My Story

So how did I come to have ME? Like many people, I had flu in February 2001 and have never felt quite the same. In that year I remember having 'bouts' of low energy, my blood sugar was a bit dodgy and when I needed to eat, I needed to eat NOW. I started to have killer hangovers and sometimes I had to go to bed for an hour when I got home from work. Apart from that, I carried on as normal and by about October, these bouts of low energy seemed to have gone away.

In December 2001, I moved house, changed job and started a new relationship. Things were looking great and I was very happy. By February the low energy had returned and I felt quite rough, kind of hungover and fluey. I had some time off work, improved, went back, then a few weeks later, had to have time off again and again.

During this time, I noticed that I felt really unfit. Had given up my yoga class, was struggling with cycling to work and suddenly found walking up stairs and hills really difficult. I had palpitations, became really intollerant to caffeine and had a constant headache. After eating my lunch, I would feel as if I couldn't keep my eyes open. The strangest and most disturbing thing was that I would go to say one word and a completely different word would come out. I mumbled too. This was quite scary.

Over this period, I saw 2 doctors who carried out the usual tests (Thyroid Function, Liver Function, Diabetes, Anaemia, etc) all came back negative. One doctor said it might be my 'hormones' or Chronic Fatigue Syndrome. The next doctor asked if I was depressed, which I wasn't and was told that I must be, but didn't know it (I wanted to hit him!). I looked on the internet to find out more about CFS and only had a couple of the major symptoms so was convinced that I had NOT got this terrible illness.

The symptoms persisted, terrible headaches, fatigue that just didn't tie in with what I was doing, a feeling of poison running through my viens instead of blood etc etc. I eventually saw a doctor that I trusted, who listened to what I had to say and then said that I had classic symptoms of CFS. I got signed off work for a couple of months in all. I seemed to improve a little and so tried to go back to work. That was a BIG mistake. I only went in for one hour on 3 consecutive days and that finished me off. I got signed off work again and then decided to resign as it was incredibly stressful. So I had given up work, my social life, all of my interests like yoga, cycling, singing in a choir, playing guitar, walking, dancing, photography, as well as caffiene, alcohol and pretty much everything else that I enjoyed. I still wasn't getting any better and just could not get my head around it! How could I STILL be overdoing it when I had given up everything?

I had a couple of counselling sessions through AfME, with a wonderful woman called Pierette Housden. In the second session it became aparent that I needed to be looked after and wasn't coping on my own. I decided to go to my parents in Birmingham for 3 weeks, which turned into 3 months. During this time, other symptoms started to emerge: unbearable sleep disturbances, sensitivity to noise, aches in muscles and muslce twitching, emotional mood swings, concentration and memory problems (I felt like I had Alzheimers), weakness and the persisting fatigue. I now had ME as defined by Ramsay. I basically sat in a chair and lay on a bed for 3 months with a walk to the shop once a week, which wiped me out for 3 days after, but I needed to do it for my sanity. I found it very difficult to bathe myself, wash my hair and dry myself and had to have an hours rest immediately after a bath. Showers were too difficult. I found it hard to cook, to walk up the stairs, to put socks on and anything that required more than about a minute of stamina. I started to take Amitriptyline to help with my sleep as it had become my most troublesome symptom which helped.

I found out about a book called 'Better Recovery from Viral illness' from Dodona Books, which became my bible and I'm sure was the key to my recovery. The penny finally dropped about what 'overdoing it meant'. Any increase in symptoms = overdoing it. It was as simple as that, but a really traumatic journey to discover it.

After 3 months I went back home and had another 2 months of being pretty much housebound before I felt stable enough to begin to increase my activity. First I increased activity around the house, with attempting small amounts of chores, e.g. clean the sink in the bathroom. I also started to increase my social activity as my tolerance was going up quite quickly. I could have a visitor twice a week for an hour and have a couple of telephone calls too. I continued my once a week walk to the shop and then began to increase the frequency as I recovered more quickly from it.

Since then I have made steady progress. I have become pretty adept at pacing and have adapted my lifestyle and my expectations to suit my current situation. I get my pleasures where I can and I'm happy with a little rather than a lot. I focus on my improvements compared to where I was and try not to compare myself now to how I was prior to my illness. I became albe to walk a bit more, go to a tai chi class and even start a course at college with lots of support from the Disability team.

I have tried changing my diet to an almost detox diet (didn't do much), shiatsu (helped me get from being very inactive to being able to do some activity), supplements (Vit C, Cod Liver Oil, Evening Primrose Oil, B vits, mineral complex), Serotone 5HTP, relaxation tapes. I have not had any problems with my digestive system and I do not get swollen glands or sinus problems during a flare up. My main symptoms in a flare up are sleep problems, mental and physical fatigue, concentration and memory problems and twitching muslces (not painful).

It was all going so well and then last year (2004) I had 3 big relapses. One was from overdoing it - I felt so well and got carried away! That one lasted 4 months. I didn't cope very well with that one, had to defer my college course, go back to basics and had to see Pierette for counselling again. The second was from moving house and the third was a virus on top of the second, so I was in relapse from June until the end of December. I coped much better with these 2 as I was confident that I would come through it. I did however, experience some really dark moods which scared me as I had never felt like that before.

This year (2005) has been a breeze compared to last year. I have become stable, I have rejoined my college course and I have had appointments at the Homeopathic Hospital and the CFS/ME clinic in Bristol. The CFS clinic assessed me and then decided that I was doing well, had enough strategies for coping and a positive attitude so felt that there was nothing further they could offer me. The homeopathic hospital prescibed a remedy called 'carsinosin' which after makin me feel awful for a few days, appears to be doing something. My energy is much more solid, my recovery rate has improved and my stamina has improved quite a lot.

So having exhausted all the treatments, remedies and therapies that I could without breaking the bank, I have decided to give Reverse Therapy a go. I found out about it through the webgroup that I run with a couple of other people in Bristol for PWME, as part of the Bristol ME group. As soon as I heard about it I couldn't stop thinking about it. It struck a chord with me and I think it may well help me. I'm not hoping for a miraculous recovery, but I'm just looking at it as a tool to speed things up a bit.

I'm doing this blog so that people who are interested in RT can read what I have experienced and decide for themselves whether it might help them.