ME/CFS

I think the thing is to get my head around what is happening.  I am not dying, but I feel that at the moment its like a death sentence in respect of mourning my job, alienating my family and friends as I am not sure they understand, as at the moment I even have difficulty understanding.  I tried housework yesterday, mind over matter if you you like - and a fingers up to the specialist who diagnosed this in a way.  I probably do not have to tell you that a little while into it I had a severe replapse, dizzyness, weakenss in muscles, shaking and now severe nausea - ended up laying in my room on a wonderful sunny winters day.  Mind of matter simply did not work.  Last night I cried myself to sleep.  I can't tell my boss yet what the real diagnoses is, I have just said I am recovering from illness and it is taking longer due to a low immune system.  It is not that I do not want to tell her it is simply that I can't figure this out in my own mind to let the words out to tell her.  I think it will make more sense when I get it actually in writing from the specialist.  I am so grateful to you for replying.  Like so many with this I am probably one amongst many - however I feel so alone and bereft.  I hope I do not offend anyone in my post, particularly reference to dying etc.,  I know that I should be thankful that I can work my way through this eventually.  So apologie to any persons I may have hurt or offended.

I really don't think anyone who has ME is going to be offended because we understand and have been there.

As for a low immune system, it's more a compromised immune system that's over working. Just my opinion after learning as much as I can about it and the way my own immune system is working.

A lot of people with ME develop food sensitivities/allergies etc, that's the immune system firing off when it's not supposed to so how can it be 'low'?

I shall be happy to find my testimony and repost it here.

Do not be afraid of mentioning death. Very many, on this forum myself included, have had a very upsetting diagnoses and had to confront their own mortality. It is a healthy reaction and once faced openly life can move forward more comfortably. I came to this forum because of prostate cancer, a very troubling diagnosis. However, ME in effect robbed me of at least ten years of life. Ten precious years when my sons were growing up.  Which is really worse?

Hang in there and do not push yourself.

It was an idilic life for a young father with a lovely wife and threeYoung 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 homes. 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" delvaluation speech. 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 country house twenty miles the other side of town.

It was not long before 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 Xray which had a number of bright dots sprinkled over the chest. He suspected Sarcoidosis and a biopsy proved it.

He put me on a "smalll" 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. 

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 like an 80 year old. My legs would not go fast enough. And I was cold although I was wearing my wool overcoat on a hot  August day. 

All that was spread over ten years. To me it is just a vague, patchy memory of 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 next 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 mostly, had been doing some research. It was difficult. There was no web that provides us with so much help today. We talked to friends and 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 y diet. If I did it was excluded. With my new diet I gradually, very gradually made progress. Once I was making progress it was 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. With unremitting care and perseverance I regained an acceptable level of "normal "health. It had taken much 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 and fatigue. I still cannot afford to push myself. I have to think very carefully whether the object is worth the cost.  

I can take on board everything everyone is saying.  I too have reaction to food to include getting funny blister/itchy skin on my hand.  When I have a reaction to food it can either make me itchy all over or affect my stomach - you can guess what happens there.  It is so strange it is as if my body has just had enough of the stress I have dealt it over the past few years (or rather recent situations with children and mothers illness and then death - may have triggered all of this along with viral infections oh and studying for last 13 years obtrained 2 degrees - now at what price!).

I am coming to terms with this very slowly.  Have always thought like many it is mind over matter.  Well I can tell you it is not.  I have looked at all your posts and the common factor is time and rest.  It seems that our bodies have finally said enough and take it easy.  Something I am still fighting with or rather coming to terms with.  I do wish everyone well here.

I am interested in you getting funny blistery skin on your hands. I suffered that from before I can remember. Just imagine a boy who did not like to get his hands dirty. No one understood just how very, very uncomfortable my hands frequently became. That was worse than the itch. I used N*v*a until I could not tolerate that. I now avoid all lanolin products. The solution emerged about 10 years ago. The main culprit is soap. Now who would have believed a boy who said he couldn't use soap.   

You mention 'mind over matter'. I am fearful that USA are about to officially designate CFS/ME as just in the mind. Where USA goes UK is not far behind. This when we seemed settled and secure that CFS/ME are physiological ailments and need medical treatment as such. Self help does seem the main route to recovery. There are no quick fixes.

Thank you for your apology for your late reply. I expect we all understand how we all have bad spells and wait patiently. Well, patiently and anxiously.

Wishing you steady progress to wholeness.

Please don't look at it as a price you've paid. I over studied too, had a terrible virus, and a stalker for a year that caused me to go literally 'insane'.

I know this may seem hard to take in at the moment but look at is as a rest, a time of pumping your body full of nutrients, re-thinking things and then coming back as a new, more empowered you, however long it takes?