The Year I Broke

This year I’ve fallen apart. Everything I once held dear has been torn down and ripped away. My beliefs have been shattered, my sense of spiritual connection has disintegrated and turned to dust, and my physical self has crumbled with ill-health and disability. The story of my life unravelled as everything fell apart; I broke. It’s not easy to admit any of this as the truth is rarely easy to face. Yet, I’ve reached a point where I’m no longer able to hide behind the relative safety of my keyboard or to wax lyrical about the joys of pain and

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Rant…

To the man on the lift who thought his shopping trolley should take preference to my crutches – barging one out from under me as it was in his way. To the woman on the bus who felt her overly large handbag should take priority for the spare seat leaving me standing on my crutches until someone further up the bus offered me their seat. To the doctor who wrote to my GP telling her my medical exam was unremarkable even though he didn’t actually do a medical exam. To the woman in the coffee shop who blanked me completely

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Dear Junior Doctor

Dear Junior Doctor, This is a message to all the doctors involved in the current dispute over changes to your contracts. As a career sick person and professional patient (and no, I’m not proud of that), I have had the privilege to be cared for by a great many junior doctors. Strangely I’ve never considered registrars to be ‘junior’ but life is full of surprises. I’m not sure why the government seem so keen to break the NHS and, in truth, I don’t fully understand all of the implications of all the changes they want to make but it felt

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Identity Crisis

My thumb doesn’t know how to be a thumb anymore. It feels awkward and doesn’t know how to sit with the rest of my hand. It trembles, quivers and spasms; its confidence has taken a tumble, and it feels almost alien to the rest of me. It’s either burning hot or burning cold, and it feels like it’s going to explode at any moment. Yet, I think it’s the identity crisis that I’m struggling with the most. When I close my eyes I don’t think I have a left-arm hand or thumb, and when I open my eyes and look

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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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It’s the value of the little things…

The young man that walks past me on the stairs, stops, walks back up and asks if he can help me. The doctor that asks me how I’m feeling rather then reviewing my symptom list. The bus driver that waits when he sees me hobbling along the road as he’s noticed my imploring looks as having a crutch in either hand prevented me from waving at him. The man that opens the taxi door for me and asks me if I’m okay. The ticket inspector that opens the barrier for me and wishes me a wonderful day with a smile.

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Calling A Truce

September 5th 2015 There’s no denying it’s hard to feel appreciation for a life that isn’t the one I wanted. It’s hard to wholeheartedly embrace the life I have as it’s a million miles away from the one I dreamed I’d have. Yet it’s the one I’ve got, so losing myself in whimsical ‘what if’s’ and ‘if only’s’ doesn’t serve me well in the long run as it won’t change anything. Life often takes us down unexpected pathways and avenues, and it can be hard at times to reconcile the life we want with the one we end up with.

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