What do you wish you’d been told?

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I wish i'd been told (or shown) that the needles i'd be using wouldn't be like the (in my head) knitting needle sized ones the docs used to give injections or to take blood
 
everydayupsanddowns said:
Here are mine

  1. Basal testing - how much getting basal insulin adjusted properly helps all the other doses to work, and just how much chaos can be caused by basal being a bit too high or too low.
  2. Food variation - just because something is said to be ‘slow release’ doesn’t mean it will be for you. The gut biome and your unique metabolism mean you really have to check things for yourself.
  3. Perfection isn’t possible. You can go a long way towards sorting out BG wobbliness, and you can learn a lot, but you can’t get a competely flat set of results - folks without diabetes get BG wobbles too! Diabetes changes the rules often and is a fickle so and so.
  4. Diabetes can’t always come first. Sometimes its enough to do just enough. Start where you are. Use what you have. Do what you can.
  5. Make connections - either virtually or face-to-face. Diabetes is a lonely road on your own, and you will learn more and have more resilience if you share the journey with others.
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Can’t comment on 1 but 2, 3 & 4 are very true
 
I agree with loads of these! Gonna put one slightly different - what i wish i HADN'T been told - "There will be a cure in 10 years". 25 years in now and no cure in sight - it upsets me to know newly diagnosed T1s are still being told this. As a 6/7 year old it immediately reduced my perception of how serious it was and how important it was to actually look after myself and I struggled hugely through my early years/teens as a result!
 
I wish I’d been told that you can do everything right - count your carbs, right amount of insulin - and still you can get blood sugar results out of range through no fault of your own. I spent a lot of time early on obsessively worrying that I’d made a mistake. This wasn’t helped by some HCPs implying an out of range number was, indeed, ‘my fault’ somehow. I found that very upsetting.

I also wish I’d been told more about the honeymoon period and how it can cause hypos and why.

I echo the comment above about NOT wanting to be told there’d be a cure in 5 years. It’s not encouraging or cheering, it’s depressing to watch 5, then 10, then 15 years go by without a cure. It really got me down in the early years.
 
Sprogladite said:
I agree with loads of these! Gonna put one slightly different - what i wish i HADN'T been told - "There will be a cure in 10 years". 25 years in now and no cure in sight - it upsets me to know newly diagnosed T1s are still being told this. As a 6/7 year old it immediately reduced my perception of how serious it was and how important it was to actually look after myself and I struggled hugely through my early years/teens as a result!
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So who tells newly diagnosed about cure, only ever seen false hopes in press not from diabetes teams.
 
nonethewiser said:
So who tells newly diagnosed about cure, only ever seen false hopes in press not from diabetes teams.
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In my case, this is what my consultant told me when I was diagnosed - suspect in an attempt to make me/my parents feel better! He was a lovely man but I wish he had never said it.
 
nonethewiser said:
So who tells newly diagnosed about cure, only ever seen false hopes in press not from diabetes teams.
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I think the press are quite bad at giving false hope on lots of medical stories, when they are years a way if at all universal available.
 
Sprogladite said:
In my case, this is what my consultant told me when I was diagnosed - suspect in an attempt to make me/my parents feel better! He was a lovely man but I wish he had never said it.
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You were lucky. My cousin’s daughter was dx aged 9 and the specialist said it was probably temporary!😱 That was 10 years ago - she’s still diabetic (of course).
 
Bloden said:
You were lucky. My cousin’s daughter was dx aged 9 and the specialist said it was probably temporary!😱 That was 10 years ago - she’s still diabetic (of course).
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Omg
 
Bloden said:
You were lucky. My cousin’s daughter was dx aged 9 and the specialist said it was probably temporary!😱 That was 10 years ago - she’s still diabetic (of course).
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😱😱😱 “Specialist”??!! I might expect that sort of comment (sadly) from a less-than-clued-up GP, but a specialist? What were they a specialist in then, skin complaints?!
 
Kaylz said:
That a plummet in hba1c can cause more damage than good and it should be brought down gradually xx
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was going to write the same. Only just discovered this through forum post here! Got my first (2nd) HbA1c results next week and now panicking. Why tell us to lose 15kg as soon as possible to attempt remission when the consequences of reducing A1c that quickly are so bad? I wish Diabetes was straight forward, one size fits all treatment. But it just isn't.
Still totally lost on many fronts.
 
Neens said:
was going to write the same. Only just discovered this through forum post here! Got my first (2nd) HbA1c results next week and now panicking. Why tell us to lose 15kg as soon as possible to attempt remission when the consequences of reducing A1c that quickly are so bad? I wish Diabetes was straight forward, one size fits all treatment. But it just isn't.
Still totally lost on many fronts.
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Well I wasn't included in the lose weight category and advice generally differs for Type 1 to Type 2, my plummet was insulin induced having been put on set units so would be slightly different to your situation xx
 
Sprogladite said:
I agree with loads of these! Gonna put one slightly different - what i wish i HADN'T been told - "There will be a cure in 10 years". 25 years in now and no cure in sight - it upsets me to know newly diagnosed T1s are still being told this. As a 6/7 year old it immediately reduced my perception of how serious it was and how important it was to actually look after myself and I struggled hugely through my early years/teens as a result!
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That‘s a real biggie @Sprogladite :(
 
Your Doctor was right - you don't have diabetes!
 
Neens said:
was going to write the same. Only just discovered this through forum post here! Got my first (2nd) HbA1c results next week and now panicking. Why tell us to lose 15kg as soon as possible to attempt remission when the consequences of reducing A1c that quickly are so bad? I wish Diabetes was straight forward, one size fits all treatment. But it just isn't.
Still totally lost on many fronts.
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This is what Prof Roy Taylor, I guess the main recent source of the 15kg weight loss rec, has to say:

It is most important to consider the individual’s microvascular complications before embarking upon major dietary change. If there is no retinopathy, or only early changes (scattered micro aneurysms with few blot haemorrhages) then no additional precaution is required other than an annual screening.

However, if moderate or more severe retinopathy is present then arrangements should be made to re-screen the eyes within six months of achieving a substantial improvement in blood glucose control. The reason for this is that the sudden normalisation (reduction) in retinal blood flow associated with the return of normal blood glucose control can disadvantage areas of the retina in areas of marginal circulation with resulting deterioration in retinopathy.

This effect is entirely restricted to individuals with pre-existing moderate or worse retinopathy. (Arun CS, Pandit R, Taylor R. Diabetologia 2004; 47:1380-84. PMID: 15309288).

For those individuals who achieve reversal of their type 2 diabetes, retinal screening should be continued long term pending further data upon this matter.


According to my eye guy, the retinopathy deterioriation would usually just be temporary, FWIW.
 
Kaylz said:
Well I wasn't included in the lose weight category and advice generally differs for Type 1 to Type 2, my plummet was insulin induced having been put on set units so would be slightly different to your situation xx
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Sorry to hear that. I believe my T2 was post operative/physical trauma but also may be genetic. Was overweight at diagnosis but not 15kg+ so can't lose that much anyway. This is the magic weight loss line for possible remission which is what many newly diagnosed T2 hope for. I have since learnt that despite striving to be in that 5% it may not stop future diabetes or complications.

Think there is so much we all wish we had been told. I understand why we can't have instant access to the gateway education but that would be advantageous in the first couple of months. I have a week to go for mine.

Thanks for clarifying your situation @Kaylz.
 
Thanks @eddyedson I continue to learn.
 
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