ME: a full-time job!

A couple of friends have asked how I spend my time. The question comes from the viewpoint of professional women in demanding jobs (like I used to have!) who longingly imagine the delights of a month or even a year off work with nothing much to do. And naturally they also imagine that I’m well enough to enjoy not working, because when you’re well, but maybe just a bit tired, it’s awfully hard to imagine not being well.

On my very worst days I’m not actually well enough to do anything at all. I lie on the sofa and sleep, or just doze and watch the clouds scudding past the window. My head is full of cotton wool, I’m dizzy, and barely have enough energy to get an apple or crackers and cheese from the kitchen when I’m hungry. I may get three or four days a month like that. But I’m grateful; people with more severe ME are in constant pain, are often bed-bound, and generally have a greater variety of unpleasant symptoms involving digestive, muscle, joint, and even heart problems.

On better days I have a goal: to do whatever I can that might help me get well. For the first few hours of the day my brain doesn’t even function well enough to remember my goal, so I just sip my ginger & lemon tea, prepare breakfast, listen to the news, play with the cats, read e-mails and the BBC website, and maybe make one or two phone calls if I’m up for it. Then I’ll take a shower, do a short yoga stretch routine, and my first meditation session of the day. I may wash some laundry and take it up to the roof to dry; or I’ll take a short walk to the local shops for cat-food, eggs, or chocolate. Then it’s time to cook lunch. There’s plenty of advice on what to eat floating around on the internet if you’ve got ME; a healthy diet is important, and that means plenty of fresh, and freshly cooked, vegetables. I’m not known for being a cook, but family members might be surprised at how much cooking I’m doing these days. It’s turned into my new hobby, and I’ve been scouring cookbooks and cookery websites for delicious new healthy recipes, and making up a few of my own along the way.

After lunch is almost always rest time. Rest is extremely important for people with ME – even if one doesn’t feel like resting. It’s far too easy to overdo things and end up suffering a relapse soon after as a result. Many people with ME were busy professionals before they became ill, and resting doesn’t come naturally. There’s always that feeling of “I ought to be doing something”, and that’s how some people remain ill for longer than they might otherwise. The instinct is to “fight” the illness, but ME doesn’t react in the same way as the usual kind of illness and fighting back can make it much worse. So my afternoons are close to sacred rest time; I may sleep, listen to a relaxation tape, or read if I’m feeling well enough.

Late afternoon is when some of my brain fog begins to clear – on a good day! I may go out for a short walk (ten or twenty minutes at most) along the sea front close to my flat. Then I’ll do a longer yoga session and another meditation session, followed by dinner and washing up. Often as not I won’t feel well enough to do the dishes and will leave them for morning. A couple of hours to write some e-mails, check out what my friends are up to on Facebook, look at other blogs, or do yet more research on ME – research that has consumed many, many hours of my life since I was diagnosed last October.

And so to bed – and if I’m really lucky, a full eight hours sleep (actually rare for people with more severe ME). What have I not done? I don’t have a social life. I don’t visit places of interest on this historic island. I don’t sit out in the sun (extremely detrimental to ME). I don’t watch TV and rarely watch a film. I don't clean much. I’ve almost given up listening to the radio (too stressful). I make few phone calls. Sometimes I don’t talk to another person for two or three days in a row. It’s not a holiday – but the goal is to get well.

For anyone who’d like to read a longer version of what life is like with ME, try “The State of Me” by Nasim Marie Jafry, or “Verity Red’s Diary” by Maria Mann. For a journalist’s exposé of the medical research establishment's failure to take the illness seriously, see “Osler’s Web” by Hillary Johnson.