| My Story
THE BEGINNING OF CFS / ME
In the summer of 1988 I was 21 and I’d just started a new job. Then I caught a flu-like illness that lingered for ages. When eventually I thought I had recovered I went out partying and it took me five years to recover.
For the next few months I struggled against an illness that just got worse and worse. The only thing that showed up on a blood test was a high haematocrit level, which my doctor said was nothing to worry about. I felt drugged and exhausted. My muscles felt incredibly weak and I remember being sent home from work one lunchtime because I looked so ill.
I went to a friend’s house and remember the room suddenly seeming to become very bright, which made me panic a bit. I later found out that this was due to the iris part of the eye becoming so weak as to not be able to contract in bright light conditions.
I also found my co-ordination was disappearing and remember early on playing football and instead of kicking the ball I stood on it, fell over and a huge great weal swelled up on my arm! I also remember how in the mornings on the way to work I would feel almost like I was living in the back of my head and had to look down to make sure I was wearing clothes because I could not feel them on me. When I was at work I would often get strange hot flushes, which I was told was only really experienced by menopausal women!
After five and a half months, with longer and longer times absent from my new job I was sacked for incompetence rather than illness.
Once home I rested physically, but not mentally and began to find that I ran up against a wall, where I just could not concentrate at all or really do anything.
My doctor initially gave me certificates for Post Viral Fatigue Syndrome, but after three months he said that PVFS did not continue for that long and sent me to a supposed specialist. The specialist was very aggressive, cross-examining all my comments about my symptoms. I thought he was just being very sure and felt at a complete loss when my doctor said that he had reported back that there was nothing wrong with me. Every two weeks I had to argue my case to my doctor, which became increasingly stressful. At one point I gave him a list of the symptoms that I was suffering, which filled a sheet of A4. He thought that it was far more likely that my situation was more akin to hypochondria than something truly physical. After a further three months of this I changed to a doctor in a nearby town who I had heard was sympathetic to chronic fatigue syndrome. I was very lucky to find this doctor and he gave me what I needed - long term sick notes without stress. The first doctor had traumatised me with a feeling of guilt for being ill, which took a long time to subside. Worst of all, I later found out that this first doctor had sent an initial letter to the ‘specialist’ explaining that when my mother was of a similar age to me she had suffered a breakdown – implying that the same was true of me (even though I wasn’t going through a hugely emotional divorce like my mother had been)
One thing I certainly found out was that physical and mental energy were completely linked to one another. If I went for a walk I was exhausted and could not concentrate on anything and if I concentrated on something, I could literally feel the energy draining out of my muscles. Not only that, but I began to find that concentration began to affect my ears, starting with an odd rushing sound, developing to tinnitus and onwards to earache. After a while even music in the background began to drain me of energy. Simply sitting on a bench watching people did the same.
Some friends thought I’d become a recluse and tried to drag me out to the pub because they believed that it would help me. Interacting with people became very draining, especially as I began to find the strange sensation that my brain didn’t seem to be able to communicate with my facial muscles – something that your average person takes completely for granted.
I also found it difficult to look after my body temperature and I would soon get drained of energy if it were too cold or hot. Added to this were muscle twitches, which went hand in hand with irritability, severe headaches, severe bed-drenching night sweats, insomnia and then nightmares when I did fall asleep. I would lie awake from 10pm till about 5am and then there would be a feeling like a rush of chemicals and I would fall into a deep sleep for about 3 hours with vivid dreams and wake up feeling groggy, in addition to all the other feelings. Strangely my dreams became more interesting than my real life.
One thing I was very lucky about was that apart from a couple of episodes of gastro-enteritis and real flu, I never really lost my appetite, although I did become sensitive to some foods. Too much concentration on something could also affect my bowels!
TRYING TO RECOVER IS A TRYING BUSINESS
So what efforts towards recovery? Conventional medicine had nothing to offer at the time. I saw a healer for three sessions. He thought the ringing in my ears was a good sign, but it later turned into tinnitus. I had hair analysis, which showed I was low in everything except zinc. So I started taking multi-vitamin tablets.
Next a dietician thought that chronic fatigue syndrome was caused by Candida Albicans overgrowth. A urine test showed some overgrowth, and I was put on a special diet to deal with this. No sugars or yeasts with caprycilic acid capsules to be taken for a month followed by reintroduction of flora with probiotic capsules. I just felt worse and worse, but was told that this was caused by toxins released during ‘candida die off’. However when all was finished there was no improvement. Three months later I tried again, thinking that I hadn’t followed the diet strictly enough the first time and was left bed-bound for weeks. I lost weight down to seven and a half stone and was put on multi-vitamin milkshakes.
I saw three homeopaths, a Chinese herbalist, a crystal healer and an acupuncturist. All to no avail.
Next along the line was magnesium injection treatment. My doctor was willing to give it a try and arranged for a few of them to be given over a number of weeks. They were to be given intra-muscularly in the rear. Unfortunately, the only result received was perhaps a little colour in my face from embarrassment when undergoing the treatment. I was so pale that I remember overhearing one nurse saying to another that I looked like ‘death warmed up’.
A little while later I read an article about cold baths, which seemed like a good idea.
Supposedly they thinned the blood, improved clotting factors, raised testosterone in men and oestrogen in women and improved the efficiency of some white blood cells. I read how to ease yourself in so that you started with a warm bath and slowly filled it with cold water, whilst draining out the warm. This worked, but left me with a terrible headache, which I didn’t think was very helpful.
An ultra-violet strip light to combat Seasonally Affected Depression also made no
I tried various advertised wonder cures such as ginko biloba, to help circulation, echinacea to improve immune system, germanium, which was causing kidney failure in the Japan and something else that was causing paralysis to people in the United States! After this lot I’d had enough. I was inspired by a book that I had read, which made me think about the power of the mind and also by a letter that my father had sent, which related to the challenges that we face in life. It also reminded me of a time early on in my illness where I had consulted the I-Ching with the question, ‘Why am I going through this?’ The page I was directed to implied that it was ‘to learn’ and at the time I had not been very impressed. At this point I began to wonder. I decided to throw away all my pills, tablets, balms and potions. I would give my body a level playing field and use the power of my mind to recover.
THE PATH TO RECOVERY
A number of things helped. First was a movement away from anger and bitterness and onto acceptance of the present situation. Understanding that this was the way it was at the moment. When feeling at my worst there might be days when there would be a knock on the door. I would look out of the window and see a friend who I would desperately like to see. I knew, though, that if I opened the door to them I would be weak, let them in and be drained very quickly by the effort of interacting and then suffer for days. It took strength to ignore the knocking when you were in such a lonely situation. Christmas day would be difficult, having to rest whilst others enjoyed themselves. On bonfire night – a huge event in the nearby town of Lewes – I would hear the rumble of the bonfire society displays and wonder what my friends would be up to. New Years Eve would be similar. When I was up to having friends over they would tell me about their relationships, which made me feel even more left out. I think there was a period of about two years when, other than family members, I never spoke to another girl. Some friends didn’t visit as they didn’t know what to say, but one or two were really good. I don’t think it’s a case of knowing who your real friends are, just that some people are better suited to deal with different situations.
One thing I certainly learnt was pacing. Hour on, hour off. Lying in a bed, eyes closed doing nothing. This was something that I found extremely difficult to do, having been an extremely active person, physically and mentally, beforehand. Pre-empting difficult situations with rest also helped a little.
I also ended up resurrecting the cold-water idea, but in the form of cold showers. My
circulation was very poor and one summer was particularly hot. I learnt to sit in the sun for a bit and then have a brief cold shower to cool down. By the end of the summer my circulation had definitely improved.
Some things were counter-intuitively good for me. Eating a few unhealthy foods at times or playing slow moving war games on a computer might both cause problems afterwards, but helped my morale.
Insomnia had been a problem throughout the illness and it was through learning how to cope with this that I began to develop what I now know to be a form of self-hypnosis. Fairly quickly I began to gain control over my sleeping and then began to realise much more potential within this process and directed it towards my illness.
Slowly and surely I began to make progress.
I began to be able to go out once more and see my friends. At first, with my limited capacities, it was difficult to join in, which could be depressing. It made me realise just how ill I had become. However, with patience and continuing my self-hypnosis, I began to find my old self and more. I continued to improve the techniques and within months I had recovered to such a degree that I was surprising myself, partying, making up for the lost years and once again playing tennis and squash as I still do now.
Recognising how much I had learnt over these troubled years I decided to take formal training at the London College of Clinical Hypnosis. Here it became clear just how pertinent my self-hypnosis methods had been to treating CFS/ME and that I had instinctively already been using CBT (cognitive behavioural therapy) and NLP (neuro linguistic programming) techniques.
With these formal insights I refined my methods further and now offer these to anyone with CFS/ME.
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