It used to reside in open plan offices that smelled faintly of yesterday’s soup. It used to curl up on keyboards and yawn at powerpoint presentations that were doomed to be made-viewed-discarded-made-viewed-discarded. And, once a month, it used to slink onto my bank statement and preen.
The Point didn’t enjoy its unexpected uprooting. It disappeared for long months, presumably butting its head against the closed glass of sliding doors that no longer allowed entrance. It must have spent hours beneath familiar windows, now closed just too far to admit it. I’d hear grumbling yowls in the night, as it yearned for what was and bemoaned what is.
And then one day, it finally wended its way back to me, with ears chewed until scalloped and with pale moons of bare skin along its flank, an inverse leopard. We started out slow: careful sniffs at a paint palette and a cautious paw batting a runaway sponge. Staring matches with spider plants, pressing close to a warm oven door, curling into loving arms.
The water felt warm, a soft lulling comfort that whispered my eyes closed.
In the months that I’ve been here, floating under a gentle sun, I have drifted further and further from the shore I once walked.
The longer I lie here, the less I remember why I fled land for sea. There was something about pain, I think.
Soft waves sluice away thoughts before they can take shape.
This was a safe place to wait.
But there’s no longer a shoreline on my horizon.
Panic hears the skip of my heartbeat as a starter gun, and she charges toward me, eyeballs rolling in a rearing skull. Her hooves syncopate with heartbeats.
I’m waiting for a letter. It exists in potentia every morning I approach the letterbox, a Schrödinger’s envelope that only resolves itself as my key turns in the lock.
The letter will contain an appointment date, one that I can hang on my empty reels of calendar. It will let me pretend to myself that things will one day revert, the threads will once more be woven into a tightly held pattern of predictability.
In the meantime, the future unspools wildly and puddles at my feet, shapeless and purposeless.
Of course, my former self resented those tight wefts of work and travel. The endless predictability of the future chafed and bit, and left no thread free for a spontaneous embroidered trill.
Yet despite the benefits to my current state of uncertainty, I remain blind.
Society isn’t all that keen on people having unplanned futures, or unpredictable and potentially unstable paths. It likes individuals to snap into acceptable roles, populate and pay up. Faltering in no man’s land is a sign of weakness, laziness, fecklessness, or failure, so people self-flagellate until they implode or fit back in.
I circle myself in my mind and snap at my heels whenever I start enjoying myself. I can’t relax into this state in case I start liking it.
Instead, I remain vigilant and wait for a letter, listening for the click-clack of a loom re-started.
Happy New Year to everyone! It’s been too long since I last wrote a post – I’ve had a veritable cornucopia of minor illnesses along with the usual cramping beast so I’m not sure I’ve felt even vaguely healthy since October. Fingers crossed for a good start to 2020!
I’m currently in the south of Spain, where evenings remain lengthy and skies are adamantly blue. I’m somewhat amusingly on a ski holiday, which is possibly the worst activity imaginable given my various body issues, so I’m enjoying the views and the atmosphere whilst keeping my feet as firmly adhered to the ground as possible. It’s been bizarre to walk down a snowy mountain in a t-shirt at the start of January.
It’s my first holiday in a long while, mostly because I get ill when I travel, and then get anxious about being ill when I travel, and then get ill because I’m anxious… and repeat.
I did get crampy and did have to spend the first couple days in bed, but it’s a relief to have ventured forth despite the fear. It also brought up memories of the last time I’d been in these mountains, and the changes in my health and wider life. Last time was back in the ibuprofen days when I had travel anxiety but didn’t really think much about getting ill, turns out I still wasn’t carefree even when I really could have been!
I’m now thoroughly appreciative of good health days, of my many patient friends, and of the kindness of my family. And I wish all of you a full complement of the same.
Painkillers are saviours. With them, there’s a chance that things won’t escalate and I’ll get back to normal much sooner. With them, I’m less likely to do something stupid to make the pain go away. They’re an occasional safety net, a buffer that stops my brain from blowing its tolerance gauge.
But they also coat my brain in lethargy and sew my eyelids shut. They drain me of saliva and dangle me by the nape of my neck so my limbs hang heavy and helpless. My words come slow and cracked, and bruises bloom on my shins and shoulders.
*This is basically one long piece about vomiting, probably not a great accompaniment for food… (Unless that floats your boat).
Ah Cathay Pacific. Forever wedded to vomit in my mind. It was a very unhappy union.
I was on a long haul flight from China to London and had been cramping merrily for hours. Ibuprofen wasn’t making a dent, despite inadvisable dosages.
My main mistake was choosing to eat airplane food in a belated attempt to line my stomach.
My gorge rose with no warning. Gargantuan and whale like, it buckled my face in a wild bid for freedom. I attempted to keep all orifices closed but was scuppered by my nose, which released a high speed spray of tiny pasta bows – all over the business man next to me.
His suit was wrapped in a lap blanket (he’d clearly done something right in a former life), but he didn’t seem particularly comforted. He reached to prod me, caught sight of my bulging cheeks, and wisely opted to call the air hostess instead.
At this point, the flood gates opened.
A stream of hostesses approached me in masks and gloves with dozens of tiny Cathay Pacific wet wipes, the scent of which promptly launched another volley of vomit.
I assume they thought I was carrying some virulent disease that could land them all in quarantine, so I appreciate that they were willing to come close enough to drop the wet wipes off.
Interminable hours later, I arrived in London on wobbly legs and in a nose-hair dissolving cloud of scent (though I had been wearing a mustard and brown striped jumper, which turns out to be the best vomit camouflage gear you could ask for). I was left very much alone on the coach back to Oxford, free to concentrate on willing my stomach contents to stay put.
My parents picked me up (they were even willing to make physical contact, which is a sign of true love), and watched me with worried faces as I wove toward the car.
I arrived at the boot, and promptly booted over the back wheel – much to the shock of various tourists who clearly hadn’t spent much time in a university town before.
My parents, ever the heroes, actually let me inside the car rather than strapping me to the top, and got me back to safety and a shower at record speed.
I still find Cathay Pacific wet wipes lurking amongst my things. A small plasticky reminder of this proud occasion.
Don’t disclose they advised. I have no tidy disclosure to make, no Latinate phrase to impress or Wikipedia page to authenticate.
I am unfranked.
I have a messy mouthful of words that stutter their way into the world. A tendency to tail away.
No it isn’t great, yes it does affect my working patterns.
Don’t read their expressions, don’t downplay.
I’ve got two-pilled dexterity of mouth, should have taken one, but the fear of pain was worse than a clumsy tongue.
I’ve got weevilling cramps riddling my face, eating into my brow.
What did she just say?
How can we make this role work?
Focus on outputs not hours in the office, let me pick my brain when it’s ripe not rotten, trust me, respect me, realise that this is worse for me than for you.
I was carrying out the arcane and unusual hobby of pulling on my pants – knickers, not trousers – on Thursday, when one of my sacroiliac joints gave a forbidding clunk.
Possibly a(nother) sign from the Universe, this one telling me not to wear pants? (On previous occasions I’ve been putting on trousers, reaching for things, drying my feet, playing catch, or plugging something in, so I guess those are all out too.)
I’m now marooned on my mattress like an upturned turtle (or like a beached walrus as my mother flatteringly suggests). Walking is currently a spine-drenching shriek-inducing slow drag. My neighbours must be thinking I’m having quite the time of it, given the gasps, moans, swearing and thunks I’ve been making when trying to get to the loo. At least alternate reality me is enjoying herself.
Notes for Future Self
Keep the loo roll holder topped up (or else no loo paper for you).
Move all necessities to lower cupboards (but not too low). Or raise the entire floor of the flat. Or get taller.
Stock more painkiller packs by your bed, ditto emergency food for stomach lining. Don’t eat emergency food in non-emergencies, idiot.
Keep antiperspirant next to your bed. For the love of all the gods.
Those fan remotes you thought were stupid? Turns out, not so stupid. Dig those out.
Take the rubbish out whenever possible so it doesn’t fester for days when you can’t move. Adopt a zero tolerance policy for flies.
Rig charger cables to loop over the top of the bed so you don’t spend fifteen minutes wriggling millimetre by millimetre to reach them.
Keep instant edible things in the flat that aren’t just raw tomatoes and celery.
Get a bottom buddy. [NB. Not what it sounds like] [NB2. Not much better than what it sounds like].
The Pain Killer was born for the second time when his family died.
Or more accurately, after he had watched his wife, children, parents and siblings rot to pieces in front of him. Their screams had been just another sound in the hell that had become their village. One after another, no matter the water poured between cracked lips, the bandages placed over festering flesh. There was nothing he could do.
And when his oldest child finally passed, and he looked down upon himself and saw the rot beginning to spread across his tanned torso, he began to laugh. He wrapped his shaking form around the stinking remains of his loved ones and he gave himself away to the void.
The void had sent him back.
He now wore a thick grey fur cloak, a long way from the thin woven clothes his wife had made for him when he had lived before. A continent away, centuries past, but the loss burned fresh within his body.
He had spent weeks journeying to this town. As he approached, a familiar wailing rose from inside the walls. The snow on the road was splattered with red.
He could see the pain even from this distance, a dark miasma in a frenzy above the buildings. Meaningless slaughter had released the pain that had been held in those bodies, leaving it to dart and swirl until it found a target amongst the living.
Though pain could be generated by humanity, it could not easily be removed from the world. It might transform into grief, or physical pain, or mental anguish, it might linger for weeks or decades, moving from host to host. But it would not naturally dissipate.
The Pain Killer was one of the only ones left with the knowledge of how to ground pain. He had met others at major catastrophes, their interactions limited to professional nods of acknowledgement. But there seemed to be more and more pain erupting across the world, and fewer and fewer of them left to face it.
A light-haired young man had his hands pressed to the rough stone of the town wall. His head was bent, back heaving with deep retches interposed with sobs. Pain roiled around him, an impossible amount attempting to burrow its way in.
The Pain Killer kept his distance. He inhaled, and began to draw the filaments away from the bent figure, bracing himself against the lashing anguish. He channelled the darkness into the ground below, trapping the writhing mass in depths warmed by the Earth’s core. As he worked, the figure of the young man unbent, still burdened by grief but no longer maddened by it.
The Pain Killer eyed the young man. There were so many here that could be born into another life. Into this life. He could taste rage, grief, blood in the air. And there was more and more pain in the world, spreading from man to man like pestilence.
And yet even for the sake of the world, he would not have another be born again as he had been. He would not cause another to ‘live’ as he lived.
I emerge from my chrysalis. It’s daylight and the sheets have transformed into a hitherto undiscovered substance during my time inside them.
The chrysalis stage involves me, the floor, and the bathroom. I usually stop bothering to eat solids after a while so I can promote myself to vomiting in the sink instead of the toilet (pro-tip). Plus it’s hard to appreciate the colour of bile in a loo.
The final chitterings of cramp have quieted down, prompting the cracking of the sheet walls. A twitched curtain gives a blinding indication that the weather (rather selfishly) has stopped providing an excuse for extended pupation.
My butterfly transformation equates to having a shower, my hair no longer being scraped into a grease-sheened lopsided lump, and my skin making First Contact with Not Pyjamas.
It turns out my nine-ish days of sleep-vom-don’t-bother-rinsing-repeat has led me to forget how temperature relates to my wardrobe (I’ve been meaning to make a Dummies Guide to the coats I own and the temperature bands they function in). Still, I understand that a healthy glow is desirable?
In the words of Pratchett, I am glowing like a pig.
I find myself faintly surprised that the outside world actually looks familiar. It feels like the rest of the world should surely have undergone some sort of metamorphosis as well, but there’s the same old pavement with the same old malformed Lucozade bottle and faded ruin of a Quavers packet.
Home, sweet home.
Life outside my chrysalis scrapes the ears and eyes, but also contains delights such as non-frozen or tinned foodstuffs, and other people – some of whom I actually like. (I might not be deemed the most social of butterflies).
There are queues to stand in, the Tube to be delayed on, inconvenient misunderstandings to have with pharmacies, piles of ignored messages to respond to, and those oh-so-delightfully crunchy sheets to wash.
Today is a good day. It might not be long before my butterfly self catches alight but, on the plus side, a caterpillar always crawls from the ashes.
I, sixteen, and you sixteen in a pack – so strong, so reliable. You seemed so available back then.
I couldn’t get enough of you. Ignored the murmurs from my family, my friends.
I needed you.
But your sugar coating was skin deep.
You turned my bowels into burning pipes of doom.
O! The diarrhoea!
The tender eruptions of our love!
My stomach filled with the broken shards of our promises, and inflated till it tried to escape my chest. Vomit stained my nights.
My stomach in my mouth, I had to let you go.
Many years have grown between us now. I watch others flirt with you and bite back warnings. They will learn.
He sleeps now, my Morpheus, he doesn’t know I once loved another. He is a gentle tonic after your burning love, for all that he is slow to respond when I call him.
You, oh, you were my first love.
I wonder sometimes, if I were to meet you again, would we be as once we were?
Sweet sixteen and the pain of the world washed away.
In which we discuss MUPS (which isn’t a puppy with a suspiciously lumpy neck)
There’s a basement under the Great Hall of Diagnosis. It’s never talked about and the basement door can only be reached by traversing the myriad doors and corridors of the upper floors, with their neat, rectangular, printed labels (Erythromelalgia – Gonorrhea – Vitiligo – Yellow Fever – Ichthyosis).
The label on the basement door is handwritten with an attempt to look authoritative – right up until the writer realised they were running out of space and the letters began to get smaller and smaller:
‘Medically Unexplained Physical Symptoms (MUPS)’
Underneath, on a scrappier piece of paper, someone else has scrawled in blobby biro,
‘Welcome to the X-Files’
The basement’s occupants are numerous and varied. Every time medical testing fails to allocate a condition to one of the more reputable rooms above, it gets dumped in the basement.
The patient, meanwhile, receives the good/bad news that there isn’t a diagnosis. On the one hand, you’re not dying more quickly than you ought to be, as far as medical science can tell. On the other hand, we can’t find a reason for those physical symptoms, so we can’t treat them.
The unfortunate subtext is that there isn’t a real reason for the symptoms. There’s a sneaking suggestion that the cause of the symptoms is something psychological rather than physical, of the mind rather than the body.
The mind is a product of the body, of course, and undoubtedly can induce and influence the body’s behaviour. And yet it seems curious that this is the only explanation given weight. There is rarely any mention of the possibility that medical science might develop and learn more, and eventually figure out that there is a determinable cause for some of these conditions.
Conditions like Fibromyalgia and Chronic Fatigue are finally making the journey from the MUPS basement to newly decorated rooms with printed labels on the floors above. Evidence has been found and explanations have been developed following extensive research. Medicine is acknowledging that there is something real to find out about, and is finally validating the experience of all those people who were told it was in their minds.
On two occasions, I’ve been the patient listening to a consultant say they can’t find anything wrong. On both occasions, I nod, and silence falls. I wait for a suggestion of a next step, a new test or another referral, but their benign smiles remain impossibly fixed. I begin to feel flutters of frantic panic, a desperation for something, anything to hold on to, a gasp of hope. They give me nothing.
I wonder if they’re waiting for me to say the words for them, ‘There’s nothing we can do,’ and see myself out. I eventually received a ‘Good luck’ from one of them, but it tasted bitter in its emptiness.
Being designated to the MUPS basement leaves you unlabelled, open to the slow erosion of society’s slurs for those who lack a medically approved stamp: lazy, attention seeking, hysterical, weak, a drain on resources.
I have things a good deal easier than a lot of people. I don’t have continual, endless pain, I don’t have a permanent physical disability, and my brain more or less manages its chemical levels without too much intervention.
Some of the time, I’m okay. I can function, push through a bit of fatigue and get on with things.
But then I get a timely reminder: Mister Hyde is never far from the surface.
He emerges when I’m sitting in a meeting and twisted to the side, or I’ve been for a walk, or I’ve been sitting in a car or bus, or I’ve done something physical, or become stressed or excited or upset, or on a few occasions, he’s emerged when I’ve been sleeping – which is possibly his idea of humour.
Hyde arrives with an insidious cramping that creeps up and down my right side – from the muscles in my right butt cheek, all the way up my back, through my shoulder and pec, up my neck, and across the right side of my face.
He lingers and worms and burrows, pulling on nerves until the nausea builds and the pain ramps up. He’ll occasionally abate for a bit after I vomit, always the gentleman, but slithers back after a considerate pause. Ever the tease, he sometimes crawls along my muscles to chew at my calf, a potential precursor to him buggering off.
He usually rips his way back up.
Mister Hyde tends to stick around for two or three or four days, with little rhyme or reason to his presence. He’ll shut up a bit if I manage to chug painkillers in time and keep them down, but I can feel him lingering underneath, waiting for my bloodstream to empty. I lie on the floor (hard surfaces are easier to dig your muscles against), curtains drawn, waiting for him to leave me alone.
Mister Hyde is an absolute bastard.
He arrived when I was about thirteen, a curiously literal pain in the butt that would cause me to dig my rear against seat belt holders and the corners of cupboards. He grew as I did, spreading until now he sometimes flirts with the left side of my body, cramping a shoulder muscle or digging into my neck. A reminder that there is a whole lot of unconquered territory left, and that things could be a whole lot worse.
Medically Unexplained 