They tried to make me go to rehab, and I said that would be quite helpful actually

Next week I am going into hospital for three weeks, for intensive rehabilitation and pain management. 

My Ehlers-Danlos Consultant recommended it and I’ve been on the waiting list for a year.  Traditional pain management can be quite sporadic – a session of physio here, looking at medication there and seeing a therapist when it all gets too much a few years later – but on the programme they try and cover everything in the three weeks. They even have craft and gardening sessions as additional sessions. 

I’m half excited, half terrified – although the scared bit is about all manner of stupid things. I’m looking forward to learning the proper way to exercise that doesn’t cause damage to my joints, and spending time with people like me. Someone I know with Fibromyalgia went on a similar programme and can now stand longer, and has reduced her medication. So I’m hopeful. 

However, the thing I’m worried about most? Sleep. I know, I know, it’s pathetic. But sleep to me is one of the most important things in the world. Because of my exhaustion, I tend to sleep for a long, long time – 12 hours or so, even if it’s not all great quality sleep. My room needs to be pitch black, and completely silent – no clocks allowed, lights covered up. I wake easily, and if I don’t get those 12 hour sleep – I’m a mess. I haven’t been up early, except on a rare occasion since July, when I had to go onto sick-leave, and the programme requires 7am starts. The thought makes me feel sick, because when I get that tired – I struggle to concentrate and my energy depletes, and this is my one chance to try my hardest to get better. 

My lovely mum has bought me earplugs and a sleep mask to try and help with the noise/light, but I’m not sure I can sleep with earplugs as they make me feel very vulnerable. But it’s worth a go! My other big worry is about pain. I pay for two treatments a week from a McTimony Chiropractor who also does deep tissue massage. It has been the only thing to ever help with pain relief. And I have to give it up for three weeks. What if I can’t do anything as everything hurts too much? When the pain gets that bad I can’t concentrate, and focus on things.  I also hope I’m not going to be the only younger one there – which isn’t a big deal, I suppose – but it’s always nice when you feel a less of an anomaly.

So they are my worries. I hope they are silly and come to nothing, and I really hope this is the start of something really positive. This year I wish to have condition improve lose weight, and get a job I love. That would be a perfect year.

Hope.  Credit to Robert Michie

Hope. Credit to Robert Michie

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