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Hear us

One of the key problems for sufferers of Myalgic Encephalomyelitis is that we are ignored. Our illness works against our ability to be seen and heard. ME is a difficult enough condition to try to explain to people, but trying to do it whilst exhausted and confused makes the task near impossible. Making public displays and being seen and heard in the community requires energy and many sufferers are unable to tolerate the noise and  brightness that would be required to do something as simple as be present at a demonstration.

There was a time when I thought that all we needed was to have someone famous develop ME. Not that I’d wish it on anyone, but it seems that once a celebrity develops an illness the media are all over it. I realised after a while that it wouldn’t matter. There have been several celebrities diagnosed with ME including one of my idols, Michael Crawford. There’s plenty of interest in stories about these people but how good a story can you really make about someone lying in a dark room, without the energy to talk to you? We can’t fight our own battle, and the medical and governmental personnel that decided years ago to back the wrong treatment can shout louder and be seen. All we can do is rely on others to fight our battle for us. The people who have lived with the illness and managed to recover, the people who have cared or are still caring for severely afflicted ME sufferers or the few medical professionals that continue to fight for a cure.

Recently an hour long documentary film was produced in the UK by Natalie Boulton and Josh Biggs  – the mother and brother of a severe ME sufferer. It has been assisted by many people giving their time and skills voluntarily to help us be heard.

You can find their official site here. Please help us be heard.

 
 

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People with ME/CFS don’t have a sense of humour

Today I saw yet another media article about ME/CFS and whether the condition was real.  There is nothing unusual about this, each week another handful of these are written.  The thing that made me write today’s post however, was a comment response to the article that said that people with ME/CFS don’t have a sense of humour.

He is entirely correct.  Where our health is concerned, ME/CFS sufferers do not have a sense of humour.  There is a very good reason for this.  Every week since my diagnosis I have watched new articles released in newspapers, magazines, blogs or on television all looking at ME sufferers and how convenient it is that none of their illness can be proved.  Occasionally a positive article will slip through the net describing realistically what it is like to struggle through each day with such a debilitating illness, or that gives a positive reinforcement to the neurological/physical aspect of the illness.  These positive articles are extremely rare, however, and the media as a whole seems to continually spawn articles that confirm in the eyes of the general public that people with ME/CFS are lazy, lying hypochondriacs or are in some way mentally impaired and requiring psychiatric treatment.

For a physical, neurological illness.

There does appear to be a distinct lack of articles telling the sufferers of other severe debilitating physical illnesses (like cancer for example) that they can be cured with a little psychiatric treatment, or advice articles telling people with AIDS that its all in their head and a little bit of exercise and self-esteem would make it all better.

Of course there aren’t articles telling the world that sufferers of Multiple Sclerosis just need a bit more fresh air and exercise and to stop being lazy.  That would be considered rude, politically incorrect and insensitive.  Yet ME/CFS sufferers have no such considerations as many of these articles or documentaries are backed by medical professionals.  If only we could cure all the cancer victims in the world by telling them they aren’t really sick.  We can’t.  Just as we can’t cure the ME/CFS sufferers by doing the same.  It is socially acceptable to continually belittle and demean the sufferers of this misunderstood illness which has already taken much of their life away.  How dare they not see the funny side?

I don’t have a sense of humour about ME/CFS, just as I wouldn’t find jokes about AIDS funny, especially if I were HIV+. Surely that is a natural reaction?

 

 
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Posted by on April 5, 2012 in Myalgic Encephalomyelitis

 

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The insubstantial enemy

For me, the most difficult part of ME has been an inability to fight back.

In the past, if something has upset me, I deal with it.  If a situation isn’t working, I fix it. I’ll admit that sometimes I get lazy and it may take a little while for me to change the situation, but I don’t feel comfortable if things are wrong and I don’t at least try to do something about it.

But where do you start to fight with ME?
I’m a social person at heart and feel miserable when I get lonely.  Yet having people visit me becomes exhausting incredibly quickly.  At the weekends when Mr Wench is at home and awake during the daytime, I become so tired just from the extra person being there or the noise from the television in the background.  Going out to visit other people now tends to require me to use the wheelchair, and although this means I can buy a little extra time to add to my mental strength at the cost of my physical strength, it still only grants a short visit and of course ensures that I will spend the next few days at least unable to move.

I’m a terrible patient.  I get frustrated and impatient very quickly and I like to be able to do things for myself.  I watch my body getting weaker each month and want to exercise to reverse the damage.  Yet exercising even just a small and gentle amount makes me more exhausted and the resulting recovery time leaves me more deconditioned than I started.

How do you fight an enemy that cannot be fought?  You can’t work at getting better, as the effort you put into recovering worsens the condition.  I find that in an odd sort of way I feel relieved on the exhausted days.  On the bad days there is absolutely no denying in any way at all that I am physically ill.  I can’t fool myself into thinking that I just imagined it and that there’s not really anything wrong with me.  On the good days that is more difficult.  Having to stop before symptoms are in control means that it is easy at times to wonder if you are just under some delusion.  The days where you misjudge the energy you had and go too far are almost reassuring.

Thank heavens for technology!  I think I’d go crazy without the internet enabling me to contact people.

 
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Posted by on September 27, 2010 in Myalgic Encephalomyelitis

 

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I cried like a baby

Its been a hell of a week!

Firstly, my computer decided that it was going to give up the ghost and spectacularly fried the hard drive.  My computer is my lifeline to the rest of the world as I can’t just get up and go see people, so it left me feeling a little isolated.

To add to all this though, I woke up yesterday and my finger was itching and red and very uncomfortable.  After the best part of an hour, I managed to finally remove my engagement ring in case it got any worse.  I most definitely did not want to have to have my engagement ring cut in order to remove it from my finger.  After another hour or so the swelling had subsided to enough of a degree that the cause was apparent: I had gained enough weight that my ring would no longer fit my finger.

I was devastated.

Suffering from CFS (ME) is very frustrating for me because you can’t just work harder at getting better.  Lack of exercise is gradually de-conditioning my muscles and I am gaining weight.  I can’t actively exercise as this uses even more energy that I just don’t have.  I have a series of exercises given to me by an Occupational Therapist from the CFS group at my local hospital, but these are just tools to try to prevent my muscles from wasting away really.  Much more than that is currently out of my reach.

I had spent many of my sessions with my doctor discussing the weight gain that I had little control over and she had reminded me that I’d lost it all once before and that when I have recovered from the CFS (ME) I can lose it all again, and that there wasn’t really any point in worrying about the things I can’t really change currently.  But now my ring doesn’t fit.

Mr Wench came home from work to find me bawling my eyes out.  I’m not talking little lady-like tears here, I’m talking full on, nose the colour of a beetroot, uncontrollable hysterics.  I know that not being able to wear that ring makes no difference to how much Mr Wench loves me, or how much I love him.  We have put our wedding on hold for so long in order for me to be well enough to participate that not being able to wear my ring was just one more in a long list of frustrations.

But it was my ring.  Its beautiful.

And every time I glanced down at my hand and saw that little flash of light reflected from my ring it made me smile.

Now it is tied around my wrist with a piece of string but it isn’t the same.

I know its silly to get so upset over such a trivial thing in the grand scheme of things, but it was one of the few things I could count on to lift my mood on a bad day, and now our wedding just looks further and further away.

 
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Posted by on March 10, 2010 in Random

 

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Don’t they know it’s the end of the world?

Yesterday was one of the days that I term “bad days”.  Everything ached to the point where it was too painful to move.  My mind felt confused and fogged and could not settle on any one thought for long and with no sort of clarity. On days like this there is nothing I can really do.  I can’t just push through it in the hope that it wears off, as it never does, and instead means that I will have several days like this in a row.  I can’t focus the muscles in my eyes enough to use the computer or watch television.  Noise is just irritating and makes my head hurt.  I gave in and spent the day laying on the sofa, occasionally playing a song on the MP3 player and then resting for a while before trying to listen to another one.

I was feeling rather frustrated and miserable, which really isn’t uncommon for me on days like those.  I don’t suffer from depression, but I defy anyone finding that yet again they are constrained to a day on the sofa with little that can entertain them to be happy about it.

One of the songs that I listened to became today’s title because it hit a nerve.  The song speaks of a person’s entire world ending because they have lost the person that they love and the amazement that nothing has changed for anyone else.  That your world has come to an end, but that everyone else doesn’t notice.

Don’t worry, I’m not about to tell you that Mr Wench and I are going our separate ways.  For me though, it does feel that a large part of my life has ended, or at least been put on hold, probably indefinitely.  I can’t spend evenings hunched over a sewing machine enjoying creating myself a new outfit, as I can’t concentrate on it for long enough and I make too many mistakes as well as struggling with the physical capability of sitting at the machine for any length of time.  I cannot sing, as my throat muscles tire too quickly and my voice constantly goes out of tune, much to my bitter frustration.  I can’t dance.  I guess that is obvious as that is pure physical exertion, but something I had loved doing.

The problem is that the world hasn’t ended for anyone else (except perhaps poor Mr Wench, struggling to look after me and keep me sane).  I watch the people I learned to dance with going on to perform wonderful dance shows. New dancers learning, surpassing me and going on to enjoy their performances.  Friends getting married and starting new families. Lives carrying on…

I’m just a stranger looking out at it all now.  People can’t sit back and not get on with their lives just because mine is on hold.  I wouldn’t want everyone to stop their busy lives either, not really.  I sit here trapped in my limbo, chatting through the faceless internet to the friends that I once spent so much time with as I cannot cope even with the limited strain of a phone conversation.  I keep myself happy with the thoughts of our wonderful wedding plans, that in reality we both know is unlikely to happen as I am just not physically capable of that level of social interaction currently.

Don’t they know it’s the end of the world? It ended when I got ME.

 
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Posted by on February 24, 2010 in Myalgic Encephalomyelitis

 

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