How I recovered from Chronic Fatigue Syndrome

How I got ill

As with many people, it took me quite some time before I even realised I had Chronic Fatigue Syndrome (CFS). I'd heard of ME, because a friend of my mum's had it for many years, but knew nothing about it. Although ignorance is not bliss, I don't know what I would have done if I'd known it would take 5 years to recover.

I returned home from travelling in India and almost immediately came down with a nasty virus. After a few weeks I went to the doctor, who said to come back if it didn’t clear up after two more weeks. I was a regular visitor to my local surgery over the next few months, and my doctor muttered something about post viral fatigue syndrome, without offering any explanation. Instead he sent me for more tests at the London School of Tropical medicine. According to every test I was a perfectly fit twenty five year old, but I felt awful. I had a permanent feeling of having flu. I had no energy, a sore throat, and huge circles under my eyes from the difficult, empty sleep which seemed to leave me feeling even more exhausted than when I went to bed.

After a year, I was referred to Professor Pinching at St Barts who confirmed that I had ME, also known as Chronic Fatigue Syndrome (CFS). It took me five years to get better, but I did and I am now fitter than I ever have been.

So what made me ill? I believe it was a combination of several factors:

• For several years before the ME started, my general constitution was poor. I seemed to contract almost every virus doing the rounds, despite a reasonably healthy diet.
• Prior to going to India, I took every recommended vaccination and more, leaving my already low defences further weakened.
• I was away for a year, didn’t eat any meat, I got ill with various stomach problems, and became underweight.
• I have a tendency to bottle up my emotions and do not deal with stress very well. I felt frustrated and directionless and unable to express this to anyone. This I believe to be a crucial factor in weakening my immune system.
• Once ill with CFS I made things very hard for myself – I continued working for two years and trying to behave as if I was completely normal. I didn't accept my condition and my reduced ability to live day to day. It took me a long time to admit to myself and everyone around me I was ill.

What I Tried To Get Better

I tried many therapies: acupuncture and homeopathy didn’t seem to have any effect. Aromatherapy massage was relaxing for the time I was there, but had no lasting benefit. I changed my diet: I cut out wheat, dairy and alcohol. I took supplements. At Barts, I was subscribed anti depressants to improve my sleep. None of these helped me.

After two years of denial I finally admitted to the world I was ill. I had felt such shame, such inadequacy, and was so secretive about my plight. One weekend I visited my parents and broke down. I was inconsolable and couldn’t stop crying. I had never allowed anyone to see me like this. The next day I felt an enormous relief. I see now that this was my first step in the right direction. I stopped work, moved back to my parents’ house. My life was on hold. My sole aim was to get over this awful illness.

A year later I had improved a little: I had more energy and was able to get out occasionally. I was visiting a physiotherapist, who put me on a course of graduated exercise. Despite all this, I was a long way off being able to lead a normal life and still felt terrible for long periods. I became increasingly frustrated, angry one day, silent and morose the next. It must have been difficult for my parents, seeing their son in such a state.

Three and a half years into the illness I started seeing a psychotherapist. I had always scorned the shrink’s couch and what I saw as wallowing in one’s problems, but I felt desperate. It was the best thing I have ever done, illness or no illness. I had a whole hour every week to speak intimately and in confidence about myself, about what I had been through. I told her things I had never told anyone; nothing particularly remarkable, but for me very personal and not easily divulged. I do not believe that friends or family can properly fill the role of a therapist. Of course, it is wonderful to have intimate, meaningful conversations with those closest to you. But, sometimes you need to face up to uncomfortable truths, and personal change does not take place easily.

How I Got Better

As I wrote above, I believe the cause of my illness to be a weakened physical and emotional state, exacerbated by stubborn denial. Dealing with these caused me to gradually improve. Because I bottled my feelings up for so many years, psychotherapy gave the opportunity to express myself and explore my emotional being. I started to really enjoy myself in a way I hadn’t since I was a child, even through the illness. It’s so good to share your feelings and thoughts with others. You just end up going round in circles on your own. Some things go beyond cold logic, and I have found there is a great difference between intellectually knowing a fact, and actually realising something to the core of your being.

I know that some find it offensive, almost an accusation, to be told it is "all in the mind". I agree that it most certainly is not the case. But if you want to get better, one of the most important things of all is to have an open mind. This promotes acceptance, and a willingness to change. It did for me anyhow. Also, I clearly had issues that were perhaps independent of my CFS, which I was able to deal with through my therapy. This in turn meant that all my internal resources could be directed towards healing my chronic fatigue. So, one piece of advice I would give to someone with CFS or any other chronic illness: are there any other parts of your life and well being you can address? Something maybe not so huge and all consuming as the main illness that will give relief. If so, then dealing with that will assist your recovery.

Time also played a part in my rehabilitation. Perhaps things ran their course. I definitely made things worse for myself initially – I am sure I could have got better a lot quicker if I had stopped work straight away, and aired my feelings as I needed. But also I think my system needed to recover from the injections and battering it got whilst travelling. And also, I must say that since I got over my illness, I am a far happier, balanced person than before I got ill, so in a somewhat perverse way you could say my illness benefited me.

During my illness it took me a long time to get organised. For years I almost surrendered myself to the medical (and alternative medicine) professions. This "surrender" is very different to being open minded and accepting. I didn't realise how important it was for me to take control and to be more demanding and questioning of the "experts" that I regularly saw, and often paid good money to see.

Over the last year, I improved markedly. The periods of that “ME feeling” grew shorter and less frequent, and I felt more confidence and robust. I did voluntary work with the Citizens Advice Bureau. I met and fell in love with my partner Gaynor, and now I am working full time and playing in a band. A few months ago I completed a three day bike ride across the South Downs. I was knackered, but so was everyone else.

I can’t say I am completely "better", because that doesn’t mean a lot. But I am completely recovered from ME, and you can do the same, I assure you. Your journey may be different, your answers may be different, but you can do it.