Surviving severe me

(“It could be worse”)

Ivan Hatvany takes a deep breath and tries to draw some wisdom from the well-meant (often infuriating) comments made to people with ME.

It could be worse, you could have cancer!

Four so far. Four people have told me that one. I don’t blame them. Faced with an ill friend, or relative, what do you say? You have to sound positive.

For some people this article will sound too positive. Like any clichés, the five mottoes that follow can sound trite or patronizing. And of course they oversimplify complex set of conditions but they can also be good for internal reflection. Just don’t bandy them around too much with your friends.

If you have good and bad days, read this on a good day. Most of us are well-informed already about the grim realities, so no more of those here. This article is not about therapies or medical discussion. Instead it looks for glimmers of light at the end of the tunnel.

Much of the theory about coping with other illnesses applies directly to ME. Many cancer experts have described the phenomenon of the “exceptional cancer patient”. Such people actively work (often succeeding) to defy the average statistics.

These ME mottoes should nudge us in the right direction. If just a couple of them can give you a lift or challenge unhealthy thought patterns then it's a worthwhile read.

1. The illness burnt my house down; but at least I can see the sky.

How much of a shock was the onset of your illness? Mine involved a sharp decline over just a few weeks. I was head of department in a school, Dad to three young girls, and addicted to sport including, the odd lumbering triathlon.

One-day two years ago I started forgetting the names of people I taught for sometime. A week later I lost my balance writing on the whiteboard. I started writing on it from my chair. Three weeks after that I was driving home shaky and exhausted for a forty minute sleep every lunchtime. Eventually my GP told me to stop dragging myself back into work. The next you was spent almost solidly in two places, lying in bed of flat on the sofa. Now I'm down to about half that time lying flat, and life is worth living again.

If the house is a metaphor for everything around us, then most of us will relate to the burning down analogy.

Like me though, you will have no doubt learnt lessons along this horrible journey. Your life will be simpler and probably you’ve questioned all kinds of attitudes and beliefs. Your familiar circumstances and relationships are unhinged and you explore deep areas of habits, thought patterns and mindsets. Most people with ME resolve to live differently when their health improves and when it does, most say that their lives are better than before. They have shifted priorities and learned certain wisdom; learned in fact to see the sky.

2. “Every morning is a Sunday morning.”

You probably wake up feeling pretty unrefreshed. And certainly not feeling pretty. ME experts agree that get ting enough rest is vital. Consider how you used to treat Sunday mornings and allow yourself the same languid approach each day. Whilst most doctors say that it’s much better to get up, washed and dressed at a reasonable hour, you can always collapse on the sofa after your (also vital) healthy breakfast.

Have you listened to the early morning traffic news? Hearing about hundreds of people trapped on the M25 at 8 a.m. is quite a good antidote to self-pity. So is listening to the morning birdsong. So have an easy Sunday morning everyday.

3. “Live your life not your illness.”

When a chronic illness first strikes, we naturally think of little else. In my case, I think I talked of little else, so extra thanks there to my family and friends who stuck by and kept listening.

As time goes on most of us adapt to some extent. What choices is there? The two ‘A’ words apply here - accepting and adapting. The more we can accept the fact of what has happened, come to terms with it and face it square on, the more we can start to adapt our lives. Adapting your life means lowering your sights, redefining ‘useful’ and ‘functional’, finding different things you can still enjoy, and not hankering too much after the many activities lost.

So what is meant by living your illness? This is the opposite approach, where one makes an already tough life tougher. Do you define everything in terms of your illness? Do you think your day is always worse than your healthy friends day? What if he lost his job that day, or his mother? Do you fear the worst and convince yourself every new twinge or rough patch is the start of a major relapse? Perhaps you have a need to tell everyone the latest development in your symptoms.

All these things are understandable but, do them too much and you’ll soon be living your illness and bypassing your life.

4. “Life is a book full of chapters.”

I learned this one from my neighbour whose husband died a horrendous death aged 52 for a brain disease, leaving her with two children, just into their teens. “Life will never be the same” she told me, “but there are still new chapters to be lived.”

It helps to let go of ‘previous chapters’, and not hanker after what we once had. My mountain-bike, for example, still sits in the garage. I've learnt not to go and look at it. There may be other chapters, where I can.

5. “Very short of energy but never short of time.”

One of the hardest challenges with ME is accepting limitations. Most of us struggle to carry out simple chores, but most of us also find that time hangs heavy. We look around us at a world full of people charging around endlessly busy. We wonder how they do it.

It’s easy to start thinking that they have everything and we have nothing. But that’s another of those mindsets that needs to be challenged. The one thing have more of is time.

Remember the M25 traffic example previously. I said earlier that we need to find things we can still enjoy. Activities like reading, listening to the radio and the internet can all be rewarding, even if you have to enjoy them in short measures.

The more you can meet and talk to other people with ME, the more ideas you get for productively filling your time. One also needs to change the old rush-rush attitude of ‘getting the job done’. One friend of mine who loves gardening told me “I can only work in 15-minute chunks but if I do three of those a day, I can transform the garden in a fortnight.” Another friend with ME read 48 books in a year, keeping track of his perusals by writing down the title and a brief paragraph about each in a special notebook. Keeping a record of such things will increase your sense of achievement.

Small recompense it may be, but time can be a gift.

From InterAction Issue 52,

Action 4 ME www.action4me.org.uk

UK 0845 123 2380