My Battle

A friend of mine messaged me recently and said I should join a group on face book for people with hyper mobility. On joining the group I realised I knew shockingly little about my condition. I’ve been to pain clinics, physiotherapists and specialists in rheumatology. But still it took 15 years to get properly diagnosed with hyper mobility and after blood tests and X-rays, as well as a short lived stint in physio I was told there’s no cure, all I could do was take pain relief and that I’d get worst as I aged. You can imagine how over joyed I was at this. But after being discharged I accepted that this is just how things are for me and managed it by resting when needed, having knee injections, taking strong pain medicine and anti depressants. So thats my life, then I joined Manchester EDS/HMS and was astonished to learn new information about my condition and how it wasn’t just me being “weird”. For instance the clumsiness , many suffers have the problem of walking into things or falling over things that aren’t there. Another one is only ever feeling comfortable when lay down, sounds odd, but sat up I ache, standing I ache, but this is another common problem for suffers. The biggest discovery came from a fellow member who said I should get a referral to a doctor in Manchester who specialises in hyper mobility, and also that there’s a child specialist for my son who was recently diagnosed. I know there’s no cure and prevention is key. Probably a lot of what’s wrong with me now can’t be relived but hopefully I can make sure my son can have the best chance possible of living his life without pain. I’ve also discovered there is a connective tissue problem which I may have or it may just be joint hyper mobility but whatever the case it will give me answers. I’m finding recently my condition has worsened, my hands have got stiff and sore and hard to use and my body feels like poison is pumping around my bones. It’s hard to live with but I try my best. One of my outlets is writing but I’ve been so ill recently it has fallen on the back burner. I miss it and just keep waiting for the good days to come.


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