I've been away for a while (bar the previous post) and have been really struggling for a while. Well, a few years really. I recently felt moved to share and write an 'essay' for M.E. Awareness which is coming up next month. As it has been shared already I thought I'd add it here too. I know my blog doesn't get hits galore but I look at more like a record for me and this needs to go on my record.
“ME/CFS Awareness Day, May 12, is fast approaching, and I am inviting all ME/CFS sufferers to participate in a collective creative action that we will share with the greater community!
Simply create a beautiful sign/image in your own artistic style/chosen medium with a simple statement to the question "what’s the first or most important thing you would do if you were well again today?" - then take a photo of you holding it.”
Simply. Simply say what I would do first, if I was well. I don’t know. Now I wish I hadn’t read this simple question. I normally duck out of ME awareness and publicity, why did I even look this time? I can’t un-see it and I can’t un-feel the feelings I felt as I realised I don’t know what I would do if I was well. I’ve been ill for so long that I simply don’t know what I enjoy doing.
I fell ill in February 2000. I went back to school for the first day of the new half term, came home and slept for 2 weeks. I was 14. I had spent half term doing things with my group of friends. We went on a train to the nearest bowling alley. We had ice cream. We played basketball. We sat around doing nothing but chatting. I rode my bike, I played my flute, I did my homework, I went to church, I hung out with my Mum. I didn’t think about what I was doing. I didn’t think that those days would be the last carefree days I would have.
Twenty one years and three months later and I’ll do a quick recap of what I have missed out on...
Learning to drive, sitting a driving test, failing the first and passing the second... or would I have passed first time? Or taken months to pass?
Sitting A levels.
Possibly university – moving away from home into halls or digs, studying, meeting new people, graduating.
Possibly going straight into work – an apprenticeship? Training courses. Working my way up the ladder, promotions, leaving one job for a new opportunity.
Concerts, sports events, festivals, fairs, plays, holidays.
Friendships, relationships, boyfriends, break ups, a fiancé, a wedding?
Moving out of my parents’ house and living independently.
Saving, renting, buying, mortgage, financial decisions.
Starting a family, and every adventure and hurdle that brings with it.
And I’m sure many more simple things I don’t even realise I have missed out on.
I’m about to turn 36. The differences between a 14 year old and a 36 year old are huge. I knew, then, what a well 14 year did. I don’t know, now, what a well 36 year old should enjoy doing. All I know is being trapped with a body that doesn’t do anything active without major consequences.
I’ve found the online ME community to be counterproductive for me. Seeing others suffering hurts me, I’m an empath. It can bring me down into a spiral and so, I don’t join in. I’m well aware of the opinions, the fake cures, the lightening process, PACE failure, medical apathy, the suffering of millions. Reminding myself of it daily when I barely have the energy to get through those 24 hours, focusing on the reality... it has never been helpful to me. So when someone asks me to write a sign I would just hide.
Perhaps it’s time to stop hiding. So what will my sign say? What does a well 36 year old do? Well, it’s been 5 days now... yes, the words above have taken a full five days of energy and brainpower... and I still don’t really know. Move around without having to think of the physical consequences. To do something – anything – without evaluating how much energy it will take and what the impact on today, tomorrow and the rest of the week’s health will be. Have a shower without help from a carer. Go outside. Not think through every possible outcome and have the supplies needed to deal with them all – blankets, painkillers, drink, safe snack, clothes that don’t catch in wheelchair wheels, shoes that are flat and light, a destination that is accessible - flat, not gravel covered paths, quiet and not too busy or full of hustle bustle, hat, sunglasses, eye mask, ear defenders... the list is almost as long as the list of things I have missed out on!
I’d like to walk outside.
I’d like to make my Mum and Dad a meal and sit at the dining table and eat with them.
I’d like to phone a friend and chat without giving myself a headache and constantly clockwatching to make sure I don’t overdo it and end up not being able to sit up tomorrow.
But these seem so overanalysed and negligable... insignificant or insubstantial almost... things that everyone else does daily without a thought. Not “sign-worthy enough”.
Maybe, for my simple sign I’ll just choose “to play with my nephews”. To run, to chase, to kick a ball, to laugh... the kind of carefree activity that I wouldn’t have given a second thought to 21 years ago.
This was first published by Chronic Market who'll be featuring lots more stories from M.E. sufferers in the coming weeks.