My M.E. (C.F.S. – Chronic Fatigue Syndrome)
In August 1995 I had shingles which was very debilitating. Then in January 1996 I got what I thought was ’flu but I didn’t get better and began to feel worse and worse. In March the doctor said he thought it was post viral syndrome from stress and overwork and suggested we should have a holiday. We went to Lanzarote and I realised I could no longer walk more than twenty or thirty yards without muscle pain and weakness attacking me. Home once more, me and my post viral syndrome (of which I had never heard before) returned to the surgery. I had just read an article on M.E. and said half jokingly that post viral syndrome seemed similar to M.E. whereupon the doctor beamed at me and said that PVS was in fact just another name for M.E.. After that it was downhill all the way.
For the first six months I lay on a bed in a darkened room listening to audio tapes when I felt able to concentrate - which wasn’t often. On fine days Brian (my husband) took me out into the garden where I lay on a sunbed and watched the birds flying overhead. I was halfway through writing a novel (Rainbow’s End) and was worried sick that I would miss my deadline. By now my eye muscles had joined all the others and I could not focus on print so could not read or use the PC. I could not use the telephone for more than a few minutes without starting to cry, nor could I see family and friends - company made me worse. My children were very good but found it difficult to understand why visits must be short.
I think a turning point came when Brian persuaded me to dictate just a couple of lines a day on my current manuscript. It was hell and caused many tears and much stress but then one day the story grabbed me by the throat and I tottered to the PC and did half a page, making many mistakes because I could not read the screen. After that I wrote a little whenever the symptoms eased enough to let me sit up instead of lying down. Fortunately my publishers had a manuscript in hand and used this so that took some of the pressure.
All this while I was enduring various horrible symptoms - pins and needles, burning hot feet and hands, a constant smell of burning rubber or rotting cabbage, headaches like steel bands around my head and fearful M.E. sweats which drenched me to the skin. But I had good days too when I could work peacefully on a book for as much as an hour and talk on the telephone for ten minutes. I still could not walk more than fifteen or twenty yards so my doctor got me a wheelchair and this changed my life. I could go shopping although I found supermarkets very stressful. I could enjoy country ‘walks’, ‘wanders’ round garden centres and visits to beauty spots. I could relax at our caravan on Anglesey although the journey down there had to be followed by a couple of very quiet days and later, as I grew a bit better at coping we started going abroad again though again the journeys knocked me for six and for the first two days after the flight I had to stay in the hotel bedroom. The only sport I can indulge in now is swimming but this has to be in salt water because my muscles have never regained enough strength to enable me to stay afloat in fresh water.
When my M.E. is at its worst the symptoms return with a vengeance; pins and needles, the feeling that someone has thrown sand in my eyes, muscles which ache so badly that I hesitate before making the slightest move, burning hot feet and hands followed by freezing cold, sleepless nights and sleepy days, pointless worrying over things I cannot change and worst of all the black depression which nothing seems to shift though listening to audio tapes does help.
I don’t think I have progressed very much in spite of trying most of the alternative therapies which held out a promise of improvement - they haven’t worked for me. I read an article in a national newspaper in which a doctor claimed some success in treating M.E.. So I visited him and was put on an ever increasing dose of steroids. After two years my adrenal glands were suppressed and I became steroid dependent. The doctor disappeared. This was my last attempt at self-help if you can call it that. Of course I have good days but then I usually go and overdo it and have to suffer the pay-back.
My lifestyle has changed totally. I work on the current book for about three and a half hours every morning (and am better for it!) but have to go to bed every afternoon and rest properly. We were great walkers before M.E., enjoying the beautiful countryside around our home, but now I see it from the wheelchair. I do have a scooter but can’t use it for long because my arms are too weak. Brian is my carer also my work colleague since I cannot read print and can no longer do my own research. He ‘reads me in’ to the current book each morning so I know what I said yesterday!
For the first four or five years of M.E., once I was well enough I continued to type my books straight on to the computer. Then we had a road traffic accident and I got severe whiplash. I could not sit upright for long without a great deal of pain. I had a deadline coming up so I advertised for a secretary and since then I have dictated my books.
I am frequently horrified by the way M.E. is still viewed by some of the medical profession and well as society. People with M.E. are physically ill and to see an intelligent doctor tap his head significantly when he thinks you aren’t looking is very distressing. M.E. sufferers become expert actors and this unfortunately can give the wrong impression. A friend once said ‘I saw you standing up and trying a coat on in Marks; you have obviously thrown off whatever was wrong with you - no wheelchair.’ I had stood up from my wheelchair to try on a coat and as soon as I had done so sat down again. From that moment on the woman who had seen me on my feet for no more than three or four minutes told people that she had seen me without the wheelchair which I clearly did not need. I could have screamed! Openly expressed disbelief in ones disability and any suspicion that one is enjoying ill health rather than suffering it, does not help.
Because I am unable to read more than a few lines I tend to save my ability in this direction for my work. Brian reads me the odd article about M.E. which appears in the press and anything he feels relevant in the AfME magazine and also from the local support group’s magazine but most of it is too technical for me - what I’m really interested in is a cure.
In my secret heart I believe that if I stopped work I would improve a lot (I am always very much better on holiday) but I am compulsive writer and working makes me into a person again and not just another medical statistic.
Of course M.E. creates stress - what illness doesn’t and of course stress makes one worse - but then in my experience exercise makes one worse also.
My advice to anyone with M.E. is never to overdo it, never to push yourself and to have as much fun as you can without reducing yourself to a physical and mental wreck. Try not to let family and friends stress you out. Keep meetings and telephone calls short and the minute you feel tiredness beginning to creep up, lie down and relax with a book (if you can read) or a tape if you can’t. My own personal feeling is that time alone conquers or eases M.E..
Despite knowing that the above is good advice, I’m afraid I rarely follow it myself!!
For more information about M.E. and support, please visit Action for M.E.