A Short Account of My Experience of ME
At 41 I was as fit as a flea, with three teenage children (and a grandson), three dogs and two cats, as well as a husband. I went running every day and had a daily exercise routine too. Nothing was too much trouble. I also helped out at my church and was about to start an exercise class there.
Then came this illness. Suddenly I could do very little. I tried, time and again, but it was no use. Within a year my already failing marriage ended. I got the chance to move out and did, knowing that as my illness would not be tolerated at home it was all I could do. I took some part time work as part of an income support scheme, and spent every weekend in bed to recover from 21 hours a week of clerical work.
Then I had an emergency hysterectomy, with no counseling whatsoever, which nearly finished me off both physically and emotionally. After a time, to avoid being forced into work I wouldn’t be able to do, and having no legitimate excuse for not working, as ME was even less recognised back then than it is now, I went back to school. I did some night school, then college, and won a place at University. It was very hard, even getting there and back was such a struggle. In my first year I dislocated my knee and broke my ankle, which meant more surgery, so took the rest of that year off and started again the following year.
I won’t go into all the nightmare events that happened in my life during the next three years, but I was just about coping by doing nothing more than the set work, and finding it more and more exhausting even though I had moved to live very close, about 500m away, to make it easier. I got my degree but lost my then partner. I was then 51.
Since then I have done virtually nothing, or nothing that most people would recognise as living. I did start a post graduate course but was too ill by then to keep it up. I had further surgery three years ago for a low grade malignant Phyllodes Tumour. Now I am 70 and becoming ever more feeble, exhausted, and in pain.
My memory deserts me at times and the coming Christmas celebration is just too much to contemplate. If I don’t pick up a bit I will have to cancel it, again.
I sometimes wonder where it will all end. I have a cat, who is a blessing but costs in terms of energy and who is becoming old and sick herself. I also have eleven grandchildren whom I rarely see, and 4 great grandchildren whom I don’t imagine I will ever see. My children all live too far away and have lives which prevent them visiting. Sometimes the loneliness is hard emotionally, and certainly getting through the days is, physically.
If I was suddenly healed of this tomorrow, at my age there is no way I will ever again be the person I was at 40. I have lost nearly 30 years of any meaningful life, merely existing as I do, virtually housebound, only going out for vital appointments. I try to stay cheerful but it’s not always easy. I get depressed at times, and over emotional at others. I’m sure the short days of winter aren’t helping and the approach of Christmas is always hard, with its focus on family and jollity, neither of which are part of my life, and haven’t been for years.
So this is it. A potted account of my illness. Or at least, the one that has taken away so much. My life now is all online, as are my friends, so it isn’t all bad.
It’s The Little Things
It's the little things. The big things, well, people understand it more. For instance, I haven't been able to go shopping for years now. It's tough not being able to choose your own groceries or whatever, something most people don't have to think about, but at least there are supermarkets who will do it for you and deliver their choices to your door. This works well enough most of the time until they don't have what you ordered and the person doing the choosing for you has very different ideas from you. It's a bit like Christmas, every week, but not in a good way. You open the bag wondering what surprise you're in for this time. Will it be something you wanted, or not?
Like most people who get home deliveries I have been presented with substitutions - food I would never buy, don't like, would never eat, or just don't want. I am then in a dilemma. If I don't take it, what do I eat instead? And if I send it back it will just be thrown away, which I find unacceptable. Problem. Stress. Stress I don't need. But on the whole I manage.
Going out when absolutely necessary is simple, I call a cab and struggle the rest of the way.
Housework? It just doesn't get done, mostly. Luckily I was never all that house-proud. My bedroom looks like a jumble sale. The living room is in chaos. I always joke that no one will ever break in because it looks like the place has been turned over already. I move hesitantly, sloth like, around the house, resembling mountaineers at a high altitude, body and brain on go slow. Except when they're at a dead stop. But there's no one here to see it, so I don't care.
No, like I say, it's the little things. Like turning over in bed. You're probably thinking: "What? Turning over in bed? I can do that in my sleep!" Indeed you can, and I'm sure you do. Film of sleeping people shows just how often most people do it, moving around all night long. I used to do it myself once. And on good nights I still do. But on the bad ones...well. The thing is, we have to turn sometimes to keep the circulation going, to avoid pressure sores, going numb, etc.
But if your body is flatly refusing to do it, what then? I have nights where I wake up in exactly the same position I went to sleep in, having not moved at all, the sheets totally undisturbed. I have other nights where I wake up just to turn over, a bit at a time. because it takes quite a lot of effort and concentration.
It's as if my subconscious is behaving like an orchestra without a conductor. No one is telling which bit of me to move next. Even awake it can be just the same. Have you seen those people who scale sheer rock faces with no help? That three points of contact rule. It's a bit like that sometimes. Move this foot, move this hand, now this one, now that one, and so on, until you get where you want to be. It can take quite a time. And a lot of effort, when your limbs feel like lead. Such a little thing, you'd think, but it takes forever.
Making a cup of tea is another. You're sitting in your seat with a dry mouth, trying to decide if you really need that drink or can you do without a bit longer. It does make me sound awfully lazy, I know. But it's not that. It's the effort it takes to haul your body out of the chair, stumble to the kitchen, then realising you didn't bring your cup with you so you have to go back for it. Then you fill the cup with water and tip it into the lightweight camping kettle to boil. You put the teabag into the cup, pour on the water, shuffle over to the fridge for milk, add the milk, go back to the fridge to put the milk away. Then you have to pick up the cup of tea which feels like a lead weight and try to get it back to the living room without spilling it, set it down and collapse into the chair. By which time you're too exhausted to drink it.
Another little adventure, just one of many during the day in the life of someone with ME.
But before you can start your day of course you have to get out of bed. Now many people will lie in bed thinking about whether they want to get up or not. Not many people lie in bed thinking about how they are going to get up. I do. On bad days anyway. On good days, if I've been sleeping well for a while and have some energy to spare I can get out of bed reasonably easily. Even if it means forcing myself to find the energy, which is counter productive as I suffer for it later. On bad days it's a whole other story.
Imagine waking up and you can't move. Your whole body feels like lead, lifeless, heavy, immovable, like gravity has increased somehow in the night. After a time you can maybe open your eyes, perhaps wiggle toes or a little finger. Good! You wait. After a time you can turn your head. Great! Wait some more and the arms feel like they're less heavy, so you try moving them. Yes! Success!
The body is still lying there like a beached whale, but things are improving. In time you can wriggle a bit but the legs are still lying there, two great lumps of meat. Oh you can feel it if you touch them. They aren't numb. Just going nowhere. Eventually, after what feels like an eternity, you can move them a bit, slide them around on the bed. The beached whale has gone, to be replaced by an elephant seal. Things are looking up!
That's when I wait until I start to feel my bladder. When I feel that it needs emptying I know my body has finally woken up and I can make it off the bed to stagger with still wobbly legs to the bathroom. Rather like a mermaid newly transformed who isn't used to having legs yet.
This whole procedure can take up to an hour. For me it's never a case of do I want to get up. I have never enjoyed just lying in bed doing nothing. But now I spend most of my time reclining or lying, occasionally sitting, and rarely walking. Boring? Yes, it can be, though I have my computer and books and so on to stop me from going stir crazy. And I write.
Every little thing has to be thought about, things others take for granted, things I once took for granted. And this with a brain that is itself compromised. Short term memory is crap. Sometimes I feel like I'm developing dementia but I know it isn't that. It's just ME. Just, she says. Right.
Yes, I know there those much worse off than me, some who can never leave their beds at all, who can't stand any noise or light, have to be tube fed, or are stuck in hospitals being treated like criminals. I am extremely thankful that my level of disability allows me some modicum of independence. I would go crazy otherwise, not being good around people. I am thankful that I have a home, a pension which allows me to eat and buy the essentials, a daughter who cares even if she can't visit often. Maybe it's being thankful for those things that keeps me going. The big things. But the little things? Those are a nightmare.