An Email I Was Writing

[George895]

I just started writing an email to my HIV consultant and the dietitian at The Harrison Wing at St Thomas's Hospital and this is what I wrote:

Now the weather has cooled down my sugar levels haven't been high and this is the kind of thing that needs to be taken in to consideration when giving out advice about managing diabetes.

How outside influences have an impact on our sugar levels like stress, the weather and how we live as individuals instead of this one size fits all attitude that we should be exercising 30 minutes everyday even in hot weather. Against my better judgement I tried it and it did more damage than good, I got so dehydrated despite drinking plenty of water I ended up feeling sick and nearly passed out on one occasion.

Bu then again I wouldn't have put myself through if it wasn't for the guilt because the so called experts (and no disrespect here) keep going on about you should be doing this and you should be doing that instead of finding out what works for the individual.

But then again it's not just those involved in your care that are at fault, I had to ask the manager of the gym I attend to get my routine changed because the one I was given was to much which was a big step for me but then again that's been my problem in the past especially since living on my own. The workouts I've been given have been to much and I end up feeling bad for not finishing the routine and end up not going.

Then there's outside influences like the weather, workmen turning up, hospital appointments, dentist appointments, having to deal with benefits and like buses you don't have appointments for weeks then they all come along at once. There's only so much one person can do and at times it gets to much especially when you get no support.

[10olive]

Thanks George. This is very revealing information for me . it goes to show the importance of peer support. In as much as healthcare professionals are experts, we as people living with HIV are self managers and are as important because we live with the disease and so sometimes we can have pratical solutions of management strategies that may not necessarily be obvious to these professionals.

The best relationship is that of partnership between the patient and the health care professional. As people living with HIV it may be useful for us to start to view ourselves as experts especially with our experience and when we notice something that does not work or works let us speak to our healthcare professionals about it. Gilead is launching a resource soon called "positive conversations"providing information to patient communities that will facilitate communicating with professionals and getting more involved with our health care