Today I grew a pair.
I decided to stop trying to change the world and being annoyed that i couldn’t.
i need to get up off the floor, and stop being useless and crawling about. So up I get..and i can’t run, but i can take baby steps! With help…and i can learn to take the help…
But to keep chiselling away, a wee bit at a time, and at least feel good as i could tick those off as things i could manage to do..
- start to make lateral decisions – be brass-necked – contact people who may be unrelated to NHS, but who may be nerdy enough to care…so start trawling for specialists.
- start to stand up against decisions that are WRONG in my name. So much enjoyment in a good gutsy argumentative phone call. I don’t do that enough any more…but today i DID! Get what help in any shape or form i am entitled to, and consider any help which would be beneficial!
- decide it doesn’t matter whether or not I hassle medics to get myself seen to! I matter enough to eventually – albeit by Chinese water torture – get attention!
- call people who haven’t called me back! Keep on it! Not waiting.
- Stop feeling crap about feeling crap – stop apologising to my husband when he has to bring me that heat pack, or the kids when i can’t cuddle them… I am disabled by this. I need to accept that.
- Remember I PAY NHS wages, and that I won’t be treated as if my pain doesn’t matter, or be fobbed off as if this could not be caused by a condition which is visibly there!
- Follow up on things i have been putting off!
- Fact gather on brain …and specifically chiari malformation and arachnoid cyst…and problems which others have in facing doctors and getting validation and treatment.
- Remember how good I am at standing up and challenging people in authority when it is for one of my family, just remember that when I am the patient…remember the work i did for autism and the forces i LOVED to tackle head on.
- Rest when i need to and stop fighting it. This is how it is going to be. Make people realise that!