Going back to this condition, i find sometimes your enjoying things or doing something that really takes your mind off whats really going on and has me feeling like ive got nothing wrong, obviously your brought back down to earth with a bump when fatigue kicks in or you fall over! These occasions are few and far between, and most the time your it consumes everything you do. Constantly worrying about falling down the stairs is biggest thing, ive fell down a few times but luckily not done any permanent damage :-)
We had our local council OT come out a while back and was less than impressed with what she said. Basically she recommended a through ceiling lift to get me upstairs, which we wasnt keen on as we dont have much space in rooms as it is. The other was widening our bathroom, which is 6ft x 5ft, we even have to use a folding door because its so small, anyway by widening it we would eat into my daughters bedroom which isnt the biggest either.
We argued that this is a very progressive disease and in the end we would need a small ground floor extension so that a bedroom and walk in shower/toilet would be easily accessed so bearing that in mind spending money on a lift and altering upstairs would only be a short term solution. She could not consider the extension and also Pollys income may forfeit any help from the council! what about all the bills she has to pay? oh they don't look at that! what a bloody surprise. Oh but i can get handrails free, what friggin use are them when you have no hand/arm strength! We can get you some chair raisers, oh lovely, thanks.
I suppose its all understandable in a way but it does get you down at times having to battle for help and being penalised for having a job!
Anyway we will fill an assessment form in and see if we could get help but im not holding my breath. We will no doubt have to save the money our selves, which we will do to get what we know we will need.
This post started off so well lol. My rants just pop up now and then :-)