Person with ME


My name is Christine. I'm 63 years old now but I was only 41 when I first became ill with this disease we call M.E.

I was a wife and mother of three teenagers, one already married with a child, when I developed what we thought was a nasty case of 'flu. Unable to crawl from my bed or the couch, I was left to get over it as best I could. I seemed to recover and got up, only to crash again within a day or two.

This time I stayed inactive for as long as I needed but once "well" I found this to be how it continued. Trying to live a normal active life, and it was active with three dogs, two cats, a demanding husband and his business and two teenage sons to take care of, as well as being an active church member, then crashing again.

Before a year was up I had left the marriage, with all the attendant stresses that brings, and continued in the same vein, with the periods of wellness getting ever shorter between crashes which lasted longer each time.

A nurse friend told me it was very like something called Royal Free disease she had witnessed when she worked there. So I started to look into it and determined to rest now instead of "getting fit" as the doctors had been advising.

Like most sufferers at that time, I was asked if I was depressed, underwent batteries of blood tests, etc etc with no answers forthcoming.

I was living on basic Income Support and thankfully with a female friend who did her best to take care of me in the bad times, but to avoid having to take on a job I knew I would never be able to hold down I went back into education, and managed to get a place at University, eventually gaining an honours degree.

Although I was now living just a few yards from the main building it was still an enormous struggle to get there each day but one way or another I got through it, only to have my friend leave me and the area, abandoning me to my fate.

It was at this point I had a breakdown and was admitted to a psychiatric ward for a time, for my own safety. Other serious family issues had added to the mix I must admit, as well as a now diagnosed personality disorder.

Since then I have lived alone, far from family and having no friends, and in a very inconvenient location. Over the years the stresses have taken their toll and I can no longer walk more than a few yards without resting. I now rely on the internet for all my needs, including friendship.

In my youth I trained and worked as a dancer and singer, and led a very active life, but now walking is a struggle and singing almost impossible, without the ability to sustain breathing. The frustration of that alone is sometimes more than I can bear.

The loneliness is overwhelming at times but I keep going, mostly for the sake of my cat who is utterly devoted and pines without me. It isn't much to live for, not really, but it's better than nothing at all.

I relied on arts and crafts for a long time to stay sane, as well as writing poetry, but have now reached a point of spending most of every day asleep, as well as the nights. It's incredibly boring but I have little choice in the matter.

In case anyone wonders how I now manage to sleep, when restful sleep evaded me for so many years, the answer is that I found a regimen of supplements that worked wonders for that if nothing else. So I sleep, and wonder if my body is healing myself while I do. So far it isn't do a great deal.

Periodically my heart seems to be failing altogether, becoming very weak and erratic, at which point I take a short course of herbal heart tonic capsules which help to normalise it again, for a time.

I haven't seen a doctor in years. It doesn't seem worth it, somehow, as they have no answers and, besides, I can't stay upright long enough to make it to the surgery. I become light headed very quickly now and have to lie down before I fall down: something else that used to happen on exertion and which now happens all the time.

So I just keep on going downhill and sometimes wonder where it will all end. In bed, alone and incapable of even the little I manage now? Dying alone with only the cat to notice? Not a pleasing prospect. However I recently started on some new supplements to avoid the really dark days of depression and they seem to be helping. They do something with seratonin levels apparently. And I have a light box for the more literally dark days.

And so it goes. Researching online, trying pills and potions, practicing chi kung breathing exercises and sleeping. Eating, washing and dressing are more of a luxury now, rather than the essentials they once were but I have a few friends to email daily, which is so vital. I'd be totally lost without my computer of course, having no other recourse to the outside world. I am so grateful for that and for the little things I can still do.

If anyone reads this who is thinking of giving up the struggle all I can say is, please don't. Life goes on, however much of a struggle it has become, and who knows what's round the next corner? I still live in hope, however faint, of something happening to change my seemingly useless life.