• Anonymous - I Did Recover

    I saw details of Foggy Friends on the television and have had a marvellous time exploring it. There are so many stories and most seem to hope but not sure that recovery is possible. For some it may not be, but I did recover and perhaps my story may be of some hope and help to other present sufferers.

    It all began in 1979. Before anyone knew about ME, it was called Icelandic and Royal Free disease in those days. People thought that I was loopy to even consider that such things existed and that was what was wrong with me.

    It came on like a thunderbolt. I had gone out to lunch and over coffee I thought that I was going to die. My head felt like it was suffering a full blown migraine (Though I've only ever had two of those) but I didn't feel sick and had no problems with light. I asked my husband to take me home, afraid that he would think I'd drunk too much. The journey was terrible as I was trying to appear normal with no idea what was happening in my head and body. By the time we got home I was feeling better and managed to walk out of the car, but on the lawn my legs gave way and I collapsed into a crawling position. My sight was on and off (Though it is fine normally and I don't wear glasses), hearing was 'far away' and after about 5 minutes my arms gave way too. I just lay there unable to talk. After being carried up to bed I slept for 48 hours solid.

    The next week I was in an agony with pins and needles all over my body, but I just got on with getting the children to school (They had just both contracted german measles and got over it. I had had it as a child and had the jab before getting pregnant and therefore couldn't get it again! Our doctor was consulted but said that sleep was the answer.

    One day I discovered spots. "Oh great," I thought. It was a case of german measles (Coxsackie B virus), with a few 'side symptoms', which were really all the 'normal symptoms' of ME. Bursting into tears, losing control of my limbs at inopportune moments, sensory bits working on and off, slurring words, basically acting as though I was in the last stages of alcoholism. I knew that something was really wrong when one of the boys came in with his knee pouring with blood. I went to sort it out and just fell off the kitchen chair and couldn't help my child! There was nothing I could do to pull myself round this time.

    My husband bundled me into the car and down to the doctors, where he had to carry me in. I lay on the couch and through a fog I could hear the doctor quizzing him, very gently, about my alcohol intake! I was taken off to hospital and into a side ward, where I was in agony with measles-associated arthritis. My joints were swollen to ridiculous proportions, webbed hands and feet. The vampires came to collect blood at least twice a day for 14 days and then they said there was nothing wrong with me and sent me home!

    For 6 months there were good days and there were terrible days when I just couldn't even lift my head off the pillow. The pains in my head were dreadful and the aches in all my muscle groups were atrocious. I went up to London to see a psychiatrist who told me to "pull myself together and stop indulging in self caring!" I also had brain scans and the like and still nothing. I found that eating oranges helped - I was consuming 4 or 5 a day, and when they went out of season I changed to Vitamin C. On good days if I went out I always took a Mars bar and if I began a 'wobble' I knew that I could get home on the Mars. The desperate thirst, which resulted in my swallowing so much water that I it was sloshing around in my gut, was gentled by substituting soda water for straight water.

    Eighteen months after my first symptoms, I was trying to lay a cork floor and was listening to Woman's Hour on the radio and there it was, all my symptoms and the diagnosis - ME. I wrote off to the ME society and filled in their questionnaire - amazed that other people were the same as me but so thrilled that I wasn't going totally mad. I went to a faith healer and the pains in my head, which were like red hot knitting needles being plunged through my brain lasting a few seconds but with an 'aftershock' of about 10 minutes, ceased almost completely.

    You all know the ups and downs, the suicidal feelings they engendered and the lack of hope of a cure - every one of them beset me. If one more person said "Just take one day at a time dear," I thought I'd scream. The horrid grey countenance that developed before a 'wobble' became a signal for everyone to say 'Mother - BED' and in the end I just gave in and went, whatever the time of the day.

    After about 4 years the bad bits became steadily less. The good days were always threatened by the fear that the bad would come back. Every time I got in a state where adrenalin coursed through my body I knew that I would wobble within half an hour so I learned to avoid those situations; it was always two steps forward, one back. After 5 years I was having good weeks, then months, then a relapse, which was more dreadful than I could have imagined as I had hoped so much that I had seen the last of it.

    I suppose that it took about 7 years before it was gone and I am now as fit, able, and tenacious as I ever was before I got it. The knowledge of ME and its horrors will never leave but it is becoming a more distant memory and I thank everyone, including my husband, so much that I pulled through it, but I did and I know that it can be done for a great number of people.

    Good luck to everyone and just keep hoping and resting.