Coping with Illness: A tribute to my wife

I was ill yesterday, a migraine and periodic vomiting. So I spent the day in bed. It felt like a huge waste of time, which made me think again about the difficulties faced by G, my wife of twenty plus years.

For most of the time we have been married, she has been ill with myalgic encephalitis (M.E.), with two of its common complications, multiple sensitivities to chemicals and noise, and to some extent, to bright lights, along with an autoimmune consequence, type one diabetes. With this illness, trying to keep going regardless can lead to severe consequences - long periods completely bed-ridden, for instance. So G spends about 3 hours every day resting in bed. That means that for every eight years she has been ill, she has spend an extra year just lying down compared to most healthy people. There are all the things she cannot do. Things that most people do without apparent effort, like speaking, standing up, or thinking, are hard work and have to be rationed. Exercise, still recommended by some doctors, makes things worse. Associated cognitive dysfunction makes it difficult to have conversations with people she doesn't know, or use the phone, as she suffers from word blindness (not remembering common words at random), or says the opposite word without intending to (very confusing when she's directing me while I'm driving!), or cannot remember the answers to common questions (such as "What is your name?").

The aspect of her illness which most affects her day to day life is the sensitivity to chemicals. These sensitivities produce symptoms of lack of breath, and nausea and shaking (if a foodstuff) - and, if serious exposure occurs, convulsions (which happened when she was in hospital, and was prepared for an injection with an alcohol-soaked swab). Among the things she is allergic to are: most artificial scents including almost all modern cleaning products (washing powders and aftershave in particular make it very hard for us to have visitors or socialise - even what I pick up from work means that I wear different clothes around the house from outside it), alcohol, citric acid (a common additive to many sweet foods such as yoghurt, cakes, and jam), adrenaline (which is problematic for modern hospital care), onions and garlic, tobacco smoke, and so on. Avoiding these things is a major effort in the modern world; we buy the same products over and over, and the words "New improved recipe" on something she has been able to eat for years send us on a frantic effort of reading through the ingredient lists on anything she might be able to consider as a replacement.

The effects of the noise sensitivity has also been pretty devastating. G trained to be a lecturer in drama, and theatre was her big love. But she cannot now be around crowds of people, or loud or amplified music - the noise is physically painful. In addition to this, of course, many of the people in a crowded auditorium will be wearing clothes washed in scented products. So it's fifteen years since we've been to the theatre, and longer since we saw a film at a cinema. When we are invited to weddings or other special occasions, she cannot go. She has lost contact with many old friends as a result. Going to shops is a major hassle when she has to wear dark wraparound glasses and a breathing mask, just to be able to cope with the environment.

The diabetes, caused when her immune system decided that G's pancreas was an alien body, is comparatively easy to cope with. Of course, this means that it is the one problem she has which doctors immediately take seriously - six monthly specialist consultations, frequent blood tests, and a great deal of concern. But it is something which is well understood and can be managed with a little bit of discipline. Consultants find G very interesting, because type 1 diabetes usually affects young people (it used to be known as juvenile diabetes) and she developed it in her forties. Apart from the difficulty of persuading them that she shouldn't be subject to lots of extra tests and treatments (difficult because of her allergies), the main consequence of the diabetes is that G has to carry a fair amount of paraphernalia around with her, just in case there are problems with her blood sugar levels.

But - and here's the point of what I want to say - G still manages to be cheerful most of the time, even positive. She has taken up new pastimes (light gardening, with me doing the heavy work; card making) and has made new friends through forums and support groups for M.E. She even manages to put up with me being frustrated and irritable - and her illness affects me vastly less than it does her. Depression would be an easy way out (and doctors do often confuse M.E. with depression), but G does not let herself fall into that trap. She is strong inside in a way I think I would not be. She is great.