• Starbuck - My Story

    My onset of ME seemed very sudden at the time, but looking back at events leading up to it, it was clear that I had been very run down and in bad health for a while. I was also under a lot of academic and personal stress. The first major attack of ME came on in 1998 while I was in the second year of university studying for an English degree, but looking back I think it had started in a minor form before this as I'd had a bad bout of what Id assumed to be flu a year earlier.

    It's only looking back that I've realised it definitely seemed to take the form of ME, as it came on suddenly while I was sweeping up my room in the Halls of Residence, and left me feeling incredibly weak in a way Id never experienced before. It passed a week later like normal flu and I didn't think anything else of it. I carried on my university studies with no significant health problems but I kept catching more colds than normal, even during the summer months. I was still under a lot of stress and struggling with severe depression and anxiety.

    It continued this way until October 1998 when I came down with what seemed like really severe flu. I was very ill for two weeks with terrible aches and pains, sickness, chills, fever, all the usual flu symptoms. I was relieved when this finally passed and I went back to my usual activities. However, just three or four weeks later all the symptoms returned. I woke up feeling incredibly ill and hardly able to walk. Refusing to believe the flu had come back so quickly, I dragged myself into college to go to a lecture, but felt so ill I had to get a taxi home.

    For a week I was mostly bedridden, feeling too sick and weak to do anything else but stagger to the toilet and back. Luckily I was living as a lodger in a couple's house during the second year, so I didn't have to worry about cooking or housekeeping. One of my college friends who also lodged there did some gentle exercises on my legs and brought me up my meals and college assignments, so I was well cared for!

    I called a doctor out at this point, who told me I was still suffering from flu. I had already heard of ME because my sixth form teacher had been ill with it, so I recognised that was what I had. I mentioned that to the doctor who told me there was no such thing as ME, it was just a fashionable name for tiredness. I was too upset and ill to argue so I decided I would deal with it my own way. I did get a diagnosis of ME the following summer from the surgery local to my mums home area where I returned for a brief period. I was told to rest first and then do what I could.

    Since then my health gradually improved, with some setbacks, some minor relapses lasting a few days, and one or two lasting a month or more. I was able to complete my degree by being extremely careful not to walk too far, and by cutting out all my social activities. By 2003 my symptoms only appeared very rarely and I would have appeared "recovered" by most people. However I was still very much aware that I had to be careful and not do any strenuous exercise. I didn't ever run or take part in any sport, although I was able to walk for two or more hours a day by this time.

    In September 2004 I did a full time PGCE course at college, which sadly didn't work out and I left in April 2005. I found myself a full time job which I loved, and I was married with a young son to look after, so life was good but I was very busy and exhausted. I had no ME symptoms at all until September 2005 when I went on holiday to the New Forest and suddenly that poisoned, "fluey" feeling came back after a lot of walking. I was off work for a week but then recovered.

    However this didn't last as in November last year I was driving home from work when suddenly the fluey feeling returned, and I felt terribly sick and weak. I went home, got into bed and was bedridden for a week with severe muscle weakness. Since then, well it has been another cycle of improvement and relapse. I had built up to 60% on the activity scale, but have recently had a severe relapse due to walking too far, and I'm now down to about 20-30%.

    The most important thing this illness has taught me is to listen to my body and treat it well. I believe this illness will never leave me completely, no matter how recovered I feel, so I need to be aware of my energy and leave some spare everyday. I found that a healthy diet with supplements, and slow steady pacing were the most important things that helped me gradually improve from each relapse. Unfortunately I tend to let those things slip when I improve! I also feel that ongoing emotional stress was a factor in my illness, so rest and relaxation is a key part of my day.

    I would like to thank everyone at Foggy Friends for the big difference you have made to my life. I've made some great friends, and you are all a great bunch of people! (Hugs)