Today was a busy day.. Rebecca came to move push zimmer into car, as she arrived early she managed to empty dishwasher , load dishwasher and fold and put away washing. So a great start. Thankyou Rebecca and Iris.
Without a cleaner ( she's on holiday) this week, it has been difficult.. and also managing without a fridge/freezer.. sadly, I've got behind in tidiness, as to tidy takes so much energy. Help from good friends is invaluable.
Last evening I went out, and was so grateful for lifts, but when you cant move yourself in a push wheel-chair, you can feel quite disadvantaged and quite vulnerable, you cant move yourself to be sociable.
I seem to get the feeling that others don't know how to approach us, ie the us with MND. But my view on this is, that we,who have MND, and are trying to cope ,....................... please people do give us your support. We are just normal people who have a shit illness!
Anyway all my difficulties were due to end today.. I was supposed to get wheel chair, then take it on to Brookes Miller at Elland to be measured, to have lock-down fitted. This would have meant that I would be independent and free in so many ways and would collect car on Friday...
Yes, I would need help to charge chair, and to get me from back to front of home. But I did realise I could get neighbours to give me a lift .......or even ring a taxi to do the move. £3 would be a small price to pay for the freedom I would have...
So after a visit to Misty Morn, to check on paint colours, I drove to Wheelchair services in Halifax.
We did tests and found that when I reversed the wheels caught the foot rests and scraped my ankles. Realising that if the chair was tilted then this problem was solved. Then on to kerb climbing! Wow how terrifying is this. You have to approach kerb with speed and keep going. if you don't keep up speed then you get stuck! To get off curb you have to approach backwards . Haven't got the vocab to describe this hanging and bumping in mid air!! Believe me I shall avoid kerbs wherever possible. Heaven help any person who parks in front of a dropped curb from now on ... they will so get the edge of my tongue!!
Unless you have these challenges to face you simply don't know how hard they are.
Olympic games , we all deserve gold medals!!
So, with new shiny wheel chair in back of green van, I set off for Elland. Getting used to controls now... feeling good.. freedom is nigh!!
Get to garage dept. Having looked at car and chair, there was much shaking of heads. The lock down will need to be special as the height of the chair is slim, any low lock down will scrape getting into van and also will scrape on any rough surface.. even including door bars between rooms.... so no use... The appropriate lock-down will cost £1000.
I had been given to understand that whatever lock down I needed would be free from Motability. I believe I have been mislead.
SO... not only do I not have planned freedom this Friday.. a weekend of fun with Lisa, the ability to go Chrissies Baby shower ( which she has planned with a place on mind with ramps and disabled toilets). but also I still can't even get into doctors, cant go round shops without a pusher...etc etc .... and at the end this it could all cost £1000.
£1000 in other terms would be 60-70 hours of a carer.
Waiting another month could be 1/24 th of my life.. It has been 3 months, .........1/8 th of my life waiting for wheel chair, and since DLA award in Jan, (when I could have had a car, but have waited to get the right one), it's been a possible 1/4 of my life...
( these fractions worked out on MNDA expectation of life of 2 years..even if its 3 yrs or longer. it is doubtful that I will manage to drive round, and not need considerable help after 2 years.)
Dramatic these effects....
Most importantly it's the mental effect not being free,the mental effect of having had to wait , patiently, for the wheel chair, and yet to find that I still can't use it...
This is so, so , terrible... much more than frustrating.....you cant imagine.
I want to use, live my life for as long as I have.
If I were rich, so many of these problems wouldn't exist... but I'm not.... where is the morality in this.... I've been an honest, diligent worker all my life.
I don't mean to be greedy, and I do realise that there are many others in need, but get a grip government, this is simply not good enough...
HUG ME, I'VE GOT MND
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