? (and CFS update)

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Lucyr

Lucyr

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Relationship to Diabetes
Type 1
I had an assessment today and was diagnosed with chronic fatigue syndrome. (Thats the first part of my news, as I know I’ve mentioned it in a few places before).

One of the questions asked in the appointment was “how does your diabetes affect you”. I guess he was looking for whether I’d say “high blood sugars make me more tired” or something but I was a bit lost and couldn’t think what to say. In the end I said that my time in range has more than doubled recently, but that I didn’t feel any different physically. I couldn’t really think back to not having diabetes to think of how it affected me! Perhaps given more time to think I’d have said that it adds a lot more decisions to my day or something.

How would you have answered the questions “how does diabetes affect you”?
 
It's a damned PITA - cos every time I've thought I've got it cracked now - it proves me wrong. Again. And again. And again. Plus they suddenly chuck my consultant's appointment to one of his housemen - a lady - who I'd never met before in my life nor she, me who suddenly decided I ought to reduce my evening meal I:C ratio by only considering the late evening results for the last fortnight-ish on Libreview and not open to discussion or me bothering to say - well check my BG results instead then, cos you ought to consider those since the L is so unreliable at lower levels, because I was so taken aback!

Then expressed surprise that I seemed reluctant to change the ratio 'on my PDM' - no I was totally stunned actually. WTF????? After - of course! - I realised for some reason she must seem to think I used an Omnipod. Plus I actually wanted to discuss whether to try downloading the new Librelink to the phone I have now - the one before that was so old, it couldn't even if I'd wanted to - but RT CGM has defo gotta be worth a try however this young Dr immediately informed me she had no clue whatsoever about that so you'll have to ask Louise, not me - and not today because she isn't in.

Very much less than impressed!!!

Anyway - I've downloaded the App although it'll be practically a fortnight before I need another sensor, so we'll see, won't we!

Oh and PS - she said in the letter she sent to the GP of which I received a copy that I was to be reviewed in 4 months, though she never mentioned same whilst I was there. Husband was with me and confirms she didn't say anything about that.
 
I'm with @trophywench - it's a royal PITA. I'm often furious with my diabetes for the limitations it causes me, especially as far as exercise goes. Yes, I know, I can do anything I want exercise-wise (apparently) - but the pay-off is a rubbish TIR. I limit the variables, I take notes, I use TBRs...fffleurrrrgh...but the results are never consistent. It won't stop me from exercising, but it drives me nuts! o_O 😛
 
The thing that drives me nuts is when the technology breaks, like it did this morning (libre2 Bluetooth failed, miaomiao wouldn't talk to it either), which meant I had to cancel a long ride (and I took the day off just for that purpose). On the plus side, once I'd got everything sorted out and working correctly, I did manage to get out for a couple of hours.

Aside from stuff like that, it's fine. It can be a challenge (working out how to do the exercise stuff for example), but I like challenges so it keeps me busy. I have no desire to compete with other people (in e.g. sport) all of my competitions are with myself, so being able to do something and (try to!) get blood sugar sorted out while doing it is part of the challenge. Life would almost certainly be easier without it, but I never think "what if" as it's not going to happen and I equally don't remember what life was like before.
 
Generally i just get on with it OK, but there are times when it really weighs me down with the relentlessness of it all, or fills me with frustration and annoyance because something that was supposed to work (and that worked OK last week / last month / whatever) just creates random numbers for no apparent reason.

So for me I think it’s mostly frustration.
 
Lack of spontaneity frustrates me. I would love to just get up and go. But no, you’ve to make sure you’ve got all your kit. Keep checking your BGs ( to be fair it’s so much easier now I don’t even have to scan) and trying to pre bolus for a meal you don’t know when it’ll arrive and what size it’ll be. Thinking about how long you should walk for especially if it’s hot. Making sure you have plenty of snacks and hypo remedies. You need to be a mathematician, meteorologist and pack horse! I would love to go for a nice long walk without a rucksack/bum bag.
 
How does diabetes affect me?
It doesn’t stop me doing anything. It does not affect my spontaneity.
It is just another thing on my mind all the time and when work, family and other health issues are going on, I could really do with a diabetes break.
I often compare it to looking after a toddler. But at least you can give a toddler to their grandparents and take a break. Plus the toddler grows up.
 
My particular 'toddler' did indeed grow up but the little bugger refuses to move out and I can assure you at least 500% it ain't my cookery or cleaning!
 
It affects me by always having to plan everything , tomorrow I am going to Tiree for 10 days. I have set alarms re my equipment and a back up and back up. Having been type 1 for two years ( at age 64), and having been previously healthy and on no medication it is a lot to get used to.
However, so far it is mostly well controlled
 
Lucyr said:
I had an assessment today and was diagnosed with chronic fatigue syndrome. (Thats the first part of my news, as I know I’ve mentioned it in a few places before).

One of the questions asked in the appointment was “how does your diabetes affect you”. I guess he was looking for whether I’d say “high blood sugars make me more tired” or something but I was a bit lost and couldn’t think what to say. In the end I said that my time in range has more than doubled recently, but that I didn’t feel any different physically. I couldn’t really think back to not having diabetes to think of how it affected me! Perhaps given more time to think I’d have said that it adds a lot more decisions to my day or something.

How would you have answered the questions “how does diabetes affect you”?
Click to expand...
Hope your cfs diagnosis brings you help and answers, mine was used as reason to stop treatment and ground life to a standstill , since then revealed multiple complications other than the tiredness and frequent bathroom trips and pancreatitis. Hope things improve soon.
 
Sarahp said:
Hope your cfs diagnosis brings you help and answers, mine was used as reason to stop treatment and ground life to a standstill , since then revealed multiple complications other than the tiredness and frequent bathroom trips and pancreatitis. Hope things improve soon.
Click to expand...
What kind of treatment stopped? I’m going on a cfs management programme in a months time but I don’t really know what it involves
 
Lucyr said:
What kind of treatment stopped? I’m going on a cfs management programme in a months time but I don’t really know what it involves
Click to expand...
All forms of pain relief, led me to loosing my job and discovering the complications as it was masking pheripheral neuropathy and other symptoms/issues .
Sounds very progressive, we have a course but it’s for all pain management patients, if you have a history of depression then your not allowed to go even though it deals with things like pacing.
 
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