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I'm 28 and live in Brighton with Chris my boyfriend and Jamie our beloved cat - she's snuggled me through many difficult times when I lived alone previously. I have Asymetric Spastic Quadreplegia type cerebral palsy. Cerebral palsy affects both my arms and legs making my muscles stiff and painful, but also very uncooperative when I want to move and my balance is poor meaning I can fall and hurt myself.
Despite the challenges cerebral palsy presents I try to live an active a life as possible, I have a fiercely determined spirit and like to get around independently as best I can. But in the last year my health has significantly declined after a fall and I desperately need some private intensive physiotherapy twice a week for a year and possibly on going, to reclaim my mobility, independence and freedom and I NEED YOUR HELP!
Yesterday my lovely tricycle which I have nicknamed 'Steed - the helping bicycle'. Steed was stolen from outside our property while Chris was in the process of changing the saddle, with the hope of me being more comfortable when I ride. Sadly this isn't the first time the bike has been stolen. Last time it was found by a member of the public and reported to the police after a successful Facebook campaign for it's safe return. Again we appealed to friends, family and the local community via Facebook and Twitter. The response from everyone near and far has been so supportive and understanding, and there's a real determination to find Steed wherever she is! We hope if it doesn't return we will be able to claim on our household insurance as it is specifically insured. However, if the insurance company don't come forward then we'll need to organise a replacement.
It's been really wonderful. I feel so fortunate to live in such a caring community. Honestly the support I have received has been incredible. So many messages of support.
We gave her a good spring clean and I did have two rides on Steed the evening before she was stolen, despite the uncomfortable seat I still felt free and knew we were not far from having Steed in a perfect condition and ready to take me on adventures. It seemed that the opportunity to increase my fitness and go anywhere I wanted independently was within touching distance. Then she was stolen! I hope the tricycle will find its way home to me soon.
We have been really touched by the generous spirit of everyone who has responded to the theft of the tricycle. Sadly I have struggled to ride much at all as after a bad fall just before Christmas in which I hurt my hip. I have barely been able to walk confidently since and have needed support of someone holding my hand just to get around the flat. A stark contrast from when I could, on one of my good days, walk to the local shops and carry a small amount of shopping on my back unaided.
It's been hard to keep my spirits up and depression at bay, but I've got a strong network of friends and family who keep me going. I want to get well enough to work and travel with Chris. I love life and want to be able to make the most of it and be in the best health I can.
I had major surgery at 14 years old and had to take 18 months to recover and relearn to walk. So it's sad to have lost so much of the confidence in my walking and independence I worked so hard for. I want to get it back and am determined to do whatever it takes. But I NEED YOUR HELP!
Unfortunately the physiotherapy provided by the NHS is wholly inadequate for my needs now I'm an adult. It's like I've been given all this support as a child and teenager and then just left in the wilderness to get on as best I could with physiotherapy by myself. It seems such a false economy as sometimes I ask what was all the pain I went through for, and all the money that the NHS invested to help me if now I'm stuck at home on the sofa almost totally reliant on my wheelchair when I want to go out; and not strong enough to work or raise a family in the future or travel which are all things we want to do.
I spend a lot of my time napping on the sofa as the pain medication is making me so tired. It's not that I don't want to get moving, I do, but when I take a step often the pain in my hip is so sudden and sharp like a shard of glass that if I walk unaided I fall because of the pain.
Believe me I have tried many rounds of NHS physiotherapy to make the best of things. But with the system as it is, physiotherapists seem to hardly want to touch or stretch my muscles now I'm an adult. The short bursts of 8 sessions of physiotherapy are all focused on getting me out of the clinic as soon as possible before I'm discharged again and have to wait for months for a re-refferal. The cycle is so exhausting and frustrating and not even providing the kind of physiotherapy I need. One physio suggested I stood next to the counter and stood for as long as I could as if that alone was going to be a solution to getting strong, another GP suggested I tie my hair back and drink more coffee! When I spoke to another physiotherapist for one private session I had in September she was appalled by the treatment I had, and hadn’t received.
So I'm looking to the support of my communityand family and friends to help me. I promise I will make you proud and find a way to pass on the good vibes and do something good for the community when I am stronger!
I am looking to initially fund one year's worth of private physiotherapy and a new tricycle too, if it comes to it that mine is not found. Every pound and penny will mean so much. I can't do this alone, but I will work so hard to get back on my feet and ready for adventures!
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