My truth about ME/CFS

I never thought there was anything I couldn’t do that I wanted to. It may take hard work and perseverance but if I wanted to be a sound artist, a singer, a dressmaker, a scientist, then I could do those things. I can’t do those things. These are the things that give me a reason to live and feel fulfilled and I can’t do them, at least to the level I want. The first three are hard, the last one is heart breaking.

My heart has been broken this year, truly broken by the realisation that having ME/CFS is damaging my brain and body so much that I can’t go back to being a scientist, not now and maybe never. I can bob along being a medical writer and it’s hard as fuck at times but I find a workaround when it is. And why should I complain, it pays me well and I can do it part time and mostly from home. Why should I complain. But being a scientist to me is the same as being an artist or a singer or a dressmaker, it’s not what I do, it’s who I am. I can’t be me.

Having ME has robbed part of me and coming to terms with that is devastating. I am devastated by this especially because part of the reason I wanted to go back in to science is knowing that I have an inflammatory brain disorder and knowing how I can contribute to understanding, and hopefully alleviating, that. This is the subject I know best, this is what I studied and published papers on, this is what I have a masters, a doctorate and post-doctorate experience in. But that knowledge, and the means to action it, is on the highest of high shelves and currently I have no means of climbing up to get it down again.

So I try this drug and that drug and this diet and that one. I try exercising, I try relaxing, I try drinking and not drinking, going out and staying in. And yes, I’ve done CBT and dug deep into my soul to discover if I have a form of Victorian hysteria caused by masking my emotions and that actually I want to be ill and it’s all just a manifestation of me not being able to come to terms with some past trauma I can’t remember (seriously, this is almost all of what’s currently offered on the NHS). And so far nothing, not one thing in 9 years, has really worked, some things have helped, but I am not yet better and I don’t know if I will ever be that person who ran a half-marathon, cycled 14 miles a day, swam, did yoga, danced with abandon, was able to be in love.

I am almost unbelievably pissed off about this on a daily basis and trying to accept that the rest of my life may be spent feeling like a jet-lagged, hungover half-life with a cold is very, very hard to bear. I bear it, but fuck me, it’s very, very hard. I cry a lot, most days.

I get pleasure, truly great pleasure from so many things. Music, friends, art, a fine day, a rainy day, TV, radio, film, food, sex, reading, walking when I can, not doing anything when I have to, creating. You see me out and that smile is real, beautifully real, and you may not know that I am in pain and am keeping standing, or even sitting, with a huge amount of effort because I don’t want you to know it, I want to live that lie for a night. I don’t want to always answer “how are you doing?” with “I feel like a jet-lagged, hungover half-life with a cold.” I am not someone who actually wants to be ill.

I consider myself lucky, so many people with ME have a life confined to the bedroom and for those I weep. I am lucky to have a form of this medical condition that only confines me to the sofa some of the time, that only sees me lying on the floor in the loos at work or when out socialising some of the time, that only means I miss things I’ve bought tickets to occasionally. The last bit sounds like I’m complaining (I probably am) but I am also aware that I do more than most. I live my life to a high degree and am grumbling that I can’t sustain that but I do want it all. I want to go out when I can, make what I want, sing more and more, but above all else, I want to go back to being a scientist, I want to go back to being me. Fuck you ME, fuck you.

I did another story

The second round brief for the NYC Midnight flash fiction competition saw me get the brief: a sardine can, a flower shop, a ghost story. I came up with the idea fairly quickly then spent ages re-writing taking into account the feedback I got from my last story. Part of it was that I had to explain things more for the reader. I did so as I re-wrote, but now I worry I explained too much and lost some of my original voice. Here it is, you be the judge:

You Don’t Bring Me Flowers Any More

I moved the sardine can another fraction so they would open the door. I felt a great need to get out right now but I had to sit and wait until they noticed. They’d been so much panic at first but they finally figured out that things stopped moving as soon as the door was held open for a while. I couldn’t walk fast so the swift movement of the self-shutting door I had insisted on being installed because I wanted a near constant room temperature for our blooms to be at their best meant that I could only leave if the door was deliberately held open. Our returning clientele knew the wrath they would bring on themselves from Sarah if they dared do that for too long at any other time. Getting back in was never a problem, pulled, it seemed, by an invisible thread.

The sardine can had been placed on the counter by Sarah to remind Solomon to feed the cat his favourite treat. I thought the can was important to them both, that’s why I choose it. But it was not important to Solomon, who deliberately ignored it as masterfully as he deliberately ignored the cat. “How can she bear the smell in here of all places?” he thought whenever the sardines were brought in. He had tried once to feed the damn cat outside but got shrieked at by both animal and Sarah. Violent-coloured lilies were in at the moment and while some found them overpowering, he adored their harlot scent and relished the bright staining of his fingers from the stamens that needed to be delicately removed for fear the bride’s dress would be ‘ruined.’ Surely a reminder of the day, a drop of red wine, a smear of chocolate cake, a dirty hem from the night spent dancing and an orange splash from a deep pink tiger lily bouquet would be what they wanted preserved, not a dry-cleaned, boxed-up, well-stashed garment rarely to be seen again.

My gown still hung where I had had it taken off me in our bedroom. After the long, exhausting day the plan was passion or at least romance but Sarah had, in the end, had to tell me to stop moving as I drunkenly swayed, desperate to get out of the constriction of the now well worn-in wedding dress and to get into bed and to fall into sleep. Her dress was floaty and comfortable in comparison, both in opposition to what we were in real life, beyond the fantasy day that could have been over in 10 minutes if we’d chosen but, like so many before and after us, we went instead for a lavish event that cost time and money we didn’t have. If not the biggest ever wedding, it at least had the best ever floral decorations that all and sundry, from parents of the brides to the coy waiter, were encouraged, some later joked ‘forced,’ to take home by the arm-full.

I loved that Solomon loved the flowers as much as I had. I didn’t mind that he didn’t like the cat, he was an old bugger by now and not even supposed to have sardines but Sarah indulged him because he was still ours. I was glad Solomon was there and not some replacement for me, I just wish he would pay more attention to when I wanted to go outside. The vagaries of what I could channel the little force I had into meant I had to pick my target carefully. At first I tried moving the flowers but that went unnoticed by all but the cat. Knocking didn’t work either as the constant movement in the shop, always something to do, someone to help, always with music in the background, Alice Coltrane or some equally wonderful piece of abstract ethereal beauty, produced noise far greater than the mild drumming I could barely muster.

A customer came in so I moved the can again, but he was busy picking out his favourites. “Just for me today” he explained, “to treat myself after a very hard week.” He took his time, explaining his colour choices and needs in a detail I adored. I would happily have spent an hour with him getting the much-deserved bouquet together that for the next few days would remind him of his achievements. Or was it a reminder to carry on despite a failure? I would have got that out of him soon enough, but in a way that made him feel less probed and more counselled, all the time explaining that he needed to balance not only the colours but also the scents as they too would take up residence in his living room for a while.

Solomon carried on this tradition of listening and caring for our clientele, but it was still my shop, my initial was still one of two above the door. But ‘S & S’ was easily transposed from Sarah and Sylvia to Sarah and Solomon and the new customers just presumed that’s what it was. I noticed recently that he no longer corrected them and then I had to go outside so I could slowly soar up and away and scream and scream in the sky with the rest of them. And I needed to go away right now because weeping in the middle of the room I had designed and inhabited for so long, body and soul, felt wrong but I didn’t think I could bear to hold the tears in anymore. “We should maybe make it official,” Solomon said tentatively that morning after the last customer to enquire had left. “S & S,” he paused, “Sarah and Solomon.” And there had been a much longer pause from Sarah, of Sarah and Sylvia fame, and a look at the cat and a deep sigh and, for the first time ever, though it had been only 5 years, Sarah had answered quietly, “Yes, maybe it is now time.”

I did a story

Every year I enter the NYC Midnight short story competition. For this one, the flash fiction one to be 1000 words or less, I got the genre ‘Drama’, the location ‘A sweatshop’ and the thing ‘An automotive battery’. This is what I came up with.

The Blanket

We gathered under the blanket, as was our nightly ritual now. Under the blanket in the store room, the far store room, not the near one, the one that smelt of oil and salt, the one they only checked on the 28th day of every month. We knew what the months were now, what the days were, what the time was, at least for those minutes we could grab from the scheduled toilet break.

Before we knew only light and dark and I don’t know whether it was harder or easier to have every day like the last with no idea that time was passing. Before, I didn’t know how long I had been here. Since, I know we’ve been here, in the oily, salty far store room, briefly every day, for precisely three months. Before, thinking how long those three months were and using them to measure out before time, like the hands used to measure the cloth, I have estimated we’ve been here four years and I don’t know whether it is harder or easier to know that a third of my life has been spent where hands are used to measure cloth, distance not time. Not my hands, my hands are still growing, but under the blanket, those hands, my sister’s hands. Fully grown but still so small, but fully grown to be of a use, for a purpose, to measure out, chosen from a row to be the right tool for the job like I was chosen from a row to do mine, running and fetching, swift and accurate, from the near store room, from the far store room, so swift sometimes I got to stay precious seconds more and smell the salt and the oil and look and look and touch and touch beyond the requested item, round dark corners, under low shelves.

Five minutes of the world, clip on one side, clip on the other side, make sure the volume is low, so low, so we almost can’t hear and sometimes we know there is a world outside from the words that come out and sometimes, wonderful times, music comes out and I realise I don’t care about the words about the world outside because I know I won’t get to see it but the music outside makes my body sway and makes me want to throw off the blanket and laugh and dance but instead we sit and huddle and I tap out the rhythms on her hands in complex beats as she taps out a steady one on mine and I can feel her smiling and she can feel me smiling and as soon as the blanket comes off we must stop the face from showing but the smiling stays on inside.

Footsteps. Louder footsteps.

No no no no no no no.

It is the 15th day, it is not the 28th day, there should be no footsteps and what can we do that will stop the sound but not make a sound? Our hands untwine and we cannot say a word, she slowly feels for the volume knob but knows the shush ends with a click and will that be the click they hear so do we keep it on or can she shush enough just to end the sound without the click so I reach for the clip and a gentle soundless slap stops me and the footsteps keep coming and my hand goes to my mouth to stop me crying because I don’t care what they do to me I just care that they don’t take my five minutes of music and my five minutes of hands on hands.

No more footsteps.

Is that good or bad?

The light is off, there is no reason they should know we are in here, no reason why they should look in here, no reason, no reason, and if I say it again and again, in my head, inside my head only, always, all my thoughts have to be inside my head, then the footsteps have stopped because they were never there, we never heard them.

The door opens, a flick of the light switch but we know the light won’t go on because we have practiced, run, in, her down, reaching under the shelf, me on her back, light bulb taken out, her attaching cables to battery, click, click, cables to radio, click, click, me getting the blanket, we’re under, one minute gone. Five minutes outside then in reverse, blanket, unclip, hide the evidence, run back, one minute. Counting all the time the seconds of music, 300 seconds of another life, her constant rhythm she gives to my hand contrasting the ever-changing beats I give to hers.

Flick flick, flick flick.

Feet shuffle, muttered breath, the door closes, the footsteps recede but we know that this is the end, our movements swift through practice but we know that this is the end and the movements feel like treacle, like the oil of the far store room is coating our skin, the salt is seizing up our joints. We can’t rely on the 28th day, we can’t say for sure anymore so we can’t run, one minute setting up, five minutes of music, sun shining brightly under the dark blanket, cool air on our faces under the heavy cloth, running in a meadow, swimming in the stream as we crouch so close together, one minute running back and my face can’t hide, no smile to conceal, but wet, wet to wipe and I blame it on the dust and I blame it on the fumes and I blame it on the season and they don’t know what the season is but I do, we do, we know it’s the end of summer, the best summer we ever had.

To Bulgaria by Train: We are never, ever, ever going to get to Bulgaria by train

Pulling in to Belgrade on a sunny late afternoon, past a dirty, cramped, back-packer filled, graffitied  sleeper train. “Jeez, I wonder where those poor souls are going, thank fuck we’re not on that wreck.” Returning in the late evening from a brief tour of the tourist highlights, fort, crowded street, cobbled passengers, the now only train in the station is still waiting patiently, smugly, for us to board, “fuck you arseholes,” it hisses back as it heaves us on towards Sofia, “yeah, whatever, we’re only on you till 8:30am and we’ll mostly be asleep between now and then.”

A jolt, then a stop, a 3:30am realisation, despite sleeping pills and cider, that we’re not moving any more. Nor at 4:00am, 4:30am, but drift back knowing it’s okay, I’ve got a couple more hours until the 6:30am border wake up call.

Time has been expanded, lengthened by a faulty set of overhead cables. 10:30am and the border call is still to come but the endlessly flat, Grapevine mimiking scenery of the day before is replaced by steep mountains, green, green leaves, a river companion running alongside, cool tunnels, super rickety bridges, toasted by all with cold Fanta and freshly-brewed Turkish coffee bought from the guard. We no longer worry so much we may miss our connections.

Midday: Still in Serbia, nearly all our food is gone, the piles of dishes from vegan Zagreb split and ravished, emergency bars of gluten free worthiness shared with small bites. Nobody feeds the station dog today. Some hours ago we stopped again, an engine was taken off one end, an engine was put on the other end, the direction reversed. We now firmly believe we are never going to leave Serbia, we are never going to leave this train, all other reality is fiction, there was never anything but this train, there will never be anything but this train. Always, always we are told “the border is half an hour away.”

To Bulgaria by Train: Elvis granny and petty theft

It started with many different languages jostling for fewer seats. Defiant stares traded between those already sitting and those in possession of a ticket with the precious promised occupation. Explanations loud but wholly unintelligible by both sides. But with one spare ticket in our hand at least we didn’t have to turf out a small octogenarian, who went on to don silver Elvis shades as an accompaniment to her bright head scarf and blow us kisses as we sang. Later, with joy, a lady returned a turn to us in Italian while her angelic looking child ran and screamed the scream of the dammed down the aisle. Trading songs, none known mutually by the language but bonded by something deeper.

At the border, we all notice that the Serbian guard is beautiful. We shouldn’t notice these things, she should just be a person of authority, not marked by her looks but by her career, but she is so, so beautiful. And she is so, so angry, shouting at the cafe car man, we think, surely something like “I told you a million times not to let anyone here without their passport at the border, you are a stupid incompetent idiot and no doubt I will tell you tomorrow and the next day and the next week the same thing that I told you yesterday and the day before and last week” and she orders those without passports to go and get and she turns to accompany them and us with passports all gaze after her and ask if we should come too and she shouts a stern “sit” and we immediately obey. The beauty of her fellow border guard, a dark haired man, is mostly missed in his timidity and refusal to take a stance.

Then there was nothing going on, nothing and nothing and nothing, the journey now in middle age, all was quiet, a man somewhat worse for wear sat down without anybody noting it, a woman sat behind him without anybody noting it. Then 10 minutes of noise, the woman accused, spied through the seat, the man grumbling then shouting “sit down, sit down” as Bernard stood up, stood up. I stood up, shouting “why can’t he stand?!” I had no idea what was going on. Ground stood by Bernard, the man stood in defiance, shouted more, then the words became a shove and the shouting rolled down the train as the quiet sit behinder was revealed by accusation as a thief and shouts from all round and the guard came, wandered in, wandered past, wandered out. Drunk accomplice and petty thief wandered off the other way. Ineffectual guard had a few words but though the train was stopped and we chorused “throw him off,” a shrug was given, nothing else was said, everyone sat down.

To Bulgaria via Train: Wow, Zagreb, who knew?

Ladies and Gentleman, roll up, roll up, the six-headed monster is hitting Zagreb. Pulling here, pushing there, hurry up, slow down, turn this way, walk that way, where’s my foot, where’s my wing? But really, six strong-headed people wandering around a city they didn’t know was mostly great joy, a grey, rainy, hungry arrival turned sunny, bright and satiated once luggage was stowed, a cafe was found, food and drinks served.

Definite goals, two churches, a market, the surprisingly poignant Museum of Broken Relationships, all punctuated by meandering detours. Meeting times moved to suit a trek to a vegan cafe that served gluten free food so two heads were thrilled, six bellies were delighted though, enough for meat and wheat to be forgotten for a while. Stock up, up, up while I can, one inside, three to take away, I’ll eat again, but who knows where, who knows when.

Then time alone, essential quiet, a short bath turned into a long soak once jacuzzi jets were spied and tried and ooooo, that’s good, my aching back is in love, my sore muscles are soothed, restlessness of essential emails unanswered calmed by hours in which to thoughtfully do so. Naked trips to an open-doored loo, no wonder I normally live by myself, the small things mean so much.

To Bulgaria by train: Munich to Zagreb overnight

“It’s not safe to sit there” said the guard, but in turning away, not really caring. He pointed vaguely to the sign next to the step I was sitting on by the door somewhat precariously holding me away from the speeding ground outside couchette carriage 2.80, pulled by the night train from Munich to Zagreb. I continued munching on my precious breakfast bar, sipping from my life saving bottle of cold press coffee. “I will punch someone if I don’t eat food and drink caffeine as soon as I wake up” I’d warned my travelling companions the night before with only a half smile. They had promised to shove any handy edibles and suitable liquids into my face as soon as my eyes were open but I was the first to wake up, so I snuck off, trying not to be the annoying noisy one in the confined sleeping quarters, to sit on the step, looking out as the drizzly but beautifully green Croatian countryside said hello to me for the first time,”hello there Croatia” I said back.