I just can’t, I just can’t, I just can’t control my life

May 12th is ME Awareness day. Is there anything left for me to say? The regular reader knows that I woke up one day nine years ago and couldn’t move or think or begin to figure out what on earth was wrong with me. A bit of a bug, perhaps? A nasty flu? Flu is horrible.

Weeks turned into months. Months became years, and into the foreseeable distance.  I stopped expecting to back to work on Monday. I stopped hoping to get better. I lost my job, my normality, my future, and I’ve been making it up as I go along ever since.

Limbs of lead, random muscle pains, anxiety, depression, cognitive problems, constant exhaustion, concentration difficulties- years and years of it.

I’m one of the lucky ones. I spend a lot of time in bed, but I’m not bed bound. I can leave the house. Spurs Fan works hard to prevent total squalor and starvation round these parts. Girls keep an eye out for straighteners switched on, pots boiling over. Nobody complains about burnt or undercooked offerings. We are content with a reasonable level of grub and crumple.  I have good friends who ensure I have a social life, however limited. I can volunteer. I have the internet.

ME is not ‘in my head’. Two courses of Cognitive Behavioural Therapy, the anti mad tablets, and a 12 week Condition Management Programme haven’t cured me. Painkillers, a hot water bottle, a footstool, and a comfy bed are my medications. Even the social security agency accept that I’m not fit to work. Irrespective of my health, they could change their criteria at any time. ‘Control’ over one’s own life is an illusion; if we are lucky we can merely ‘steer’.

I manage by finding ways to make a difference in the world. There’s nothing dramatic about how I volunteer, but it makes me feel useful, and the results help others connect.

I manage by running away to Donegal when I can. My mind is cleared by wind, sea and emptiness. We all come back to ourselves on the beach.

I manage by reading and by exploring the outside world virtually. My current read is An Astronaut’s Guide to Life on Earth, by Chris Hadfield. Hadfield is a skilled communicator and storyteller, as well as being the guy who brought us Bowie from space. Although I read plenty of crime and pulp fiction, I like books which make me view my world differently, which make me think, but which are easily read. My brain can’t cope with academic reads; I am the mass market. I like to sing along.

Singing along is a key ME survival technique for me, despite not being able to sing. There are enough can’ts in my world.

I manage by trying to remember who I am. I am me. I am not ME.

 

For the keen, some previous posts on my ME experience…

https://memineandotherbits.wordpress.com/2014/09/29/on-being-a-spoonie/

https://memineandotherbits.wordpress.com/2014/09/18/id-rather-be-broken-than-empty/

https://memineandotherbits.wordpress.com/2014/01/24/its-not-rocket-science/

 

 

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6 thoughts on “I just can’t, I just can’t, I just can’t control my life”

  1. We must stop meeting like this, Fiona.
    I have just managed to surface to add a 12th of May blog to my once high-frequency site. I’m not doing any better, to phrase it in the passive.

    How can legs feel like lead *and jelly* at the same time?

    Well done for keeping going.

    Throwing things overboard to “lighten ship” gets as bit more tricky when you’re down to the hull and the keel. I think the rudder went some time back.

    Blog:
    http://chrisbofcabra.blogspot.co.uk/

    CFS bunnies:

    Chris

  2. Happy May 12th friends,

    It is with great pleasure today that we announce the creation of “Advocating4ME”, a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future smile 🙂

    https://www.facebook.com/pages/Advocating4ME/1606524889591699

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