Severe ME/CFS Information Pack

Severe ME/CFS is a cruel and physically disabling illness which wrecks the lives of thousands in the UK and millions worldwide. I know because it took my life for several years. One of my promises back then was to do all I could, when able, to help the Family and Friends of Severe ME/CFS Patients understand the nightmare that their loved ones are going through; what Patients and their Carers have to battle against every day, and how the understanding, support and compassion of Family and Friends can make such a dramatic difference to their speed of recovery. Hence this Blog and My Severe ME/CFS Information Pack now available as an e-book. I do so hope that both help guide you through the hellish maze that is Severe ME/CFS

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My Severe M.E. Recovery Story (Part 1)

When I started this blog I had no idea whether anyone would find it at all useful...but after so many enquiries into how I recovered, I find myself attempting to summarise my recovery story into a few pages. Here goes...

My M.E. story began in Summer 1997 - happily married, Account Director of a Marketing Consultancy, active, sporty, great social life, lots travelling, I worked hard, I played hard, life was good. Then came Mild M.E. after a recurrent bout of tonsillitis treated by antibiotics. Luckily I was diagnosed early by my GP, unluckily she sent me to a local Psychologist specialising in Cognitive Behaviour Therapy who recommended a return to work part-time; I heeded her 'go for it' advice, collapsed 1 week later and deteriorated rapidly into Very Severe M.E. Strangely enough, she was then nowhere to be seen...

Back in 1998/99 I was little more than a breathing corpse. For the best part of 2 years all I could do was lay in a blacked out room in excruciating pain, unable to talk, walk or tolerate a glimmer of light. Totally bedbound, I had to be fed, watered, washed, dressed and nursed by my husband, mum and mother-in-law, just like a baby. Unable to walk even 8 paces to our bathroom, bedpans were a daily necessity.

For me, Very Severe M.E. felt like being paralysed from within, but during those years I received no useful medical treatment - I can still hear the comments of the few doctors that did come to see me: 'its a shame you don't have Multiple Sclerosis, I could treat that', and from my original GP: 'don't waste my time, there's nothing more I can do for you'.

Thankfully at the beginning of 2000 my body/brain started to self-correct and I came out of the hideous light sensitivity stage and began to take baby steps on the recovery road; simultaneously, having changed GP, my husband then obtained PCT funding for a 6 week in-patient admission to a specialist unit that could do something for me: Professor Findley's brilliant ME/CFS Unit in Romford, Essex, where I benefited so much from their expertise in treating Very Severe cases.

Yes, it has taken several years of hard slog including terrifying relapses along the way, but I am now 90% recovered. I am one of the lucky ones. I am living proof that even the most severely affected M.E. Patients can recover, given the right advice, the right treatments, the right support, at the right time.

But I know that not all Patients are as lucky as me.

Which is why I have produced an Information Pack (see posting below of September 2009) to help those poor buggers following in my wake. It contains all the information that I so wish had been available to my friends and family, when I was too ill to speak for myself. Really hope it helps.

And next week I will start Part 2 of my Recovery Story, telling you about exactly how Professor Findley's team helped me. See you then.

1 comment:

Anonymous said...

Great blog, really encouraging and hopeful. Keep it up.

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