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Chroncially Unnormal How things change and stay the same

Chroncially Unnormal How things change and stay the same

I’ve been in contestant agony for 10 years now. The pain is worse than it as ever been by a long way these last 3-4 months. Right now I’m more highly medicated then ever but as before though they still don’t touch the pain. I hate to admit but the sound of me screaming has become a quite common recently. Even just writing that sentence is very hard. I always thought I was being honest when I was writing these little blogs but now I realise that I haven’t. I have not made it clear now truly terrible and all-consuming my pain is. I spend my life hiding the pain under the surface or behind closed doors. I understand that the people who care about me wouldn’t like the fact I’m, well, lying to them but when my pain is bad it is frightening and upsetting and I can’t stand upsetting people. With my parents it's different as I obviously can’t hide it from them as I live with them and they’re my carers and even if I try to they know all the signs anyway. I know that it kills them to know they can’t take away my pain which I think is stupid. They know I feel terrible about upsetting them which they think is stupid. So we have this whole circle of stupidity going on.

I’ve always refused to moan about the way I am. I’ve found the best way for me to deal with chronic pain is to concentrate on other things, my studies, my pets and cooking as examples. Moaning about life I find just makes life more miserable and with all the things I could find moan about I think I’d still be going at the end of time. This blog feels like a moan to me but I’ve decided that if it is going the be worth anything to people who may be in a position like mine I need to actually be honest rather than just saying I’m going to be.

I've also developed postural hypotension I've got very low blood pressure which drops suddenly when I stand up. I go dizzy, then blind, sometimes deaf and on occasion pass out. It's due to my hypermobility the collagen in my veins and arteries isn't strong enough to pump the blood to my brain. Another symptom hypermobility I have which I haven’t mentioned before is that it causes irritable bowel as collagen is also found in the intestines. It was one of the main reasons I was absent during primary school and it’s not something you can or want to explain to other young children. I think most of them thought I was skiving but at least the teachers new why I was off.

Recently I’ve realised how completely isolated I'd become. I missed some really important years of my life. I guess it has truly hit me now as I finish my degree in October. It’s taken 6 years and has been the most important part of my life. I guess I have been using it to hide the other things I have been missing like any kind of description of a social life.

I have something to look forward to though as I’ve been given an unconditional place to do an MSc in Conservation Biology with Zoo Studies. It’s part-time but it still means I have to attend 3 hours of classes a week. That may not sound like a lot but at the moment I barely leave the house and I’m worried that my pain isn’t going to settle down before I start in January. I am really excited about it anyway.

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