Is this my lot in life???

Here is a short account of my ME history. I reckon nearly all of the first ten years were essentially lost years with the next ten becoming gradually less lost and more normal and pleasant.

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It was an idyllic life for a young father reccon with a lovely wife and three young boys. Up early to tend the horses, walk and milk the goats. Family breakfast then off to school and on to the office. Then collect the boys and off home to walk the goats and tend the horses. Weekends just as packed. It was a great action packed semi rural life in our large old house requiring endless maintenance and boundless energy. My energy fell a little short when the wheat and barley fields were sprayed. That should have warned us.

Then came the Wilson era. Mr Wilson. infamous for his "pound in your pocket" devaluation speach. We could no longer afford our lovely big old house in its large garden and stables and outhouses. We sold up and moved to a smaller counrty house twenty miles the other side of town.

It was not long after that I went to the doctor. It is one of these "space age viruses" he pronounced. Code for "I have not a clue what is wrong with you". As I didn't get any better he referred me to a chest clinic. There the consultant looked at my X-ray which had a number of bright dots sprinkled over the chest. He suspected Sarcoidosis and a biopsy proved it..

He put me on a "small" dose of Prednisolone (22 mg daily) for three months. He assured me with two or at the very outside three treatments of three months he would have me right. From the first pill it was a disaster. Worse, I had not yet learned to say "No" to a doctor. The fatigue grew worse, I generally felt unwell, brain fog came and deepened, memory became more and more patchy, logical thought more and more impossible-at its worst, I had half an hour first thing in the morning-, the smallest decision could take a day, or two or three. Speaking took immense effort, getting a couple of words out at a time. Sleeping was uncomfortable as I frequently awoke in a panic gasping for breath

One time when I was about 40 I was walking with my father-in-law. He was about 70. I just could NOT keep up. I felt that I must be what an 80 year old feels like. My legs would not go fast enough. And I was cold although I was wearing my wool overcoat in the middle of  August..All that was spread over ten years. To me it is just a vague, patchy memory of deep, deep misery. Our GP fairly early on had told my wife that such illnesses sometimes happened and she should not expect me to be around in about two years. Even in that my doctors were not correct. But pill was added to pill. None helped. At the end of this nightmare period I was attending the professor of psychiatry from the local top rate university. He listened/waited patiently while I struggled to get out the words to answer his questions. He added a large pill to my already large selection. But he wrote to the lung consultant begging him to stop the treatment. The Professor at least did not think I was a nut case or that my troubles were all in my head. Somehow when attending the lung clinic I managed to decide. I told the consultant I would not take any more of his pills. "Is that fair to me." he replied. "If I do not come back, would that be ok?" I said.  He seemed happy at that. 

We, my wife really, had been doing some research. It was difficult. There was no web that provides so much help today. We talked to friends and tried homeopathy. I got some help from homeopathy. We were also told that if all else failed, and we felt all else had failed, we should move to a different area. So we sold again and moved into town. That was the beginning of the long slow road to recovery. My wife took advice from a dietician. So I had a short period of a diet of filtered water, boiled brown rice and pears. Why? apparently few people react to brown rice or pears. Then one food at a time was added. If I did not react that food was added to my diet. If I did it was excluded.

With my new diet I gradually, very gradually made progress. When I was making progress it was then obvious when a household chemical or cosmetic upset me. Any offender was excluded. It also became obvious when I became affected by chemicals outside the house. I became very wary of any scent of chemical including Cosmetics. They may smell nice but I could taste the chemical and still can. With continuous care and perseverance I regained an acceptable level of "normal " health. It had taken most of another ten years. After that I gradually became more confident and little by little I found I could tollerate nearly everything that I had once excluded. I was almost normal once again. Sadly, I have few memories of my boys growing from primary school to their mid teens'.

The major lesson I had to learn the hard way was never to push myself physically. Wherever I did there was a long pay back penalty of exhaustion. I still cannot afford to push myself. I have to think very carefully whether the object is worth the cost.