When I updated this website a few months ago, I decided to remove my blog page on living with Chronic Fatigue Syndrome. I don’t want to be defined by my illness – I am a writer who happens to have an illness. The writing is the most important part. But today, I have been struggling. I am perhaps still recovering from an event last Saturday where, ironically, I spoke about writing my way through chronic illness.
At this talk, I spoke of often failing to follow my own good advice on managing the illness. Have I done that this week? Whether or not this is the case, I am just feeling plain fed up of having to manage it at all. As someone said to me this week, someone who also has a debilitating illness, ‘In my own head, I think I can rule the world,’ but we can’t, and it’s bloody frustrating.
The temptation is to do nothing, but doing nothing just makes my back hurt and makes me feel depressed. So I try to do something, and to remember what helps. Today, that was getting out for a little while with my husband, for a coffee and a brief look in a couple of charity shops, but not being tempted to stay out too long. I was rewarded with a cute new pair of blue suede shoes (£5), which will be just right for a couple of new outfits, one of which is a silk dress I bought for a fiver on another such trip. Then, on the way back home, I had a craving for fruit, so nipped into Sainsbury’s for one of those ready-prepared pots of exotic fruit. I don’t usually buy fruit this way, but a quick fruit hit was needed. Sometimes the guilt of hurting the planet by buying things with too much packaging has to be outweighed by helping myself.
I laid down on the sofa as soon as we got home, and asked my husband to get the lunch, battling my usual urge to soldier on, unpack the shopping, unload the washing machine etc. We had good food, when junk food would have given me a quick rush and then a crash, so I was thinking well. And then, a sleep under a duvet on the sofa, the cat curled up at my side, followed by writing this post.
All those things have helped – getting out, being in company, not overdoing it, small treats, asking for help, eating well, rest, but most of all the writing of this post. There, I’ve shared it. It’s out of my head and onto the page, and now I don’t feel so bad.
I shall go back to resting now – promise!