May 12th is M.E. Awareness Day. Perhaps I should be wearing a blue ribbon, or covering my Facebook page in blue ribbons and appropriate hastags. Maybe I should have one of those coloured wristbands that say “Look! I support this thing!”. Perhaps, as a person who actually has M.E. and is therefore already painfully aware of it, I should be fundraising or engaging in some form of public activism. Maybe I’m a being a bad sick person for not doing all of these things, for not spending today pouring my energy into educating the masses about myself and my life and the lives of other people with this condition and how there is so little support available for us and how hopelessly difficult it is to even ASK for help because illnesses with fluctuating symptoms are so often ignored, trivialised, misunderstood and forgotten about, because people who have those illnesses exist in grey areas and fall through the cracks time and time again.
It’s not that I don’t want to do those things or don’t care about them. It’s just that having this illness has taught me that sometimes the best thing I can do for myself is to prioritise my own health, my own body, my own wellbeing. So I’m writing this, partly for the few people who may see it, but mostly for myself, because there are SO many things that I only say here, in this context, in a place where I don’t have to preface accounts of my experiences with a detailed description of what the last nine years has been like and what it all means. When I think about M.E. awareness, I think about all the things I don’t say, all the things I don’t talk about, because talking about them in non-M.E.-related spaces, in every day life, takes too much energy and too much effort, and causes too much stress and anxiety and frustration.
Having been off work all week (due to the company I work for on a zero hours contract not having any work available for me to do), I have been able to sleep when I’m tired, rest when I need to, wake up naturally, get up when my body is ready to, arrange every aspect of my existence around how I feel and what I’m able to do at any given time. In short, I have been able to prioritise my health and my needs – a strange silver lining to living with the intense fear caused by financial insecurity. I like silver linings. I look for them all the time. I usually manage to find them.
So, the other day I climbed a hill. It was not the biggest hill or the steepest hill but it was a hill. I walked slowly and I stopped often to rest. I was exhausted when I reached the top, but I reached the top. I sat down next to the reservoir I had climbed to and savoured the view I had earned (see picture above). I dipped my fingers in the clear water then I wandered through the forest for a while, mud clinging to my bare ankles, twigs working their way into my hair. I met some free range sheep and their lambs and big fuzzy bees buzzed lazily around my head on their way to the next patch of flowers. I cut my finger on a fence that I was leaning on because walking got too difficult for a moment and my calf muscles ached and I felt a familiar stab of envy when people on mountain bikes whizzed past me and when the clouds cleared and the sun came out, the light hurt my eyes. But all I could think was This is the biggest hill I have climbed in nine years and it is INCREDIBLE.
Seriously, I cannot put into words what a Big Thing this has been for me. If you read my last post which details how different a really good week, an average week, a below average week and a pretty dreadful week are like for me, you will notice that climbing a big hill is not mentioned in there once. It is an unusual occurrence (in fact, a unique one so far in my non-career as a person with a chronic illness) and when I managed it, it felt like cause for celebration. It felt like something I wanted to share. Except I didn’t share it. I didn’t talk about it. Because I knew that every good thing I felt would be shattered into a million pieces as soon as just one person inevitably asked “So are you feeling better?”.
Better is such a loaded word to a person with M.E. When someone asks if I am feeling better, my mind goes into freefall just trying to create a point of reference for an answer. Better than yesterday? Better than at 1am when I cried myself to sleep because the pain in my back and legs was so severe and unrelenting? Better than at 5am when I woke up, crying again, to take pain killers? Better than the last time I couldn’t get out of bed by myself? Better than a couple of months ago when I went camping for a night and it was beautiful sitting under the stars with my friends? Better than that alright week I had a while back when I was able to work 26 hours at home over the course of 5 days and still go for walks in the evenings? Better than that time I ended up in hospital because I was so profoundly exhausted that my body freaked out and went to war against its own cells? Better than when I first got sick and for 6 months I could only stay awake for an hour at a time? Better than before I got sick and used to get up and go running in the morning before work? Better than a healthy person? Better than a person with terminal cancer? Then I awkwardly mumble something like “I felt alright that day” and change the subject because continuing the conversation about how I’m feeling is just too much to cope with and I feel ungrateful because it could be so much worse.
The flipside to “So are you feeling better?” is a more accusatory statement – “So, you’re feeling better?”. Almost a question, but not quite, and almost impossible to respond to because of what isn’t said afterwards, but is thought and referred to later when people selectively remember that one day I climbed a hill or that one week I worked longer hours than usual or that one time I went camping or that one day they saw me wearing make-up and pretty clothes and smiling a lot. So, you’re feeling better…why can’t you get a job that doesn’t involve working from home? Why do you have problems with money all the time when you’re able to do these specific things occasionally and should therefore be absolutely fine every day and able to work full time? Why do you still say you have days when you can’t work or walk or feed yourself? Why do you need to take the lift instead of the stairs? Are you really THAT sick? Are you really sick at all? Couldn’t you just decide to be able to do things every day? Shouldn’t you be trying harder to get better? Is this all just in your head? Are you lying or exaggerating or delusional? Sometimes these things are said out loud and maybe when people say “So, you’re feeling better?” they don’t always mean it with an underlying accusation, but the thing is, when you have M.E. you become conditioned to hear unspoken assumptions because you have heard them spoken so often and they have broken you down little by little over the years.
I have become accustomed to separating my life into areas where it is not problematic to talk about the things I can do, like this blog and conversations with close friends, and areas where it most definitely is problematic, like Facebook or general chat with people who know me a-bit-but-not-really-well. I have responses prepared for when friends I haven’t seen in a while ask “How’s your health?” and I smile and say “Same as usual, good days and bad days” then talk about something else. I have responses prepared for when people who don’t know anything about M.E. ask “If you’re sick, how come you’re able to do (insert random task here)?” and for when people say “Have you tried (insert long distance science here)?”. I also have a response prepared for people who understand, people who get it, when they say “You climbed a hill? That’s amazing!”. I say thank you and I hug them and I appreciate the hell out of them for not assuming anything beyond my truth in that moment.
So that is what M.E. awareness means to me today. It means not having to explain or justify or educate. It means being able to celebrate an achievement without every aspect of my existence being judged. It means being able to embrace every part of myself and my life without the assumption that one good day or one bad day is indicative of the nature of every day. Right now, that is all I want. Not to have to separate my life into different spaces for different subjects, with varying degrees of safety for my sanity. That, to me, would be worth so much. That is all I ask for today.
As I was reaching the top of my hill (and it does feel like MY hill now), I encountered an elderly man who looked like he might have been a mountain goat in a past life. He paused as our paths crossed, tipped an invisible hat to me, and said “It’s beautiful up here, isn’t it? Away from all that?”, nodding towards the city below. I grinned and replied “Totally worth the climb”. He returned my smile and said “You enjoy it!” before continuing on his way. I whispered into the air, into the space he left behind him, “I will. I already am”.
I’d like to end with an X Men quote, because I can’t think of a good reason not to, when Charles Xavier tells Erik Lensherr, “There’s so much more to you than you know, not just pain and anger. There’s good in you too, and you can harness all that. You have a power that no one can match”. To my friends out there with M.E., to anyone reading this who can relate to any part of it, I hope this (completely out of context from when it was originally said) quote means something to you too because we’re all harnessing something inside of ourselves to make things happen. And we all have our hills to climb.