Mad World

Do you ever get the feeling that you're the only sane person in a mad world? I keep muddling thorugh but life and other people sure as hell aren't making it easy!

Social Services and Nottinghamshire County Council are stressing me out, it seems the people at the top of the ladder who make all the decisions but haven't got a clue what's going on, the people in the middle of the ladder do have a clue but can't change the ridiculous policies and basically have to do as they are told and me the service user is left trying to make sense of all the madness.

Yes that's right I have been on Direct Payments since 1998 but aparently the letter saying I've been on them for 8 weeks is factually correct because Direct Payments changed to a Person Budget 8 weeks ago, and now I'm getting my Personal Budget as a Direct Payment. Of course that is perfectly clear! I don't know why I didn't see it before! At least I managed to get them to stop paying my husband's carer's Direct Payment Personal Budget into my Personal Budget Direct Payments account. It's not exactly personal if you give them money to someone else is it?

I'm going around in circles with my health too. I'm still pretty poorly but laziness and discrimination in the NHS mean that I still don't have a clear diagnosis or treatment plan. In 1990 I was diagnosed with ME. At that time there was no treatment, clinics or specialists so I was left to figure it out for myself. I was pretty ill, lost my mobility and had numerous infections and flares of severe joint pain. My GP back then was unsympathetic at best and any advice I was given only made me worse (exercise makes me worse, then do more exercise. WTF!)

In the past 2 years I've been diagnosed with Reactive Arthritis, have been refused treatment by one rheumy, refused an appointment by another, diagnosed with Palindromic Rheumatism by a 3rd and been strung along by a 4th.

At the moment I've been taken off the hydroxychloroquine (which was helping me) and I have been suffering low grade fevers and joint pain for the past 7 weeks. I don't know where to turn to for help. I have to wait on average 3-4 weeks to see my own GP, I can see another doctor if I phone for an emergency appointment but this is usually pointless because I get told to see my rheumy or my own GP. My rheumy won't see me for another 5 months, she blames all my symptoms on chronic fatigue and just wants to dose me up on Gabapentin, a drug I've had before which makes me spaced out to the point that all I can do is sit on the sofa and dribble at Jeremy Kyle.

I've been thinking about what I want the doctors to do. I want them to find out what is causing my symptoms and to try and treat the cause, and if not cure me then at least help me have a better quality of life. Apparently that is too much to ask of the NHS.

I don't know what to do to help myself. I try and eat a healthy diet and stay as active as I possible can without aggravating my symptoms. I just wish I could find a real life Dr. House to tell me what I have and what I can do about it. LOL!