A short history of My ME

I chose this time to start my blog over any other year in my illness because I have recently had a serious relapse - my worst in 3 years. Relapses are a sharp kick in the balls for anyone with ME because they negate any progress you feel you have made.

I had begun to think I was perhaps getting better properly, steadily but surely taking on more things and learning how to pace myself and make the most of what little energy I have. Pacing is the religion I have to live my life by. Spontanaeity is a foreign word to me because it costs me so dearly. If I try to be careful and not overdo things then I can do far more than I could otherwise. An early lesson my whole family had to learn was to lower our expectations for what I could do day to day. We are a family of high achievers. We don't get ill. We dont fail. So one of us getting such an enigmatic and difficult illness was a quagmire for us. It almost tore us apart as we struggled to understand it and those closest to me couldn't find a way to see how I couldn't just get up and get on with things. I felt the same way. I was sure if I could muster the determination or balls then I would be fine to grit my teeth and carry on, but however much I pushed myself and told myself there was nothing wrong with me, that it was all in my head, getting out of bed was still often impossible.

I contracted ME as a post viral complication of Glandular fever when I was 14. I have spent my teens and early 20's - the years of our lives we are told we can make all our mistakes and find out who we are as individuals - fighting to get through each day.

GCSE's and A-Levels were a nightmare. My school was relatively understanding but it was still a bit of a touchy subject and the government were dragging their heels on an official line the state school system should take. I went in for half of the school day whenever I could. It was horrible. I was so isolated and confused. Learning about the illness, I have come to realise, is the key to managing it. I was depressed and anxious and had to see a psychiatrist. I still feel like I have been 'awkward' and have imposed my illness on my family. I was treading water all that time, fighting a losing battle and never accepting my illness and working with it because I resented it so deeply. I simply believed it would go away in a year, 2 years. Every year it was still with me made my hope and resolve crumble for a while. Some people can recover from ME in a matter of one year, others 4 years, and some never, and nothing is known about how and why. I do everything right these days, follow all the recommended treatments and still it plagues me.

I spent 5 or 6 years trying to understand and accept my illness. You have to tread a fine balance between acceptance and optimism to fight this thing. Only when you accept your limitations can you work around them, and yet if you give into it completely and let the illness construct your identity, then you are trapped by it, and I have met so many good people who never manage to get better or do anything more than lie in bed because they have let this happen. I understand how and why this happens. I know I have only managed to fight as hard as I have because I have the best Mum anyone will ever have. She has been there for me through everything. I only managed to go to university because she drove me to my lectures. She has brushed my hair when I haven't been able to sit up, she has comforted and encouraged me and I will never find the words to thank her for it and easily see how without her help I would also become trapped and defined by my disease, too scared to try and beat it because I simply don't have the energy to.

My illness, like most ME varies wildly in severity. I can get very well, very active now I have learnt more about managing the illness, but then if I overdo things, and sometimes for no reason at all, the relapses keep on coming, rendering me severely disabled and limited physically and mentally (ME seriously f**ks with your cognitive processes). Still in my mind I always hope that 'this time next year' things will be different, I will be able to live without monitoring my every move quite so carefully, I will manage to get some of the last 10 years back. I have missed out on my family, my passions, and whilst trying to live a full life, it's been a half life.

The most commonly prescribed treatments for ME are graded exercise, pacing and CBT (Cognitive behavioural therapy). I somehow combine all 3 into my lifestyle in order to make the most of my life. I will talk more about my thoughts on these treatments another time though.

My breakdown when I was 19 was the turning point in my understanding of ME. I was stressed to breaking point throughout my A Levels. My physical and mental faculties were exhausted. I ended up in a psychiatric hospital and had to build my life from scratch. Literally. I couldn't cope with the stress of even the smallest decisions and had to make lists of everything I had to accomplish each day - brushing my teeth, cleansing my face, everything. It was only then that I found a good psychotherapist who taught me how to accept my illness and how to cope with it better and life since then has been tough but fuller in every way as I juggle my disease with trying to live as full a life as possible.

So - that's a quick round up of the last 10 years - it is all business this post I'm afraid, things that I felt needed to be told until I discuss different aspects of the illness. I promise a more thrilling posting with punches packed everywhere tomorrow!