What a lovely few days we are having :-) It makes me feel so much better when the suns shining and its nice n warm! Would love to do something nice today but feel quite limited. Its days like this that you go out for nice walks, take our Alfie on a stroll somewhere, but then it clicks, hang on i'd only get 100yards then i'd be goosed for the day! such a shame. My thoughts about a scooter has been taking over my mind the last few week, it would make things easier for going distances outside but i cant help but feel i will look a fool on one. You tend to think of them as a means for old, less mobile people to use for going shop, not really nice to think of it that way but its quite true, you never think at 36 you would need a scooter! I will have to get one soon but i need it pimping up a bit lol, some alloy wheels and a spoiler on it hahaha.

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 :-)





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Fighting My Losing Battle with MND.