10 Baby Steps….


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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..

  1. 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.
  2. 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!
  3. 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!
  4. call people who haven’t called me back! Keep on it! Not waiting.
  5. 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.
  6. 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!
  7. Follow up on things i have been putting off!
  8. Fact gather on brain …and specifically chiari malformation and arachnoid cyst…and problems which others have in facing doctors and getting validation and treatment.
  9. 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.
  10. Rest when i need to and stop fighting it. This is how it is going to be. Make people realise that!

H

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