I don’t know how many times I hear the words…..
Yes I can stand, yes I can walk, but I struggle to walk, it causes me so much pain I often cry, my knee caps dislocate with every step, and I have developed complications due to how I walk.
I have Fibromyalgia, I have Joint Hypermobility Syndrome (a form of Ehlers Danlos Syndrome) and I have Subluxating Displaced Patella’s on both knees with my left knee being the worst. For 2 years I walked with (very expensive) adapted crutches and ankle braces/insoles (to help keep my legs straight), and the crutches had shock absorbers in to try and take some pressure off of my shoulders, wrists and elbows. These worked for a while, but I have now developed shoulder problems, elbow problems, arthritis in both wrists, and I had carpal tunnel in both wrists, which were operated on by the amazing Sam Vollans and the teams at Chapel Allerton (left wrist) and LGI hand unit (right wrist) last summer.
I asked for a wheelchair from the NHS, but I only qualified for a transfer chair (that would need to be pushed) so I had to buy my own. I love my chair, it gives me a lot more freedom, (however, it doesn’t help with my coccyx pain from falling down the stairs but that is a story for another day). The chair folds down like a pushchair and fits into my little car great.
My chair was from Mobility plus, and I will add a link at the end for this and my crutches (this photo the chair had a fault – the guys are Mobility Plus replaced the chair for me no questions asked).
So, what is the point of my post – don’t judge a book by its cover, and if you have nothing nice to say, don’t say anything at all! Feel free to ask questions instead of making judgements, we don’t bite!