I should be reading “Bleak House” for next week’s book group. I’ve known about it for three months, downloaded it about six weeks ago, but still have only read the first paragraph. Lots of things have got in the way. I have been diverted by other more appealing novels, by watching almost all of “The West Wing”, which I had never seen before, and by everyday chores. Not to mention having my husband in hospital for two weeks, during which time our car broke down, and getting some(very welcome) paid work. I’m also not a great fan of Dickens. Admittedly I haven’t attempted any for some forty years, since “David Copperfield”and “A Tale of Two Cities” were on my list of school texts. I remember ploughing through his prose, struggling for page after page until I reached the end, and although I know he is a wise observer of human nature and a much needed challenge to the social conditions of the day, I can’t face it. For above all, I think the name defeats me two. Much as I try to change, I am a glass-half empty kind of person at heart, and at present my house is kind of bleak. For while my 60-something peers are travelling far and often, and minding grandchildren whom they can give back at the end of the day, my husband and I are still full time carers for our thirty year old daughter, who has myalgic encephalitis – also known, cruelly, as chronic fatigue syndrome. Much has been learned about this puzzling disorder since she developed it some fifteen years ago – half her lifetime! Yet although it is better understood, there remains no cure. So we watch her struggle with the major symptoms of pain, post-exertional (delayed) fatigue and “brain fog.” Some days even eating is a struggle; sometimes she can only walk by holding onto the walls or the furniture. Pain is constant, her sleep cycle is shot. She’ll put effort into trying to plan a routine which includes simple things like sitting on the balcony, meditating and doing some simple stretches, only to have a bad night for no reason, or to spend a few hours with friends, and find she has moved several steps backwards instead of forwards. She picks herself up again, but it’s pretty hard to stay motivated when the rewards are minimal. We teach our kids that effort earns success, that practice makes perfect, but with a neuro-immune disease that remains poorly understood, at best, nine times out of ten effort gets you nowhere. As parents and carers we are trapped between support and over-protection. On the days she can’t get the box of cereal out of the cupboard, we do it for her. We make cups of tea, we take her to appointments. In ways we are enablers, but it’s hard to set limits or employ tough love when the disease has no constants. Maybe reading “Bleak House” would have shown me that lots of people lead a life that is bleaker than mine, which, on the whole is pretty good. But. I’ll settle for an uplifting biography or an escapist chick-lit before I submit myself to Dickens. And that is caring for me. Post-script: I wasn’t the only one who hadn’t read Bleak House. Even the person who said “Let’s do a Dickens.” And we resolved not to choose books longer than 400 pages in future!