frustation....

looks like im going to have to explore the possibility of ill health retirement.( combination of my two conditions)

My occ health hasnt thrown it out, and is happy to put together a report and i will need to contact other medical experts for their statements on my health.

Sadly my gp, whom i had an excellent relationship with, who knew me well and my health issues is no longer a practicing GP ( This has actually shaken as much as anything, she has been supportive for many years and always repected my approach and participation in my own healthcare).

Going to book a double appt with my new doctor to get her up to speed and also chat about the way i like to work with a GP. my old GP was a one off , so im not expecting this one to meet her standards . so now im left with a doctor who .. has no sense of me or the adjustments i have made over the last 8 yrs with work etc just the records to go on .And a consultant (Neuro) who has seen me once to give me the MS diagnosis, but who doesnt know any of my symptoms.

The nature of the MS beast ( symptoms comming and going) and the inaccessability of seeing a consultant , means that he cant possibly be up to speed .
so im wondering what exactly is the role of a ms nurse? And if it is worth seeing her on a regular basis to keep her informed with my health ? I wonder if there a way of her to relay the information to the neuro consultant, so if he is called upon for a report he will actually know a bit about me and what im dealing with?

sorry for the downer post , im feeling overwhelmed with it all and kind of stranded with health professionals that will have so much influence in and ill health retirement decisions , yet they dont fuly realise the impact of what i am been dealing with and its hard for me to find the opportunity that information accross.

Please dont...

PLEASE DON'T…

Don't assume because I look well

That I feel well.

Looks can be very deceiving.

Many days I look great but I feel terrible.
Don't ask me how I feel unless you really want to know.

You may heara lot more than you are prepared to listen to.
Don't tell me you know how I feel.
No-one knows how anyone else feels.
Two people with the same disease may feel totally different.
Don't tell me about your Aunt Gertrude
And her MS and how well she managed in spite of it.

I am not Aunt Gertrude and I'm doing my best.
Don't tell me" It could be worse."

Yes, it could be ,but I don't need to be reminded.
Don't decide what I am capable of doing.
Allow ME to decide what activities I can do.
There may be times I make the wrong

Decision, and if I do I'll know it soon enough.
Don't be upset that I cannot ease my problems.

It won't do any good for any of us to be miserable.
Don't assume that because I did a certain activity yesterday
that I can do it again today.
MS is ever changing.

Do realise that I am Angry and
frustrated with the disease -
NOT WITH YOU