Sunday 11 May 2014

National ME Awareness day

No pictures of paintings today, just this blog post.

If you're a regular checker-inner of canvas and paints you may well have noticed I have ME; Myalgic Encephalopathy to give it it's full name.

I've had it for almost 9 years now - I was on a cycling holiday round North Wales when I started with what I thought was a bad cold/flu. I've never recovered.

It's a mainly invisible illness - invisible because you can't easily tell that there's anything wrong with me if you see me sitting down on a good day. Invisible because on a bad day I can hardly make it downstairs let alone go out, so I'm invisible.

Why am I telling you this? To get you to think about invisible illnesses and the assumptions we all make. To get you to think about the impact of cuts in the UK - disproportionately affecting disabled people. For pity? No - what's the point of that? You can't eat pity, it doesn't heat your home, doesn't help you walk.

What does having ME mean to me?

Nine years ago, an average week saw me swimming a mile, running 2 miles and cycling around 60 miles. I also went circuit training, worked out at the gym and lifted weights. I wasn't muscly, but I was strong and fast on my bike. I used to do a cycle ride for the Christie Hospital in Manchester every year, cycling 57 miles to raise funds for them.

Then I caught that cold/flu. I got lost on what should have been a 30 mile afternoon's ride, ended up riding about 35, and feeling dreadful from about half way.

Now, walking up and down stairs exhausts me. Doing the food shopping causes uncontrollable muscle spasms in my legs and causes significant pain (despite the anti-spasmodics, anti-inflammatories and painkillers I take). I was on morphine patches for the pain - they were brilliant at first, but my skin breaks down too quickly so I've had to stop using them. 

Some days it can take me 2 hours to get up, shower, dress myself and make it downstairs. Some days I'm too tired to shower, so I sit on the loo lid and wash. My memory is shot - I can be told the same thing several times and have no recollection. I forget words and talk drivel when I'm too tired. I lie on the sofa lots, just resting, specially on a Thursday. I rely on my family and friends to do so many things for me, things that I used to enjoy doing, and some things just cos they have to be done. The glands in my neck are often inflamed and painful; I ache all over; I get bone-numbingly tired, so tired that I can't eat as I'm too tired to chew or swallow.

I walk with a stick, and if I'm walking more than a short way, I also walk with a gutter crutch - I can't hold a stick in my left hand, so I have a crutch that velcros onto my arm instead. My disability is fairly obvious because of the stick/crutch combo, and because of the speed I walk - well, lack of speed if I'm going to be accurate. For years I've hidden that I have a crutch as well, as I'm almost ashamed of needing it. Ridiculous.

I have friends who also have ME; they've experienced discrimination due to having invisible disabilities, I have too, and it's rotten. Think about what that must be like, even for a minute. People look at us funny. People make comments about us even though we can hear their mean comments. People treat us differently. People stare. People push past us. People try to push us over. People ignore us. People target us. People think we're scroungers. It happens regularly. (Thank you Cameron, Osborn, IDS, Daily Mail. Not.)

My fears for the future include never getting better, slowly getting worse. They include not being able to hold down a job (I currently work 3 days a week in the NHS as a Learning and Development Facilitator). This job is why Thursdays are so hard - I work Monday - Wednesday; my husband makes dinner on those days, and often on others. I try to spend Thursdays resting so that I can do something on a Friday. I'm fortunate to be able to work. Many people with ME are unable to - either because they are too ill, or because they cannot find suitable part time work. My employer is very, very flexible, and values the work I do. This government lied about the help I would receive to get into work (I was made redundant and didn't have a job for a while). This government have cut the Access to Work budget without publicising it - this money is supposed to help disabled people into work. It didn't help me. This government are scrapping the Independent Living Fund - the fund that enables severely disabled people live independent lives. It will cost more both in £££s as well as the impact on individuals to stop this fund, but it's an ideological cut.

Do I feel sorry for myself? No, not really. I get fed up at times, but being sorry for myself doesn't help anything change. Do I get cross or sad? Sometimes - I'm human, not superhuman, and I have grieved for what I've lost. Life expectancy for those of us with ME is 57 years. That scares me.

What else does having ME mean to me? are there any positives?

Yes - for a start, I paint! I run canvas and paints, something I would never have done before. I have to rest so much, and painting is something I can do even when I'm a bit tired. 

I've had to slow down. I have more time for other people because I'm not busy rushing to do the next thing.

I've enabled people to feel good about themselves by letting them help me - I have to ask total strangers for help sometimes - they walk away feeling good about themselves because they've been kind to someone. I never used to let people help me - I'm stubborn and quite bloody-minded, and was always the helper. Now, that's reversed, and although it can sometimes be hard, it's also really positive because it blesses others.

I campaign online - once over I'd have been on the march, the picket line, the barricades. I can't do that now, but I can email, sign petitions, publicise stuff.

I support other people in their struggles with disability as well as receive support from others.

My life is a charmed little bubble, where I am loved and love; where discrimination and intolerance get short shrift; where I am helped and am able to help.

My hopes for the future?

A cure for ME. There has been some interesting research in Norway with a chemotherapy drug that's had some success. There may be a trial in the UK. There's been some research about what's going on in our bodies at a sub-cellular level, in the way our mitochondria release, reabsorb and re-release energy.

One day I might recover. Til then, I'll hope.

Possibly useful sites:
ME Association
Action for ME

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