Thursday, 7 March 2013

See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:

Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.


  1. My Mum's read alot about ME (ever since my sis became ill with it). It seems the 'people who get better' are people who actually had burnout rather than ME. People for instance who work 7 days a week, get signed off due to exhaustion and then recover simply because their body needed a rest.

    And yeah you're right - it can be VERY serious. I knew a woman once with ME who nearly drowned because of it - she was lying down in the bath, slipped under the water and then discovered she didn't have the strength to get out. (Presumably it was adrenalin that saved her life).

    There seems also to be a lot of symptoms associated with ME which the medical profession doesn't acknowledge (like one woman I know whose feet would often go blue but her doctor just shrugged it off).

    And yeah people with x-ray vision are a pain. My reply to 'you don't look ill' is 'well you don't look ****ing stupid'.


    1. Hi Steve,

      I'm sorry, I only just found your comment because some bot somewhere decided that it was spam. It most certainly isn't!

      Burnt out is a description I only recently remembered myself. A few people told me I was suffering from it about three years before I developed M.E.. It was like a mild version of M.E. for me. I don't know, obviously, whether I simply was burnt out, or whether I already actually had M.E. then. It would certainly explain the Yuppie Flu label though, wouldn't it. I've always found that a horrible name. "Yuppies" were such hard hard workers; to suggest that they were pretending to be ill was simply ridiculous. People who work so hard really do burn themselves out quite a lot.

      I think another explanation for people 'recovering' from M.E., is that they had Post Viral Syndrome. PVS can be very severe! But if people are lucky it does not develope in to M.E..

      I've given up with trying to explain that people don't recover. I just say 'oh that's nice' now. I like your answer to the 'you don't look ill' question lol. I should probably adopt that rather than the defensive way in which I list other invisible illnesses.

      Kind regards,