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 escaped from the hell of Very Severe ME, I find myself attempting to summarise my story into a few pages. Here goes...
My ME 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 ME 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 consultancy work part-time; I heeded her 'go for it' advice, she was the supposed ME Medical Specialist after all; I collapsed one week later and deteriorated rapidly into Very Severe ME. Strangely enough, she then refused to take any phone calls from my understandably terrified husband who was desperately looking for help and support. I will never, ever, forgive that Psychologist.
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 spoon 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 ME felt like being paralysed from within, but like so many Severe ME Patients, 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, and amazingly, at the beginning of 2000 my body/brain somehow 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, who fought long and bloody hard for me, then secured NHS 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 patients.
Yes, it has taken several years of hard slog including terrifying relapses along the way, but I now have a good quality of life - as long as I stick to the energy management rules. But I know that I am one of the few lucky ones. Yes, I am living proof that even the most severely affected ME Patients can recover quality of life, given the right advice, the right treatments and the right support, at the right time. BUT I know that millions of Severe ME Patients around the world are not as lucky as me.
Which is why I have tried to write down all I learnt along the way - and especially from my time working with Professor Findley's ME Unit - into my book Understanding Severe ME. I just hope it will help all those poor Severe ME Patients 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. And I truly hope, that now, it can speak for all those Severe ME Patients too ill to speak for themselves and in some small way, ease their pain, and act as a guide out of the hell of Severe ME.
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.
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