But my God shall supply all your need according to his riches in glory by Christ Jesus.
Philippians 4:19
An ME patient ‘feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades’.
Professor Mark Loveless, Head of the AIDS and ME/ CFS Clinic at Oregon Health Sciences University, Congressional Briefing, 1995
Feeling very unwell, I arrived back at home after the second Hepatitis B vaccination. As well as the balance problems, within just twenty- four hours all the symptoms I had experienced after the first injection had returned, most noticeably the muscle pain and exhaustion. I expected to be better after a few days, then after a few weeks – but it didn’t happen. In fact, the opposite was true: I got worse.
At first I remained under the care of my GP in Cardiff, and it was him who, after three months, first suggested that I might have ME. He did lots of blood tests and was very sympathetic to my situation, but travelling for over an hour each way when feeling very unwell to see my GP was not sustainable, so I re-registered with my GP back at home.
However, with Mum and Dad’s help, I had to return to Cardiff in order to clear my room – for the second time. I met with my tutor at the School of Nursing and was assured of a place in a future group of student nurses if I wanted it, as soon as I was well enough to take it up. That never happened. The worst thing about that time was not knowing what was wrong with me. At one time I more or less convinced myself that I must have some sort of brain tumour, with being so unwell for so long and clearly getting worse. I wasn’t severely affected by whatever it was, but I was in no way well enough to work even on a part-time basis. I could walk to the local shops – although that wasn’t easy due to the balance problems and pain – but I had to go to bed for a few hours each afternoon to get through the rest of the day.
We had some neighbours who went swimming once a week, so I decided to go with them, thinking that taking up some form of exercise such as swimming would help me to get better more quickly. It didn’t. I ended up crashing out after getting home from swimming, and just about recovering sufficiently to go back again the following week. I didn’t last many weeks! Mum and I also used to go into town to do some shopping, but the result was much the same as with swimming. I would get home and just lie in bed or on the settee for days afterwards, trying to recover. With hindsight, I would say that walking round the shops and going swimming (or taking any form of exercise) was probably the worst thing that I could have done, and it probably contributed to my condition becoming chronic and severe. But I didn’t know that back then.
Thankfully, my GP was sympathetic, did lots more blood tests, but still didn’t really know what was wrong with me – other than ‘probably ME’. She referred me to an NHS consultant neurologist. More blood tests, examinations, a brain scan, and finally, ten months after the second vaccination, a diagnosis: ME, Myalgic Encephalomyelitis. What a relief! At long last I knew what was wrong with me. I could now find out about my illness and see what I needed to do in order to get better. Or could I?
My relief at having a name for my illness was short-lived. Although I had no Internet access back then to look things up and get in touch with other sufferers, it didn’t take me long to realize that ME is not a good illness to have! Yes, it had been listed by the World Health Organization as a neurological condition alongside conditions such as MS and MND since 1969, yet many people, especially members of the medical profession, did not believe in its existence (and still don’t), and if they did, they thought it was some kind of psychological problem.
It was a confusing time. I knew that I was physically ill, something that I and my parents never doubted. But I was getting worse, not better, developing more symptoms and more problems. I finally had a name for my illness, but there was apparently no treatment that could be given or advice to be offered.
During my final appointment with the neurologist I asked him for advice. He firmly believed ME to be a physical, neurological illness, but his only reply was, ‘Have you thought of alternative medicine?’
