Just a little Update

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First of all sincere apologies for the lack of updates lately.  It’s been such a busy time, that writing has fallen by the way-side a little.

I just thought I’d give you a small update about what I’ve been up to lately.

I recently wrote about the process of obtaining a Personal Budget to employ a Personal Assistant.  I’ve had that in place a couple of months now, and it’s been brilliant.  She’s been able to help with a range of things, from the obvious helping with care, but also driving me to appointments, getting my wheelchair out, cooking, sorting out areas I haven’t been well enough to do in my home, etc.  It’s taken quite a bit of stress out of my life and I’d recommend it to anyone.

Medically I’m still very much in no-man’s land.  The Pain Clinic have declared me incurable and untreatable, and discharged me.  Apparently they only help people who will get better, they’re not interested in actually managing pain.  My specialist consultants also are no longer able to keep me on their books due to over-subscription, so I’m consultant-less.  It’s quite a scary place to be.

My GP has been trying to help with this situation, and wrote to a local Rheumatologist who lists himself as a connective tissue specialist on the hospital website.  He rejected my referral, and wrote back saying, “I have no interest in managing Ehlers-Danlos Syndrome.”  Although he did refer me to a Hypermobility Specialist Physiotherapist instead.  Silly, silly me actually got my hopes up and thought she might be interested in working with me to move forward.  Instead without any examination she declared there was nothing she could do, so I’d have my final batch of Hydrotherapy and that would be it.  She then spent the rest of the session basically telling me I should be perfectly okay in the mornings, as other people with the condition manage.  I tried to explain I have severe insomnia and sleep issues, and am a total mess in the mornings, but she wasn’t interested.

I then finished my final block of Hydrotherapy, which I really enjoyed.  I do find the warmth means I can do much more than out of water.  I would love this on a rolling-basis, and will keep trying to pester the hospital to make this happen.

I’ve also just had a sleep study done, but I’m waiting for the results.  It was a machine I had to take home, that strapped to my stomach and chest, a tube went up the nose (nice!), a mask for your mouth and finally a clip for your finger.  They have to rule out Sleep Apnoea before they’ll send you to a sleep consultant, but I am a little worried they’ll tell me it’s not Sleep Apnoea, and then not let me see anyone at all. Hopefully I’ll get the results soon, and this long-term issue is explored.

I have been lucky enough to find a private physiotherapist, however, that has an interest in Ehlers-Danlos Syndrome – and he genuinely does.  It’s a lot of money, but the only treatment I’m now getting.  He hasn’t promised he will be able to help me, but he’s going to try. If I can even maintain what little mobility I have, that would be a start.  I’m diligently doing all the exercises he’s giving me (not a hurriedly printed out sheet, but thoughtfully targeting specific issues) and he’s easy to contact if things go wrong to provide advice, and alternative exercises.  He really seems to know his stuff, so that’s been great.

I also recently took part in a study on Ehlers-Danlos Syndrome that’s all about what triggers the condition in the first place (obviously it’s genetic, but there is often an occurrence in your life that makes it much worse, often puberty, having children, an accident or something else.  Others just have it severely from birth, so it’s exploring all of that.)  The research also looks at flare-ups and the triggers.

The research sounds really interesting, and when it’s published it will obviously go into medical journals, but particularly GP and physiotherapist journals, to catch front-line staff.

One thing I truly believe is that the fight for decent rates of diagnosis lays almost entirely with GPs and Physiotherapists.  They’re the ones that have to see signs, and see past one problem joint, or a history of chronic pain without a solid diagnosis and make a referral to a specialist.  Once they have that awareness, only then can diagnosis rates climb.

I’m also preparing for Christmas, and this year have decided to have my first ever real Christmas Tree!  I’ve also been making festive bunting with the help from my Personal Assistant, and it’s the first year in a really long time I’ve been genuinely excited for Christmas!

Please comment below to tell me your news, and whether you’re looking forward to Christmas or not? 

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