medical limbo again.

MEDICAL LIMBO….. was a post written in despair a few years ago.

A LOT had improved.

FIRSTLY – i realised WHO held umbrella care for this complex life with its complex issues…

ME

that hit me like a tonne of bricks when on another admission to local hospital for another brain flare-up, we chatted a nice man, say Dr P. Who pointed out that having scanned and checked my brain plumbing was ok, and done bloods to see i had no major infections, that they were just MEDICATING me, and as he was about to say it, I realised it. I am NEVER going to get out of hospital BETTER again, so once my condition goes back to it’s normal level, I (or in reality my OH) can dispense my prescriptions to me, as WE know it best!. WHAM!

The wheels haven’t really come OFF the wagon, but we have certainly had to change track….the needs changed and life has managed to become even MORE complicated… and the ability to see to them has become blurred.

I now have another RARE condition and will be getting trained and upskilled by Dr S in use of a ventilator, and in managing this new condition …………………………………………………………………………………………………………………………………………………………………………………………………. yet we WAIT……………………………………………………………………………………………………………as this condition is CAUSED in my brain but unrelated to my other brain work, condition, recovery…yeah the odds? …………………………………………………………………………………….for a projected TWO MORE YEARS………………………………………………………………………………………………

and MEANWHILE i am not being managed by a neurologist….am WAY above what i could expect a GP to manage, and am on a pain regime prescribed by a Dr Q who has now retired and not been replaced, and GOD i must check where i can be seen for pain management.

LIMBO?

i simply feel adrift from ANY constancy.

gravity free-fall.

scaring the SHIT outta me.

i thought LIMBO was over…how STUPID was I.

pain shocked