Blog: "Falling Down The Rabbit Hole"

Andy · Dec 4, 2018

Thought I'd seen this posted on a different thread but I can't find it, so creating a new thread for it.

I fell down the rabbit hole, like Alice, in 1990. A rabbit hole populated with ‘Bendies’ and ‘Zebras’ rather than Mad Hatters and Cheshire Cats. This unusual journey is at last starting to make some sense.

It began with a bad viral infection, or so I thought. After failing to recover, and following a protracted battle with my GP, I was diagnosed with Post Viral Fatigue Syndrome in 1992. I now know that the story began years before. Being born with an unusual birth defect of the feet – congenital vertical talus that was surgically corrected – was the first of many clues.

Throughout childhood I was fragile and I grew into a skinny bean-pole with short-sight and loose joints, although otherwise fit and active. After leaving college I combined a job in retail with volunteering, only this did not last because after 18 months my knees gave in. It took five years, many inconclusive hospital visits and slow rebuilding to become reasonably functional again. During that time I developed a new career that led to me to help found an electronics engineering business.
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https://inclusionproject.org.uk/falling-down-the-rabbit-hole/

And a positive experience of Gabrielle Murphy

The court case required an expert medical report and this was prepared by Dr Gabrielle Murphy from the Royal Free Hospital’s CFS Service. She undertook the most complete review of my medical history that I have ever had. Her conclusion: CFS was not the right story, or at least not the whole story. She was the first doctor in 20+ years who had recognised the red flag signs for heritable disorders of connective tissue that had been there all along: hypermobile joints, marfanoid build, a history of soft tissue injury, birth defects, allergy and low anaesthetic tolerance.
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Blog: "Falling Down The Rabbit Hole"

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Blog: "Falling Down The Rabbit Hole"

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