• Hochiwich - My Story (Or Part Of It)

    Twenty seven years ago I was married, with three teenage children, three dogs, two cats, very active and fit. It wasn't a happy marriage, dysfunctional you would call it, but I coped, more or less, went running most days, apart from dog walking and running around after my husband and kids, shopping - all the usual things you do. And then one day I developed what seemed to be 'flu, or somethng like it. Couldn't drag myself off the sofa. I felt like lead. It's hard to remember it properly now, as this happened in 1985. I couldn't stay in bed, that wasn't an option, but a young man I knew came round and made me the odd cup of tea and put the vacuum round, which helped. Naturally it caused gossip but I was well used to that. After a few days I felt a bit better and managed to get to church on the Sunday, where I found out that this virus had hid the town badly. I was told not to try to get up too soon or it would return with a vengeance. Well, it was a bit late to tell me that by then and yes, it did hit me again.

    That was how it was for some time. Coming and going. Trying to carry on normally with periods of total exhaustion. This was during the final year of my marriage. Within a year I simply couldn't cope any more and left to live with a friend. The children were pretty much adults so I didn't feel I was neglecting them. One was already married, and one lived abroad. I went on a job scheme, working part time to get £10 on top of the normal dole money, but very quickly found that I had to spend every weekend in bed in order to do it. I had no idea why I was so exhausted, although an ex-nursing friend told me it sounded a lot like what she knew as the Royal Free disease she had seen when working at that hospital. Doctors I saw were worse than useless. After some months I had to have a hysterectomy and that really did for me. Apart from complications and the hospital managing to almost let me die I was totally done in afterwards, added to which the stress of my marriage hadn't stopped with me leaving. My ex kept showing up trying to persuade me to go back, saying the remaining son kept trying to kill him. Not what you want to hear, is it? Hardly a pleasing prospect to go back to. There was no way I would anyway, so I didn't.

    The friend I was living with wanted to move right away and that seemed like the best bet so I went with her. I still managed to get to church most weekends, though did little else, but I was being hassled to find work so I went to college to do a "Women return to work" course, to show willing.
    Trying, at least, though I knew there was no way I could hold down a job. They persuaded me to try for University which, to me, was like flying to the moon but amazingly I did and got a CPHE and a place at a nearby University. My friend was still doing all the physical work, which was hard on her of course, but I had little choice. Periods of total exhaustion would put me in that "lead jelly" state, as I called it. Over time I lost the ability to sing or dance, things I'd done all my life and enjoyed hugely. I moved to be very close to the University during term time, a very short walk, and spent weekends and holidays with my friend. However, towards the end of the three year course she decided to go off with her new lover and left me to my own devices.

    That was in 1995 and I've lived alone since then, though I did get a cat, rehomed, for company. If I'm honest she is a mixed blessing. The company is nice but being plagued to feed her when it's hard to move off the couch is a problem. And having the littler tray to deal with - she rarely goes out either now. I've had the occasional man friend, though I found that none understood my limitations and I would be left exhausted by trying to go out and about. Going out meant that I even lost the ability to talk and I'd hit that brick wall, as athletes put it. So now I am resigned to being a couch potato, living online. Luckily I can get my shopping delivered, since I can no longer go shopping, and most things can be bought online. It's true, you don't always get what you ordered or expected but on the whole it's ok. I do have to lie down a lot, even getting up to make a cup of tea makes me shaky, but there it is. Housework is impossible. I do try to keep on top of the washing up when I'm well enough to cook or eat. Some days I don't have enough energy to even digest food, no appetite, but soups or smoothies aren't too difficult to prepare and keep me going.

    Treatment? Doctors offered none, my doctor still calls it chronic fatigue. I haven't the strength to argue. I used to argue with specialists I saw who either told me I was depressed or said it wasn't worth doing more tests, but it got me nowhere. Instead I researched online and found out about various supplements which were said to help. The brain-food ones in particular made a huge difference. Soon after taking those I began to sleep properly again - something I hadn't done for years. Real sleep, with dreams, and waking feeling alive. That was like a miracle. I still take them, most days, when I remember. I take other things too, along with supplements for arthritis and other health issues I have. Last year a lump I'd had for years started growing very quickly and was deemed to be a phyllodes tumour - don't worry, most doctors have never heard of them either but it's a very rare type of sarcoma. I have tried to avoid surgery on the whole, though I did have to have a knee stabilized in the nineties due to hypermobility syndrome AKA Ehlers Danlos Type III. I'd fallen and broken an ankle so they said it was necessary. Anyway, last year I had to have this thing removed and fortunately recovered well, or as well as can be expected.

    So, I sit or lie on my sofa, live online and take my supplements like a good girl. Trying to do more just leaves me exhausted and my heart doing stupid things like losing its rhythm. By doing virtually nothing I cope, more or less. I don't have visitors on the whole. It's far too exhausting and leaves me needing to sleep the whole time, and then who sees to the cat? It's just not worth it. Four years ago I discovered Second Life, where I have found some friends, mostly abroad, and a special friend in Vienna. We talk in Skype when he gets time. It's not like having a real boyfriend of course but I couldn't cope with a real life relationship anyway. I rarely see my family. I have a sister and brother but never see them. I have three children with children of their own - ten grandchildren and two great grandkids now too, but they are all scattered and anyway my house isn't in a fit state to have them visit. On the odd occasion my daughter manages to get here with her two youngest it just leaves me exhausted. I've been asking her to get Skype for years now so we can at least say hello face to face. Maybe she will one day. You never know.

    In the meantime I have my online friends and my cat. She's getting old too and has health problems of her own, so I don't know how long she'll be with me. I have to have annual check ups to make sure the wretched phyllodes hasn't come back. So far it's all clear. One down, four to go. I try to eat as healthily as I can and have the occasional treat. What do I miss of my old life? Oh… walking in the countryside, dancing, singing - alone or in choirs, the sound of bird song, starry skies, going shopping, the list goes on but I prefer not to think about it. Instead I try to count my blessings: I have a roof over my head and food in the cupboards. So many people don't even have those so I count myself blessed that the government sends me money to live on. Without that I dread to think what I'd do. Sometimes it feels like I'm just treading water, waiting around to die, but other times I enjoy what I do in Second Life. In many ways it has become my only life so I'm very grateful for it. That and the television, where I can watch travel and wildlife documentaries, a poor substitute for being out and about, but better than nothing. And comedy, a must when you're alone and housebound. I try to watch at least one every day. Laughter is so important. It keeps me relatively sane, although there are those who would question that perhaps.

    I've lived a lot in my 68 years, one way and another, and this has been just a few snippets, obviously. I didn't go into the whole business of symptoms. Most people here will know those already and it's depressing to go on about them. I hope this story has given some idea of who I am, and where I am in my life - or what's left of it - and maybe it's been interesting.