CRPS – My Embuggerance (Part 2)

A friend once said ‘CRPS? Oh, you should call it CRaP for short’ giggling at her attempt at humour. Trouble is crap makes it sound like a niggly little irritation. Yet, it’s an embuggerance of fairly epic proportion. It’s pushed my many other conditions into the background as it’s an attention seeking little madam, constantly going ‘me, me, me!’ as it demands all of my energy and attention, preventing me from getting any rest or respite, stopping me from thinking, seeing and living. So, I’m currently doing battle with my very bewildered brain trying to find ways for it to

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CRPS – My Embuggerance (Part 1)

Perhaps the most challenging of my conditions is CRPS – Complex Regional Pain Syndrome (previously known as RSD). Most people haven’t heard of it nor have most doctors, and, as a result it’s missed, misdiagnosed or dismissed a great deal. CRPS sounds fairly innocuous but it has the tenacity of a rabid ankle-biting terrier that won’t back down; its teeth are constantly clenched as it growls and reaches right into the very core of me. I live with pain constantly with joint dislocations, severe migraines, neuropathic pain, a crumbling lumbar spine, pelvic pain, bladder and bowel pain, a never-ending stomach

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Some New Credentials

Although the concept in itself has never really impressed me, I’ve often thought having letters after my name would show a life of learning and personal evolution. Now I have loads. I’ve got an impressive list of letters that sit snugly against my name. Yet none of them come from academia, nor do they come from professional or career development. The letters after my name are all medical, but not from years of studying medicine and science but from years of being ill and gathering a plethora of diagnoses and conditions. ‘Sarah-Jane Grace – EDS HT, CRPS, FMS, PoTS…’ I’m

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A New Understanding

Well, it’s been four months since I left Stanmore (the RNOH, Stanmore) where I spent three weeks on a rehabilitation programme, or perhaps ‘condition management programme’ would be more apt. I’m still processing the experience and trying to get my head around it. Strangely for me I haven’t, until now, written about it. It’s as though the words were whizzing around in the depths of my consciousness in unformed and unlinked bits and pieces. Once in a while a sentence emerged but it felt twisted and juxtaposed to everything else. Yet why? Why have I struggled to write as writing

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