Sunday 12 May 2013

National ME Awareness Day

You may remember me posting a year ago, you may not.  Today is National ME Awareness Day.

I have ME, I've had it now for over 8 years. It has changed my life significantly, in some ways for the better, in many ways for the worse.

It's hard to write anything about this without being political - in the current climate within the UK, disabled people are being demonised by the government, pilloried in the press for having the temerity to be disabled or sick, and generally be a drain on society, whether we are or not.  There's something about how our society treats its more vulnerable members that gives a true measure of it. We seem to be failing.

I'll give you an example: last night I went to see a band I really like. I love live music, and write for another website, occasionally. The venue was standing only - I knew that in advance, and knew that would mean significant pain and that I'd find walking back to my car very difficult, and that today I'd have to rest. What I didn't factor in was the behaviour of 2 people at the gig. Half way through the set, two people pushed their way through the crowd to stand in front of me, shoving people out of their way to do so. They then repeatedly kicked my stick and pushed me to try to make me move. I asked them politely to be a little more careful as they were in danger of knocking me over. One shouted "Just because you've got a stick, that doesn't make you better than me", and carried on pushing me. I pushed back, hard, using the pointy bit of my stick handle. That was hard to do: it's not my normal behaviour; I don't like drawing attention to my disability; I felt very self conscious. Eventually they left, shouting "Lets go, it's not worth being here" into my face. I felt vulnerable. 

It would have been easier in the short term to have given in to their behaviour, and move out of their way, but I couldn't do that as that would have been accepting its ok to treat me like that. It isn't. Just because I need tools to help me doesn't mean you get to shove me around. I don't want any special treatment, I just wanted to be left alone to enjoy my night out. I did, the band were great.

Walking back to my car was hard, as my legs didn't want to bend, and getting back into my car was a challenge - I got one leg in, but the other wouldn't bend so I had to sit for a while with it sticking out. I've not been able to go to church this morning as I'm exhausted, but I have managed to have a shower and get dressed!

ME is a hidden disability. I don't look ill, even now, I just look a bit tired, but in reality I couldn't walk up the stairs right now, and probably won't be able to for hours, and am in significant pain. I have to pace myself, and work out how much energy something will take and if its worth it. Last night was, the band were excellent, and I knew I'd have to rest all day today. If it had been tonight though, I couldn't have gone, as I wouldn't be able to go to work tomorrow. I hide how bad it can be, as I don't want pity, but I'm doing that less than I used to. I used to be afraid people wouldn't believe me; that they would think ME was a made up thing, or that I didn't have it really, I was making it up. I don't care about that any more - there are more people in the UK with ME than with MS, the symptoms are similar. As I work in the NHS I have access to up to date research. Current thinking is it is a problem with how our mitochondria store and release energy, so it's a problem at cellular level in our bodies. It's no longer in our minds - it never was, but there was a school of thought in the UK that it was a mental health issue, not a physical health one. Rubbish, as those of us with ME always knew.

Despite the ME, I am blessed. I'm surrounded by people who love me, who support me and who value me. I'm able to work part time, and have enough money to live on. I have a car, which means I can go out; I can't walk far, so public transport is very difficult to use. I get to paint for people like you, who appreciate what I do. Painting has helped keep me sane - even on bad days like today, when I'm too tired to do anything else later on I may be able to paint for a while. 

So why have I written this post? I want you to think. Think about what it may be like, how it would impact your life if one day you woke up and discovered you could barely manage to get dressed, that standing in the shower hurt too much, and that you had to slide downstairs on your bum cos your legs wouldn't work. Contrast that with the 30 mile bike ride you did the day before, and the 2 miles you ran, and the 1 mile you swam a couple of days before that. Now realise that from now on, unless either God heals you, or scientists find an effective cure, that that's your life from now on. That every day you have to work out what you have the energy to do, and the cost of doing more than you can. Read the Spoon Theory. That's my life. Don't feel sorry for me, instead do two things: live your life as if every day is the day before you develop ME, don't put off doing things, enjoy what you have. Secondly, give other people a break, be a little more understanding, be a little more accepting of others' needs.

Thank you. Thank you for reading this, thank you for your support, thank you for your encouragement. 

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