What do you wish you’d been told?

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everydayupsanddowns

everydayupsanddowns

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If you’ve been living with diabetes for a while (or even if you haven’t!) is there one thing... one piece of information, or tip, or bit of advice, strategy or tactic which you’ve since discovered that you wish you had known from the beginning?

There may be more than one, of course. In which case give us your ‘top five’ 🙂
 
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.
 
Here are mine
1. That there is a great deal you can do to help yourself.
2. That type 2 is not automatically progressive and remission is possible in some circumstances
3. It is not my fault that I have this problem
4. There are several solutions, not 'one size fits all' and you are the key to working out what is best for you
5. Accept that the lifestyle changes are for the long term, and enjoy the sometimes unexpected benefits.
 
That a plummet in hba1c can cause more damage than good and it should be brought down gradually xx
 
1) Hypo awareness can be lost by too many hypos (I still haven't been told this by a medical professional)
2) That if I have an unplanned pregnancy my child could be born healthy, and not the unrepeatable nonsense I was told - It is too graphic/upsetting to share. But a medical professional thought it was okay for 16 year old, 1 month after diagnosis
 
PhoebeC said:
1) Hypo awareness can be lost by too many hypos (I still haven't been told this by a medical professional)
2) That if I have an unplanned pregnancy my child could be born healthy, and not the unrepeatable nonsense I was told - It is too graphic/upsetting to share. But a medical professional thought it was okay for 16 year old, 1 month after diagnosis
Click to expand...
I have read a number of times people saying about the way they have been told having an unplanned pregnancy and the worse case scenario.
 
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.
Click to expand...

Perfect 5.

Add on, on diagnosis all was dull & gloom, no positivity from dr nurses no peer support to talk of, general consensus was shorter life with troubled times ahead.

Fast forward 40 years, still here diabetes better controlled than ever, yeah few struggles along way but life is good, so more positivity would have been good.

Have to say, this isnt attitude now from diabetes teams, talking in past tense as per above.
 
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Would have been good to have been told up front that losing weight could turn my T2D around, instead of "Try not to lose too much weight".

Also, basically anything about my PAD/claudication, apart from "Ditch the ciggies", tho I acknowledge that was the most important thing.
 
everydayupsanddowns said:
If you’ve been living with diabetes for a while (or even if you haven’t!) is there one thing... one piece of information, or tip, or bit of advice, strategy or tactic which you’ve since discovered that you wish you had known from the beginning?

There may be more than one, of course. In which case give us your ‘top five’ 🙂
Click to expand...
Always do an air test before you inject. Only found this out in a passing conversation. More often than not, the insulin in the pen isn't always fully primed and if you don't do an air test and get all the insulin ready you can be a few units short at each pen use. This is the most important diabetes management thing I've never been told by anyone ever.
 
1. The sun will shine every time you need pupil dilation drops - always take sunglasses whatever the weather forecast
2. Sometimes things will go haywire for no apparent reason.
3. You are in charge and you are the one living with diabetes. Find a way to live with it and roll with it over the years.
4. Complications can devastate your life and change things for ever. Do all you can to give yourself the best chance.
5. Meet and talk to others living with diabetes, this really is the best medicine (obvs insulin is No.1 but peer support is right up there). I wish this advice had been around and doable in the 1970's, I had a tough time in the wilderness years until I found here.
 
I wish I had been told
1. That I would have to train various dns over the years in my diabetes .
2. That I would have many disagreements with dns and dieticians on my diet.
3. When I was put on insulin, that most professionals would believe it was because I was a bad diabetic.
4. That I would get sick of being asked why I am not on Metformin.
5. Anything about basal testing and how to adjust my Novorapid, I have you guy here to Thank for guiding me through that difficult time.
 
Please can I have another 5!!
1. Metformin can have anti-social side effects
2. Your finger needs to double up as a pin cushion
3. Cauliflower will become a significant part of your life
4. Exercise is actually enjoyable
5. The best knowledge and support is unlikely to be from your GP.
 
Great stuff everyone. Anyone going to try to top @Toucan’s TEN top tips?! 😛
 
Flower said:
1. The sun will shine every time you need pupil dilation drops - always take sunglasses whatever the weather forecast
2. Sometimes things will go haywire for no apparent reason.
3. You are in charge and you are the one living with diabetes. Find a way to live with it and roll with it over the years.
4. Complications can devastate your life and change things for ever. Do all you can to give yourself the best chance.
5. Meet and talk to others living with diabetes, this really is the best medicine (obvs insulin is No.1 but peer support is right up there). I wish this advice had been around and doable in the 1970's, I had a tough time in the wilderness years until I found here.
Click to expand...
Flower, if it was possible i'd of given you 2 likes! very good!
 
Hmmm, to be honest, I don’t think, at least not yet, that there is anything I wish I’d been told. Luckily, I read up about diabetes on the Internet, the same day I was diagnosed and consequently found this website which helped me obtain a lot of good solid information from it’s wonderful members, so I had an excellent starting point, thank goodness.

Also, having done the above, I purchased a bg monitor straightaway, so that when I then had my first appointment to see the DN and she said not to bother testing, I’d already got it and ignored her advice. I’m hoping that in time, I can change her mind about her “advice”, so that other people get monitors ASAP and get a better understanding of their diagnosis and how to get the most out of helping themselves be healthier to stave off unwanted “complications“ in the future. Prevention is better than cure.
 
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