Living with Diabetes

When I was first diagnosed with type 2 diabetes I was told to go home, eat healthily and not to bother to test since it is a waste of time. Eating healthily was confusing since that phrase was about as clear as the legal terms "appropriate response" and "justifiable action" etc. I was given a couple of diet sheets.

It was months before I decided to sit down and check in which details the two diet sheets did not agree. After just two minutes I realised that one diet sheet was produced by the Hypertension Society and the other one was advice on cholesterol. I have never received specific dietary advice aimed at a type 2 diabetic.

Furthermore the lack of knowledge of the existence of blood sugar meters meant that I came home from the surgery without anything that I could do to help except "eat healthily?" and sit and wish this diabetes would heal up.

I wasted two years like this. Finally my blood sugars got higher and I was given Glimipiride and a meter. I never looked back.

In retrospect I think things would have gone better if I had been given clear advice about what makes blood sugar rise and how I might lower it. Also If I had been advised of the existence of monitors and told that I would have to buy my own I would have done so. Then maybe I would not have spent two years knowing nothing. At the time that things got worse I was admonished by my nurse saying that "what with all the feedback you've had I thought you would have made a better job of it" I was in the joyous position of showing her the one Post It I had been given showing one of the Hba1c readings. It took a bit of moaning to get that since she usually cuddled her screen in case I saw what was on it.

So that's my empowering suggestion. Clear explanations of what diabetes is and what can be done for the patient to get control of their sugar levels. Dietary advice aimed at diabetics and not at cholesterol or anything else come to that. The knowledge that a type 2 can buy and use a meter without the NHS police coming to get you and feedback in the form of a printout of any test results so that the patient can act on it and not blindly accept more pills.

And now an anecdote: The dispenser phoned and said that they had had a recall on some strips and could I give her the batch number of mine. I buy four times as many strips as the NHS supplies so it took a second to find hers. I read the number and she said it was OK but that there is a note on my file saying that I was not going to get strips anymore.

I said, "That's OK because I know where I can buy some" and she said, "I'll pretend I didn't hear that". Now I feel guilty (not really).

Like the Squire, I think dietary advice is the main thing missing. I have made a point of looking at the "plate" in practitioners rooms, that says things like "Bread, pasta, and rice." All these things raise my BG, even if it said wholemeal it would be better. If you want something deeper, you could empower people by informing them of the difference between the GI and GL something I live by these days. Good luck with whatever you do, and if you feel confident let us look over it

I liked your requirement to empower the young adults living with diabetes. You must understand that I am a type 2 which tends to claim the older person and the younger person might be a type 1

However, I feel strongly that there is a lack of helpful information out there for either type and a page, booklet, app etc. is badly needed enabling the patient to take some control of their own health.

My first experience after diagnosis was that Nanny said to take these pills and shut up. The pills proved harmful and I was not informed that other options were available. It has taken me five years to become wiser. Whatever you decide to do please try to reduce that timescale.

Hi Sierra, if you click on this link you will find an excellent starting point http://www.diabetes.co.uk/forum/threads/basic-information-for-newly-diagnosed-diabetics.17088/

Might have to ask the administrator for permission though
Good luck

Information about websites such as this. How to contact support groups so that you can speak to other diabetics. You feel so alone and when I was diagnosed this sort of website didn't exist. X

I think if I were in your postion I would perhaps go the route of a younger person diagnosed with Type 2. I was 31 when diagnosed and I have recently seen a thread by someone of the same age basically saying their life was now over! The advice that we type 2's seem to get, although it does vary, seems to be very bad. Its basically eat what you want, have a biscuit with your tea, or a piece of cake, just not too often. oh and lose weight. Personally I was given a diabetes magazine and told to come back in 3 months.........that was it! It wasn't until 2 years later my nurse was saying I'd have to go on insulin soon that I discovered this website and learned about the role that carbs have in controlling Blood sugars.

I think it would nice to get some info on how carbs affect us, and how testing helps. So maybe a small credit card size quick guide, that folds open, of what healthy BG numbers are, when to test what your eating so you know what to make of the results. Something like that.