This blog is going to address how newly diagnosed M.E sufferers will not have a clue about what is about to hit them like a freight train. I was diagnosed after 3 years of tests and being given the run around by doctors. The life altering diagnosis was given to me by a locum doctor. He said ' You have chronic fatigue syndrome, don't worry about it. At least you haven't got M.E...that is sooo much worse'. I was offered no treatment or advice at that point and just sent away to deal with it myself. It didn't occur to me that there would be support groups/charities available to offer help and advice. I simply struggled on for a few years until a GP I was seeing for another issue recommended Pacing therapy. As I keep saying over and over again, M.E/CFS has a varying degree of severity of symptoms. I am a mild sufferer.
People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.The definitions of moderate and severe are as follows:
People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.
|Foggy LOVED watching PFC too!|
Thanks for email. Sorry to hear you're stilling fighting the Labyrinthitis. I do think of you, and catch some of your Facebook entries but unfortunately I've continued to go downhill somewhat. I've not got back to work (since ) and now it looks like retirement on ill health grounds. I've gone down to half pay so hoping it can be sorted before wage stops altogether......I can't believe it was a year ago that I attended your ME talk at the University. I could never have envisioned how I would deteriorate. I think that's happened because it took so long to diagnose and I fought to keep going for so long.