CFS/ME

Hi Paul,

Stay positive about the condition and it helps a lot.

I have been through the various stages of the condition several times and lost a couple of fantastic careers also because of having ME and it sucks for sure. The medical profession are quite poor at looking after the ME CFS patient in general I have found.

In the past 20 years of having ME I have found pacing the best method of recovery and getting out of a wheelchair walking again... I still have relapses and end up crashing out and taking  3-4 days to recover from an activity that was just a little too much for me.

However, I refuse to be an invalid and have ME control my life, so I push on continuously aiming for whatever goal I have set myself.  Just a simple goal of perhaps doing some gardening or a short walk around the supermarket, instead of waiting in the car. From what appears as easily achieved goals to anybody who is able-bodied, they can be giant achievement to me. Building on these has enabled me to have a better quality of life.

I haven’t managed to ride a bike in the past 2-3 years but it’s a goal to do it this summer, just a short ride to the end of the street and back at first… but I know its achievable and I can build from there, I expect to overdo it and crash out but that’s just part of having a goal to aim for isn’t it.

I know people who have not been very positive about some form of recovery and spend a lot of time in the “pity me” category, which is sad. I know I did this when I first became ill and slept for 20+ a day a key phase was “but I’m ill” it wasn’t until a family member said to me “If you were a boxer you would expect to get knocked off your feet in the ring from time to time, but they get up again and fight, that’s what you need to think about doing” after a few weeks I thought about it and decided I would fight this ME… and I still do.

Good luck with your recovery, pace yourself and have achievable goals lined up and expect to have set backs, then you don’t get too down as you’re ready for them to happen. There are plenty of people on the forum, who will be happy to chat with you about ME or CFS and most of us have some useful advice we have found out or can offer about living with ME/CFS.

I don’t expect I will see a “medical cure” in the next few years for the condition… so I’m not sitting back hoping or waiting while my life passes me by, I’m just trying to manage and get the most out of my life, which is the only advice I can offer someone in the same boat as me.

I know 25% don’t recover much as well, and are bed bound being feed via a tube etc… It’s upsetting to think about them, and I hope they have the strength one day to recover even just a little.

Hello Paul;  I believe, and understand how you are feeling, as I too find it hard to believe that I was once a very active person, who held down a very responsible job, while running a household of 5 children, plus being the perfect wife etc...and now there are times that i  just don't care if I don't prepare the evening meal/do the washing/ironing etc....and yep, the 1 son and husband don't always understand this, for as I have said, they always had it all done and all was ready when they expected it.   Today was one of those days...I had to do some driving (which always upsets the body)..hence, when I arrived home...I went to bed for 3 hours, and was Very cranky, which my son got offended at because I actually snapped, which they are not used to...hence "what's wrong with Mum today".  I am sorry that your marriage broke down, as it is at times like these that we feel the marriage vows that we took "for sickness and in health, for better of for worse" always come into my mind when my  husband does something ,  and I know that he is not the same man that I married, and yes there are times when I think..what the, why am I still here?  but that's life...and what we chose.  I also understand your embarrasssement re your walking assistant/roller, as I know that I too should use a stick when in the shops (when I venture there), but grab the first small trolley that I can find, to help me, as I feel everyone is watching me...I do see them look at me, for I have some parts of my body strapped with Sports Tape to support the muscles (physio puts it on for me, after I have physio on my muscles).  remember that there are a lot of us out there, it seems (that's how I found this forum....by asking the question,"why is CFS/ME so prevalent these days"?   as it was not recognized by most physicians 30 years ago...and I am still seeking the answer to that question, and have not found a satisfactory answer...  keep in touch.  Bron

Hi. I'm also fairly new to these forums. It is hard coping and I'm still coming to terms with my cfs/fibromyalgia diagnosis.

My family tend to forget I get tired so quickly and my daughter wants to do things all the time in the holidays and it's hard to say no.

I too suffer with pain in my legs. They feel heavy and weak and ache like I've run a marathon.

It's good to know there are others like me (not good that they're suffering) and we are not alone...

I am sorry you have ME. I cut a great swath out of my life. I regard myself as living after ME. That is mostly true. I still have to pace myself carefully. If I over do physical exertion I am washed out for 2-3 days mentally and physically. I have posted my testemony four times in this group. To save you searching here it is again. Wishing you a careful and progressive recovery.

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About 1963:: 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 onyye 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 of two to three days of being washed out..