Dramatic Recovery....it worked for me

Discussion in 'Fibromyalgia Main Forum' started by bensug, Jun 5, 2006.

  1. bensug

    bensug New Member

    I'm posting this to give some hope to fellow sufferers....a precious commodity in CFS! I have had an extremely serious case of CFS followed by an equally dramatic recovery.

    I had an slightly unusual entry into the disease. Following a long period of stress related to an extended breakup with my fiance, I threw myself into a serious exercise regime, culminating in me going to lift weights the day after a Scuba dive early in January of this year in the Caribbean. During lifting the weights I felt a sudden weakness, which worsened over the next few hours, followed by the onset of tingling in my arms and legs. I was rushed to hospital and the initial diagnosis was the bends, even though it seemed extremely unlikely. I was airlifted to another Island and given decompression treatment.

    The problem was that I never got better, and in fact continued to to deteriorate...I found I could not walk more than a few yards without feeling extremely ill and fatigued afterwards and had balance problems, sensitive hearing and vision, and other strange symptoms not consistent with a diving accident. Eventually I was air ambulanced back to the UK where I spent weeks in hospital with no diagnosis. I had every blood test and scan
    that you can have, and still nothing was found. Meanwhile my condition deteriorated and I experienced almost every symptom you see on the CFS list and more. Eventually I could no long even sit up at all, had bad visual problems, had breathing difficulties, extreme cognitive dysfunction, and then totally lost the ability to speak. I could longer read, watch TV, or listen to music, and could hardly turn over in bed, and was in extreme pain and discomfort, to the extent where I had thoughts of suicide...although I couldnt see how i would have the strength to do it. I eventually diagnosed myself with CFS/ME, and gradually the doctors came around to my opinion. I was sent home to live with my parents, but there I deteriorated further, and was very quickly sent back to hospital with severe breathing problems and heart irregularities. Worst of all my mental dysfuntion had deteriorated to the point where I could hardly remember my own name, and was experiencing amnesia, and time loss. I hardly felt like me anymore, and lay with a mask over my eyes, and wax earplugs 24 hours a day. Finally my blood circulation became so bad that the blood literally was draining into whatever part of my body, and brain was lowest, causing me to feel incredibly ill and fall unconscious unless I continually turned...a struggle in itself. All I could do was just hang on and hope for some hope.

    While in Hospital there was a split in attitude between doctors who believed that CFS is a physical illness and doctors who believed it was "all in peoples heads". Naturally I fought against the psychological diagnosis - I have never experienced any psychological problems, and was the type of person who would always push myself physically and could overcome any physical discomfort or fear. Finally I came under the care of a specialist brain rehabiliation consultant. He was extremely understanding, and said that he believed I did have a central nervous system disorder, and that he believed that there was at least some psychological element, but that this psychological element was causing real physical dysfunction. He said he had seen people who had accepted this diagnosis experience dramatic recoveries before. At this point my resistance to the "mental" diagnosis crumbled. My doctor explained that some of this may be due to blocked and unresolved feelings - my strength of will had been blocking these feelings from coming out and the long term stress of this had collapsed my nervous system. As "touchy feely" as this sounded to me, I was desperate for a way out and to be honest if I had been diagnosed as a dog I would have barked and wagged my tail at that point!

    Almost immediately during my next "crash", instead of grimly hanging on and trying to distract myself from the terrible symptoms until they passed, I reached into myself and tried to just let go and feel everything I could. Immediately I started to feel the extreme fatigue and illness mixed with feelings of depression and grief. I don't know where it came from but obviously alot of it was grief and mourning for my lost health and mind. During the next crash a few days later the feelings were even stronger, but the fatigue and illness were much lessened.

    Finally the physio's came and put me on a treadmill walking extremely slowly. After a minute, they stopped and I lay down again, and then they told me I had walked 50m...the longest by far in the four months since my crash. The next day I walked 100m. I still felt terrible and was totally bedridden, apart from this brief period, but suddenly I began to imagine that I could make improvements and not just go downhill further. From there my progress was steady each day, at around 25% further each day, but cumulatively it was dramatic. I continued to experience terrible relapses including some kind of brain siezures, one sided paralyisis, and severe visual processing problems etc etc. But by the end of one month I was well enough to walk around the lake outside the hospital - a three mile walk. At this point I moved into my own apartment and within two weeks was spending my whole day out of bed. Now a month after leaving hospital, I am walking up to ten miles a day, swimming, cycling, running, and lifting weights again, but doing it all in a very "take it easy way". My visual and balance problems have improved dramatically, I am speaking again, and my mind has started to come back. I am not back completely to normal yet and still am not considering working, but nevertheless I could never have imagined that t hat I could have come this far so quickly.

    My reason for writing this is not just to celebrate my own achievement, but to ask fellow sufferers to at least consider the possibility of improvement through taking a different psychological approach. By "psychological" I do not think for one minute that this disease is like a "mental block" which can be overcome easily. Instead I think that illness is a dysfunction of the central nervous systems "software", and that real brain changes do cause the mental and physical dysfuction, but they are not necassarily permanent. I am sure that the immune system is involved also, but remember that the central nervous system plays a significant role in regulating the immune system....nothing in the body is seperate and independent. While CFS is a complex disease, and all of you may have a different etiolgy, my opinion is that you MAY be able to help yourself in the way I have. Really I have experienced the worst this disease could throw at anyone, and was sure I was going to die or be a vegetable for the rest of my life. If I could come back from that, it is at least possible that you may also.
    [This Message was Edited on 06/05/2006]
    [This Message was Edited on 06/05/2006]
  2. springrose22

    springrose22 New Member

    It is doubtful that you had CFS in the first place, but I sure am glad you are better. Good for you! Marie
  3. elliespad

    elliespad Member

    What is the time period between diving/weight lifting weakness, and starting your phsio treatments? I too am very happy you are recovering so nicely.
  4. bensug

    bensug New Member

    It was about four months between my first symptoms of weakness and fatigue, and starting on the physio. To clarify further, after about one month I was "tortured" by physio's who did not understand my condition in the first hopsital I went to with the usual resulting relapse. I am sure everyone is familiar with this - I was basically told...there is nothing wrong with you...get up! I was then thrown in a taxi, and sent on a one hour car journey when I had not been able to even sit up for more than 5 minutes!

    The difference in my treatemnt at the next hospital was partly due to the fact that I was treated by "neuro-physiotherapists", who had some experience with M.E. and who were sympathetic. Although my illness was associated with diving and lifting weights, when I look back now there were several periods of unexplained illness and fatigue in the previous six months, so this was something that was on its way. I realsised I could never have had a scuba diving accident at all, since my dive had been to 2m in a swimming pool!

    The thing that was most difficult was finding a way to break out of the cycle of activity/relapse which everyone with ME seems to experience. I am still not entirely sure how I did it as for four months I simply could not break free of this, and it seemed impossible that I ever would.
  5. Tantallon

    Tantallon New Member

    I have read your thread twice now and am having difficulty understanding what process your mind took with regard to your illness/symptoms.

    Was it acceptance?
    Did cognitive behaviour therapy play a part?

    I too believe that the brain has some control over our illness and to that end I ordered The Edge Effect, which I recieved last Friday, so I haven't had time to read it yet. I tend to get really annoyed when anybody mentions the word 'psychological' with regards to this illness but I am open minded and accept that the way our brain reacts may have some bearing on this DD.

    Anyway I'm glad that you are getting your life back, and you are making progress.

  6. Marta608

    Marta608 Member

    I completely believe in the mind/body connection to illness. I'm delighted that your found your way though. Of course there will be skeptics to anything related to the mind because we're all so sensitive to our illness being thought to be "all in our heads". But you know, our brains are in our heads and no one completely understands the brain yet even though it controls everything else!

    I do know too that a seretonin/neurotransmitter disfunction can do weird things to the mind and the body. The chicken or the egg question again, right?

    Thanks for taking the time to post. It gives me hope that my tiny bits of increased stretches, deep breathing and Pilates - and I do mean tiny bits except for the breath - will eventually get me where I'm going.


    ANNXYZ New Member

    It sounds like you are still pretty sick if you are not considering working . However , we are all grateful that
    you are making progress . I hope this is the key to help you to find good health .

    You mentioned that you " let go and felt the emotions I was blocking ".

    It sounds like your doctor was implying that you were having autonomic conversion disorder . you took his input much better than I would have , and I hope you are on to something .

    I do not think I have repressed anything , nor do I believe there is anything in my brain that wants to remain sick . I have enough common sense to know that I have felt like I have had an infection from Hell for 10 years , and my fevers , sore lymph nodes , all over aching and chills seems to bear this out .

    You state that " you might want to "help yourself the way I have ". Your formula for this however is not clearly stated . Please know I believe you are sincere and that
    you mean well.

  8. bensug

    bensug New Member

    Trust me you are not the only one who got (and gets) annoyed when people say its "psychological". Nobody in their right mind could suggest that anyone would choose the kind of life you have when you have this disease. It is also crazy to suggest that ME is some kind of dysfunctional mood state....I have been in a bad mood before and certaintly was still able to walk! Before M.E, I was a professional businessperson, with a degree in Mathc & Physics and an MBA from a top tier business school....ie. the type of person who would be very unlikely to accept that I had any psychological problems.

    It is difficult to put into words exactly what the psychological process was which enabled my recovery but I will try, by contrasting my mental approach up until the day I started getting better with what happened afterwards. For four months from the day I got sick I tried my hardest simply to get up, walk and push through the illness....it was a disaster - I kept getting a little better for a few days, then overdoing it and crashing back lower than I was before - and overdoing it eventually meant sitting for 3 minutes more than once a day!

    I found the extreme symptoms very frightening, and also felt very disheartened every time I made progress, only to fall back down. But most of the time, I just battled on bravely and tried to keep my mind off the symptoms, and the feelings of desperation that most people feel....before this I was running triathlons, and now I couldnt go to the toilet or shave by myself...pretty depressing.

    So what changed? Firstly after a series of insensitive and unhelpful doctors, the Brain Injury specialist I met turned out to be a really nice and intelligent person. He explained to me that in his mind what I was undergoing was a "software problem". He said that since your nervous system (which includes the brain) controls everything in your body, if something goes wrong with the processes occuring in it, you can experience almost any symptom, particularly as the nervous system interacts with all sorts of important processes including respiration, and the immune system. He explained that since there were no "hardware" faults in my brain...ie no brain damage, the problem lay in the software. The messages were somehow getting scrambled. He then said that he believed that when something goes wrong with part of your brains software, particualrly in the unconscious processing of emotions, the brains recruits part of the rest of your brain to compensate, which can screw up all the systems in your brain and thus your body. Then, when these systems start screwing up, the stress this naturally causes exacerbates and compounds the underlying problem. Damage does occur in the brain, but not at the level of individual cell damage but at the level of the systems which govern information processing and signal sending. In effect, his view was that ME is like a brain crash. This explains the type of fatigue experienced by ME sufferers...it is fatigue of the central nervous system rather than the muscles themselves, thus it feels entirely different. He also felt that the process should be reversible, but that the continued stress of the disease itself kept people locked in.

    For the first time I saw that a "psychological" explanation was possible in this sense. My response was to try to stop "grinning and bearing the illness", and instead allow myself to open up and feel anything that I might be blocking. The day after meeting with my consultant, I tried to walk again...overdid it and collapsed with fatigue once more. This time however, I tried to reach for emotions as well as physical feelings. I found that mixed up with the usual awful illness and fatigue were feelings of grief and depression. I also stopped trying to take my mind off the physical feelings and instead just let myself experience them. For first time I guess I really plumbed the depths of my horror at what at happened to me rather than trying to be positive, and I used some sad music to help bring out the bad feelings. Afterwards I felt a little better physically though totally washed out. Again I crashed a few days later and again I tried the process...this time there was far less fatigue/illness and more depression and grief and crying. Unfortunately a side effect was that each time I did this my cognitive functions underwent further meltdown. I progressed in a few days to the point where I could walk about ten yards before I got the fatigue reaction, but couldnt get any further without feeling incredibly ill and suffering.

    When the neurophysio's came to put me on the treadmill I was terrified of being tortured again, but they were extremely kind, and said I could go as slow as I wanted and for as little time as I wanted. But what they did do is cover up the distance indicator. I walked incredibly slowly, and as soon as I felt unwell I stopped. They then revealed how far I had gone.....to my shock I had walked 50m. This convinced me that something more than just a normal physical illness was ocurring here. I realised that the only reasonable explanation was that my very understandable fear had been holding me back, not in a normal way, but by literally filling up the very limited nervous system processing capacity that I had left.

    The next day I was able to walk further again, and then again the nextday. I did experience significant relapses every other day, and they were very frightening and in some ways worse than before, but each day they told me I didnt have to do any more than I wanted to, and covered up the distance indicator. Without even meaning to I just kept going further and further each day, until after a week I became convinced that I was not going to crash straight back again.

    I want to be clear that my fear had never held me back before this from trying - like many ME sufferers, i am the type of person who pushes through fear. The difference is that whenever I tried to push through my fear in the first part of my illness I ended up crashing. Also i think that even when I felt I had no fear, the fear came out physically in the form of illness and fatigue. I think that because I didnt know how far i was walking on the treadmill, and because there was never any fear of being "stranded", the fear factor was taken out of the equation. That did not mean i was suddenly cured - what it meant was that I was left simply with the underlying deficit in my brains capacity to process motor movement. What I found to my surprise was that this limited "bandwidth" could be increased, not overnight, but by about 25% on average a day. Once I had learned to walk 100m on the treadmill I felt no fear in walking the 50m to the day room in the hospital, and thus my world started to expand. Each improvement improved my mood and confidence, and although the relapses kept happening, I realised that I didnt have to go back to square one each time, although i did reduce my activity a little. I also began to believe that the relapses would not be permanent, and this kept me going.

    I don't want to paint this process as being easy - it was incredibly difficult, I paid huge prices emotionally, physically, and mentally along the way, but I think that once the process started I knew I had to keep going because I never wanted to reurn to that pitiful state I had been in. I kept up the process of opening myself to the hurt and pain that all of this was producing, but what I also did was get rid of my old "symptom diary" which I had used to keep track of my activities (to learn what made me ill), and instead started keeping a "recovery diary" where I was only allowed to write down the progress I had made. When I got down and disheartened by a relapse...I looked at my first few entries and remembered just how far I had come in such a short time.

    I guess all of the above may be somewhat confusing, but if I could summarise I think that the key lay in overcoming the fear of opening up and allowing myself to truly experience the full emotional and physicall pain the the illness produces, rather than block it out and gamely struggle on. Paradoxically "giving in" rather than fighting seemed to improve my physical symptoms even though it made my emotional state much worse....for a while.

    I know what I would have felt had someone told me this story when I was desperately ill and struggling....I simply would not have believed that something as touchy feely as "opening myself up to my feelings" could have helped me overcome this awful illness, and I would have been highly sceptical. But the fact is that for me at least, this process opened up the door to allowing the "graded exercise" method to actually work rather than just result in further illness.
    [This Message was Edited on 06/06/2006]
  9. bensug

    bensug New Member

    Thanks all for reading my post. Firstly let me be clear that I do not believe that ME is one disease - I think that there are probably multiple causes and thus what worked for me will probably not work for most people. But let me clarify once more that i do NOT believe that it is psychological in the sense that a conversion disorder is....in fact I asked to see a psychiatrist when the first doctor said this was all in my head, in order to get the defense of a professional opinion - the shrink said there was no way I was crazy, and that I did not have any of the characteristics of a conversion disorder patient. I don't believe that there are many ME patients who have "unconscious needs to stay ill". Its pretty offensive to be told that by doctors as I am sure all of you can imagine. What I am saying is that in my case, severe emotional stress over a significant period probably had a damaging effect on certain very important brain processes....this is probably not a revolutionary thing to say....put stress for an extended period on any bodily system and things will start to go wrong. At that point you become so ill and have such extreme symptoms that anyone would find it difficult to cope with it. To answer the doubts expressed above, I don't believe that I had unresolved feelings which were causing this, but I do believe that the stress of a protracted and difficult breakup (amongst other things) led to some kind of damage. I also believe that my way of dealing with the illness, while not directly responsible for keeping me ill, was a factor in preventing my recovery. If this was not true, it would be very difficult to explain my sudden move to recovery after four months of continual decline.

    I certainly do not believe that people with "my version" of this illness can be cured just through changing their thinking - the brain and nervous system in ME are "damaged" and need "retuning", and a physical excercise programme is really the only way to train your nervous system back in to behaving normally....the mental part is simply about removing the barriers which prevent this process from working. I have had to do alot of neuro rehab exercises including vestibular rehab and balance exercises...these take time to work....there is no overnight miracle.

    Its a truly horrible and real physical disease...I know I felt much worse, and was more disabled physically than most of the terminally ill patients I shared rooms with in the hospital. Most of the very ill patients won't even be able to read these posts so give a thought to them as well.
    [This Message was Edited on 06/05/2006]
  10. ldbgcoleman

    ldbgcoleman New Member

    I am recovering and I attribute at least part of getting better to a positive mental attitude and refusal to give up until I found a solution. Geting your mind in the right place is helpful in life in general so what can it hurt??
  11. bensug

    bensug New Member

    I tried all sorts of things, diet, supplements (with awful allergic side effects), acupuncture, a chiroprator etc before taking this approach. In the end my feeling is if an approach has a 1% chance of working but there is zero cost, that has to be better than the zero percentage chance of doing nothing, with zero gain.

    [This Message was Edited on 06/05/2006]
  12. ANNXYZ

    ANNXYZ New Member

    to be MANY people here who have have tencious commitment to recovery along with a postive mental attitude , who are NOT getting well or improving .
    A positive mental attitude does not cure every disease , nor does one's didication to pursuing good health.

    Nevertheless, it is always good to hear that a person believes they have found a key to assist them get better .
  13. bensug

    bensug New Member

    I agree with you....I spent months "detirmined" to find a way to get better, and really put every effort in to be positive and not lose hope....none of this helped me and in the end I was just lucky to stumble upon an approach that worked for me...the last thing I would want to make people feel is that this disease is their own fault for not being positive or detirmined enough .....that attitude would have really pissed me off during the period before I started recovering!

    I don't think there should be a pressure on people with ME to "be positive". I hated my own family putting pressure on me not to be negative when all i was trying to do was explain how i was feeling. I think it's ok to lose hope sometimes with this illness - we are only human - as long as you don't lose hope of hope. Ironically, for me (and maybe me only) the kick start to getting better was giving up fighting and positive thinking, and just letting it all wash over me.
    [This Message was Edited on 06/05/2006]
  14. Michelle_NZ

    Michelle_NZ New Member


    Interesting information, thank you for taking the time to post it.

    I agree that a positive mental attitude and psychological "tools" can help people manage their way to improved health, including those with CFS. However, I don't believe that you can "cure" CFS in this way.

    To receive a diagnosis of CFS, the symptoms must be present for a minimum of 6 months. The primary symptom is unrelenting fatigue, but there are a number of other neurological, physical and cognitive symptoms that must also be present to (for 6 months) to get the CFS diagnosis. It sounds like you were sick for about 4 months before starting to recover so I think it unlikely that you had ME / CFS.

    Also, in 70% of CFS cases, the onset was due to a viral infection - this provides heavy evidence for a biological, not psychological basis for the illness. And the latest research on gene expression for CFS type illnesses is showing us that people who develop CFS seem to have a genetic predisposition.

    Once again, thanks for posting, it is useful info, and its great that you are getting better.

    Kind regards

  15. KateMac329

    KateMac329 New Member

    First of all WELCOME to our community!

    We all are very supportive here and I for one have found some friendships that I cherish deeply. The support I get here is so wonderful and it feels good when you have people who understand and who are by your side in good times and bad.

    There are SO many people out there who don't believe in these illnesses so having support here helps!

    I also want you to know that I am very glad that you have found something that is working for you. Many of us have been searching a long time for something to help us recover.

    I completely believe in the mind body connection! I try my hardest to have a positive attitude and focus on healing from hurt in my past.

    Do I think emotional pain soley made me sick? No. AND I know that is not what you are saying so don't hear in my words that I don't believe you. I do!

    I think my problems with depression and some traumatic and stressful events from my past have attributed to my illness(s).

    Have you heard of Dr. Selfridge? She has a pretty interesting book on how our bodies have a chemical reaction to mental pain.

    I know I am not explaining it right because I have not studied her theories in detail. I have many books on all these illnesses and she is in my stack of books to study.

    Thank you for sharing your thoughts and what is working for you.

  16. Forebearance

    Forebearance Member

    I think I understand what you are saying.

    I have phrased it a bit differently for myself. I describe it as acceptance.

    Or as coming out of denial about my CFIDS and accepting how sick I really am and how bad I feel and feeling it to its full extent.

    Or as thinking 'This is real. This is my life. Feel what's happening.' Someone else described it as 'Do what's in front of you.'

    Maybe a good description for your philosophy would be something like 'radical acceptance'.

    Maybe there's something about acceptance that restarts the brain.

  17. Tantallon

    Tantallon New Member

    The start of your illness sounds very much like mine, extreme prolonged stress, I also have problems dealing with 'emotional' issues and tend to block off this side of myself and 'shut the door on them'. I know that I should confront the anger and resentment I currently feel about my present life as opposed to my past one, but it is difficult for me to do this.

    I am a very positive person, very self-assured and confident and I have always been the problem-solver in my immediate circle of family and friends, consequently I am having difficulty with this illness as I cannot 'solve' my current situation and this feeling of helplessness is very alien to me.

    Perhaps you are correct about letting buried emotional debris out, that is something I have also thought might help me, but my refusal to accept some 'psychological bearing' on this illness has always been a problem with regards to this. Maybe now is the time to change this line of thought.

    You have certainly provided me with another way of looking at things relating to this illness.

    Sue[This Message was Edited on 06/06/2006]
  18. lvjesus

    lvjesus Member

    but in reading your post titled "The psychological process" I hear 2 things in your details that make good sense to me, if I am hearing you right.

    The first point is that initially you "fought" your illness by pushing through regardless of how you felt, which only made your worse. That is proven to be true when we push beyond the limits of our illness (I have FM incidentally).

    The second point is that you started to "get better" when you gave in to the illness in the form of resting when your body said "ENOUGH". This also makes sense and, for me at least, I SOMETIMES feel better when I give in. (and sometimes don't).

    I will give you an example. I am currently facing EXTREME fatigue nearly every day, which is a dramatic increase from what I have been having.

    I have to push through until the end of the work day (not accomplishing much except to physically be there after a certain point some days though) and then go home and crash on the sofa for a time.

    SOME nights this restores me enough to be able to get up and do something before bed - something small, like clean up after dinner or put a load of clothes in to wash or play cards with my daughter.

    So in this example, I "gave in" to my illness and rested for a time and was then able to get some mental clarity and physical energy. Had I continued to "push" with no rest period, I would have felt worse and worse until I reached the end of my energy rope and crashed for the night.

    Make any sense? At any rate, that really is not a cure but an adaptation to my now physical illness (which is real regardless of it's origin). I am not refuting your statements, just trying to see if I understand what you are saying.

  19. lvjesus

    lvjesus Member

    I had a lady at work suggest that if I work on having a more positive attitude and, get this, improve my posture it would help me! LOL

    Okay everyone, now sit up straight! Hey, we're all cured! NOT!

  20. bensug

    bensug New Member

    Thanks all for taking the time to reply. In response to a number of posts...firstly I really hope this is not just a "remission"! I believe it isn't though because I experienced several mini recoveries on the way down, and this recovery is on a totally different scale. Another point raised by fellow members was do I really have CFS? This is a good question and of course in the light of the fact there is yet to be an accepted diagnostic test you have look at the "normal citeria" below....

    "In general, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria:

    1. Have severe chronic fatigue of six months or longer, with other known medical conditions ruled out by clinical diagnosis, and
    2. Have four or more of the following symptoms at the same time: significant trouble with short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, pain in several joints without swelling or redness, headaches of a new type, pattern or severity, unrefreshing sleep, and malaise (symptoms such as discomfort, weakness, or nausea) lasting more than 24 hours after activity. "

    I had all of these problems in a very severe form except for the sore throat, and many more that are not on this shortlist but which other sufferers of ME complain of. This difference, as was pointed out is that I started getting better earlier than the six month guideline, although I was given a "preliminary diagnosis" of ME by my rheumatologist. I also tested positive for the epstein barr virus, which may or may not be relevant. More than this I guess was that I got all of these symptoms before I knew what ME was, and the posts of fellow sufferers of the type of illness they were experiencing were the only ones that struck any chord with me, particularly the memory loss and brain fog. There really is no other illness which causes such an enormous constellation of symptoms except perhaps for AIDS, and possibly MS, both of which I was tested for and got ruled out.

    My guess would be that the similarity in symptoms between ME sufferers suggests only that the same areas of their brain/nervous system are being affected. What has caused this damage/dysfunction may well be different in each case, in some people it may be a virus, in others it may be an autoimmune response, in others a long term stress response. It may also be that what we all have in common is a genetic susceptibility, and that stressful events or viral illness etc simply have the effect of "switching on" a faulty gene which keeps this illness persisting. So I think its possible that multiple triggering explanations are possible for the same resulting condition, so we should not be too quick to reject one cause or another. There are many routes into ME, and so there are probably many routes out.

    I guess the only thing I have become black and white on is acceptance of the "mind body" connection. In fact now I almost laugh at the idea of the two being seperated....I am a hard nosed scientist, not an arty type, and for me "the mind" is simply "brain processes", and brain processes are just as much a part of your body as blood circulation. That doesnt mean I think anyone can think their way out of this disease. In fact for me it was the exercise programme which got me better - each improvement in my physical capacity led to a decrease in my overall illness symptoms. In my opinion the mental emotional work I did simply removed a barrier to letting the physical therapy work. Nor did I just do graded exercise - I did a variety of things including vestibular rehab exercises, balance exercises, core exercises, and also gentle bouncing on a trampoline to help overcome my severe orthostatic intolerance (I couldnt sit up for more than a minute because my blood drained out of my head). I still do all of these things...I am not 100% well yet, and the mind is lagging a little behind the body, but each day I can go just a little further, where before this progress always got taken away from me.

    I guess really the only interesting and perhaps inexplicable thing about what happened to me is that for four months I tried so hard on the physical front and just made myself more ill. I went through the familiar cycle of activity/relapse so many times I lost hope of an exercise programme ever working. And then one day, it started working.

    There is also a difference between myself and many fellow sufferers in that (thanks to my breakup!) I don't have anyone else to worry about and can just focus on my recovery. I am not working yet, and don't plan to do so until I have given my recovery some time to bed down. I have come back from what was nearly my deathbed, and so I am very happy with my current health relative to that, which is what I compare myself to now, rather than how I was before (constant activity and stressful job). I intend to get back to work in a very slow way.

    In response to your points Sonya (first let me offer some sympathy for the bad patch you are going through at the moment), no I have not found a cure, but the adaption I have made has led to me going from what felt like my deathbed to a relatively normal existence. I agree that pushing through this illness does not work. But in my case there was a world of difference in the effect of being pushed by other people (big crash), and choosing myself to push a little futher. Rest is essential though....pushing further when you are really ill doesnt work. But you are right, "giving in" does not always make you feel better. Sometimes the ill feelings last a few hours, sometimes a few weeks. I am still really finding it hard to convey exactly what I did, but what I can say is that the hardest part was in the first two weeks of the process....I went through terrible relapses, but when I relapsed I didnt stop doing any exercises, but kept up a minimum of activity, and built a base for the next day. The odd thing is that I had tried many times to keep going through relapses and this approach failed for me before. It seems that only the combination of a change in "emotional mindset" combined with the "keep going" approach worked. After the first two weeks it got alot easy and really all I had to do was keep going....my mind pretty much looked after itself from then on...as if some how I had significantly weakened (not broken) the link between exercise and illness. I also had some elements of Fibro...severe arthritic pains in my joints...these have now gone completely.

    So did I DO anything else different? Well yes, I did remove myself from as many sources of stress as I could - I stopped speaking to my family because they were stressing me out and making me feel worse. I am gradually reintroducing them into my life again now. Certainly I stopped pushing myself way beyond my boundaries, and if I feel ill, I do stop what I am doing.

    But I also found that the "psychological stuff" seemed to have the effect of making the boundaries slightly less sharp, and giving me more leeway. I still push myself however, and sometimes I still get a bad reaction to this, but one change has occured, in that I no longer react with fear or self damning when this happens....I rememember in the past I would get a bad relapse and would blame myself for pushing myself too far, and going "over the edge" again. In retrospect what happened was kind of weird....my body just gradually stopped reacting as badly to being pushed.

    Also, I have a very strong "problem solving" personality. I spent most of my day trying to figure this problem out and researching on the internet (when I was able), and then trying to figure out what I had done wrong when I got sick. I don't know if changing this approach helped but I do know that stopping this co-incided with me starting to recover.
    [This Message was Edited on 06/06/2006]

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