Dear Friends and family,
As you probably know I have a progressive neuroinflammatory disorder, Complex Regional Pain Syndrome (also know as Reflex Sympathetic Dystrophy) affecting my right arm, and my left leg and foot.
I am in severe unrelenting pain 24/7 and now have very limited mobility too.
Additionally I have a number of conditions that often coexist with CRPS including Fibromyalgia (possibly a result of the M.E./Chronic Fatigue Syndrome I battled to overcome in my teens), Hypermobility Syndrome (causing Pelvic Girdle Pain & continual partial dislocation of my pelvic bones,which is as painful as it sounds) & Dysautonomia.
While I can still walk using a stick over very short distances, some of the time, I can no longer walk very far or very often, and fall frequently.
Any further injury, no matter how minor, could cause the CRPS to spread to a new area. I can only stand for very short periods of time, and struggle to sit comfortably in standard seating.
I can not use a mobility scooter or self propel my manual wheelchair at all because it causes my pain to worsen significantly, and am thus unable to leave the house or go anywhere independently.
My husband's own health issues limit how much/often/far he can push me in my manual chair so it is only really an emergency option, and of course when he is at work I am completely housebound anyway.
I am not eligible for an NHS electric wheelchair because a) I can walk very short distances albeit in severe pain and b) because I 'live in an unsuitable house' (NHS Powerchairs tend to be very large and cumbersome, and not suited to a narrow Victorian terrace!).
I am therefore looking to fundraise for a suitable electric wheelchair/powerchair, that takes account of my medical needs and personal circumstances. I need options like specialist comfort seating, rising leg rests, the ability to tilt or recline the chair to ensure my comfort,and -the big one - proper suspension.
This takes the price of a powerchair well above the £5000 mark.
I have spent many months researching and trialling many powerchairs to find one that suits my needs for the least amount of money.
The most likely contender is the Quickie Salsa M, and I am of course looking for suitable second hand models.
Getting a powerchair would allow me to regain my independence, give me some freedom, and be a 'normal mum'.
Just simple things like being able to go with my husband and son to the park 100 metres from our home, do the supermarket/grocery shopping without being in a pain flare for days as a result, have days out as a family, go clothes shopping ON MY OWN, take our son to nursery/school when he is older.Ordinary everyday activities that most people are lucky to take for granted.
Additionally I need a suitable hoist to get the chair into our car. A suitable hoist (Autochair Olympian 200kg MiniHoist) for the Salsa M and our car is going to cost upwards of £1800.
We also need to ensure our house has suitable ramps so I can get in and out!
Clearly the total funds necessary may well exceed the £6000 (approx $9400) target, but we felt that a higher target figure might seem a)'greedy' and b) seem so unobtainable that people might decide that their donation wouldn't make a difference.
I have of course applied to appropriate charities, so far without success.
Any help anyone can provide to help me regain my independence would be very gratefully received.
We appreciate that times are tough for many, and that many of my Facebook friends in particular are in similar circumstances.
If you are able to donate to the wheelchair fund, no matter how small the amount, that would be truly wonderful, and lifechanging for me & my family.
If you would like to help but are unable to donate, please share this page with your friends and family, and anyone who may be willing to help.
Any monies raised will ONLY be used towards a suitable electric wheelchair, car hoist and ramp/home adaptions to enable me to get full use of a wheelchair.
If I am able to find suitable items 2nd hand, I will close this page since I do not want to ask for/or take a penny more than is necessary, though hope you understand we have exhausted all funding options except for crowdfunding/21stcenturybegging!
I always find the phrase "confined to a wheelchair" a little odd, when it is the lack of one that is so confining....
Thank you all so very very much.
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