My Bank Holiday and M.E

Some days I just want to sit under a tree.

This is the Bank Holiday day we always dream of but very rarely see. Powder blue sky, lush green trees at the height of their vibrancy, parks full of string bikinis, string vests, local boys impressing local girls with too-loud music, bare stomachs and alcopops. Footballs thumping, frisbees whizzing, glasses chinking, pubs pumping out sunny tunes, grateful to be cool and only serving a spattering of shade-seeking gin-sipping patrons. The feeling of rest and play is palpable and infectious, as if work was just a distant daydream away…

For me, it really nearly wasn’t any of that. It was in fact, very nearly, a too close-for-comfort “bad day”, a bad, treeless day. You see, I have M.E. Or, as we now all say, I “live” with M.E as if in some reluctant co-habitation arrangement.

Wry criticism aside let me get back to my day…

I stopped functioning for a while. I knew I had already overdone it, passing way past my point of no return when only one outcome was inevitable. I had given myself the Sunday to recover, as always expecting that would be enough. Surprisingly – although why I say surprisingly as that is an inappropriate use of a word employed to indicate a change in a story, where in fact here there is no change – I was not recovered when I woke up that fine Monday morning. My body did not want to work. My blood was filled with lead, each blood vessel forcing its way around my veins, each one standing up as if congested with impatient travellers. I could move but only under extreme protest and each movement felt wrong and uncertain. Not only that but my brain couldn’t make sense of anything. I had wanted to go to the park but I couldn’t figure out how to do that, what I would need to do, to pack, to tell my husband. My mind had been completely emptied of any data and just. Stopped.

My poor husband tried to make sense of the world for me. I could see that he looked as helpless and confused as I did but I had lost the words “helpless” and “confused” and the concepts from which we derive their definition. All I could say was “I want to sit under a tree”. My life had become distilled into this one desire and seven tiny words. There was no past or future plan, just the singular motivation to find that tree.

Without fail, the experience I have managed to describe above from the position of returned energy and thought processing, takes me by surprise. Despite the relentless see-saw of crash, recovery, crash, recovery over the last 28 years I fall for M.E’s charms during its dormancy EVERY. SINGLE. TIME

“I’ve progressed”. “I’m better now”. “That was then”. “I have stamina”. “I’ve got it sorted”. “Under control”. “I know what to do” – these are all insane comfort statements I have made to myself since my late teens and then, of course, surprisingly (except, as we know, not really) bang, crash, thwunk, down I go.

What is they say about the definition of insanity? Yes I get that although I do know I am not actually insane, merely deluded. Fooled on a regular basis that I one of those “norms” as a fellow M.E friend calls the suitably energied – those that can occasionally overdo it for a few days without the need to take to their bed for a few weeks in return.

Ah but this time, I really do think I have it sorted. At least I think I have the living bit with sorted. I am still here, picking myself back up, building up yet again. Bit by bit I’ll keep moving, knowing for me movement no matter how small is key to improvement, I’ll do a few steps, then a few more until I get right back to the familiar point of no return ready to do it all over again. It’s ok really, I am not scared or upset or even frustrated. This is my norm, my own unique rhythm of purpose and action. It’s how I get things done. Up, down, crash, boom, once more with feeling…

I’m ok because I know that I am one of the lucky ones. My version of this pernicious pest of a disease is what is known as “mild”. I did get to sit under my tree and will get to sit under many trees in my future. It may have took more effort to get there than the time before but I found a way and caressed each blade of grass with my bare toes in deepest gratitude. It could be so much worse. I get to live with my co-habitant as an inconvenient, infrequently rude and unpleasant houseguest, no more than that. My life continues (mostly) unabated.

Severe M.E is a whole different beast. There is no impoliteness, no inconvenience, no occasional blips, just a raging, unending, life-sucking monster wreaking havoc with every bodily system it can find. My brothers and sisters living with severe M.E don’t get to sit under trees, nor are they likely to find the words to bring that desire into being. For the majority of their lives those with the most severe form don’t get to live but to exist, trapped inside their corpse, sometimes with thoughts for company when the energy of thought does not exhaust them. The majority are bound to their bed not by any shackles but by the disease itself. They can be stuck in this half-life for years and add to their tragedy, a mechanically-minded medical profession choose to admonish them with labels of “conversion disorder” or severe depression. I have lost count of stories of those who were once trailblazers, go-getters, athletes and warriors who somehow a section of furrow-browed psychologists believe they chose their fate. I weep, I despair, I rant, for them.

Then I remember how lucky I am. I get good days, I get to live, I get to write. I get to share my pain, my love of trees, my bank holiday day.

I get to tell you that if this isn’t you, then you are blessed.

This week (7th-13 May 2018) is M.E Awareness week. I have added some links in here if you would like to know more. I urge you to watch Unrest by Jennifer Brea who whilst living with M.E has brought our condition to the attention of the world. Watch it, share it, talk about it. If you are not affected by M.E yourself I have no doubt that there will be someone around you who has been. Those with mild M.E don’t always share for fear of judgement in the workplace and friendship groups. Listen to someone with M.E, ask them how it feels, what you can do. And the next time you are sitting under a tree, remember us.