Category / Medical conditions

by Isla

Miracles

In which I consider the nature of hope

This is the gap filled by gods.

Or if not gods, then magic.

Or if not magic, then convincingly futuristic sounding “medicine”.

Or if not futuristic medicine, then convincingly ancient sounding “medicine”.

This is the gap that bleeds hope.

It exists in our minds alone. The world gives little care for concepts like ‘unfairness’ or ‘undeserving’.

The world just is. And sometimes we cannot trace our patterns of meaning over its contours.

The gap is vulnerable. It wants to be filled. Like a child it reaches for anything that comes into its vicinity.

And there are always those with a shark’s sense for blood.

They will circle when hope cries out, carefully brewed oil of snake or poisoned apple in hand. They wear a mask of utmost sympathy, and speak with the zeal of one with absolute fact at their back.

And what can hope do but reach for a taste?

Charms, crystals, prayers, herbs, mysterious energy reading machines – just a little more, just a little longer, one more day-month-year. The cure lies just around the corner.

‘Lies’ being the operative word.

The gap hungers, whimpers, so tired of the ache of hoping yet never quite fulfilling.

Yet if we let gods, magic, mysticism, or alternative medicines pass us by, what balm can soothe the gap?

I fill my gap with my own absolute insignificance.

With the scale of this planet, the solar system, the galaxy, the universe. With the incredible statistical feat of my existence. With the duration of my life against the age of the Sun. With the breathtaking beauty of a world that will continue to rotate uncaring and unaware of the motes that scatter its surface.

It is here that I find comfort. Meaning in the absolute meaningless of space. For all that humanity builds or destroys, our wars, our discoveries, our loves and joys, those we laud or despise, we are but a blink. Everything we know and discover is incredible, and yet utterly insignificant against all that we do not know.

My gap overflows. 

And though this may not find cures or solutions, there is a peace that comes with perspective. Yes, I am insignificant. But how wonderful it is to have the capacity to think that thought. 

How lucky I am to have my blink of existence.

by Isla

Iceberg

In which I had to go out

Chalk sketch of a lion by Isla Kennedy - Medically Unexplained

I went to choir on Thursday.*

* Actual process:

1. Wake up and scan through body. 

Is there cramping? [Y/N]

Will this cramping escalate and prevent you from going? [Y/N]

If “Y”, message choir director. Experience extreme guilt. Skip to step 9.

If “N”, eat, then take painkillers. 

2. Are you still cramping or has cramping started since this morning? [Y/N]

Will you have to take (more) painkillers? [Y/N]

If “Y”, half an hour before taking them, eat to line stomach in order to avoid gastritis.

3. Are you still cramping? [Y/N]

If “Y”, eat, take painkillers around an hour before getting on the bus.

4. Make sure you bring a vomit bag, tissues, water, more painkillers. 

5. Select the bus seat least likely to induce cramp of the ones available. Do not get on the bus if there is no seat. 

Sit bolt upright and as still as you can. 

Simultaneously attempt to spread out and wedge yourself securely.

Manspread without upsetting the person next to you.

Try to relax.

6. While in choir, hydrate, relax, and roll shoulders.

Sing.

7. Are you still cramping? [Y/N]

If “Y”, during the mid-practice break take more painkillers. 

8. Is the cramp getting worse? [Y/N]

If “Y”, get off the bus early and walk the rest of the way home. 

9. Is the cramp still bad? [Y/N]

If “Y”, move pillows and duvet to the floor.

Eat to line stomach.

Take painkillers.

Apply ibuprofen gel.

Apply ice packs.

Move plastic bin within arm’s reach.

10. Leave food and water on the floor nearby in case you need to take more painkillers in four hours’ time. 

11. Attempt to sleep on the floor. 

12. If cramping escalates, wake in four hours, eat, take painkillers. 

13. Apply hope protocol.

by Isla

Self-storage

In which we step behind the doors

Photo of a modelling clay animal sleeping by Isla Kennedy - Medically Unexplained

*Just in case this comes across as a bit concerning, I’m okay! I wanted to explore the concepts below as speculative fiction, please note that there are potential triggers around suicide.

People come here to die. 

When you’re unwanted, or too old, too helpless, too ill. When you feel like you’re a millstone around your family’s neck, when your mind begins to go and you don’t want your children to see your emptying shell, when you can’t bear to watch your parents try to smile as your body wastes, when you’ve bankrupted your family and can’t look in your wife’s eyes, when you’re too lonely and can’t stand the quiet for one more day. When you cannot try any longer.

This is where you come. 

You press your hand to a digitised waiver. You walk down row upon row of brightly painted doors until you come to your assigned number.

The door opens at the touch of your palm to the plate, the lights flick on automatically. There’s a long chair in the middle, one that reclines all the way back with adjustable everything. There are monitor patches to stick on all over, so you have to strip off and slip one of their gowns over your head. There’s a box for your clothing and anything else you brought with you. 

Most people have nothing else to put in it.

Next to the chair is a dark grey VR helmet, padded and ventilated through gills at the side. Cords run from the helmet to the wall, snaking away into the unknown. You sit and lean backward until you’re nearly horizontal. The helmet slips over your face and –

There are hundreds of these places all over the country. Whoever designs them always seems to choose primary colours for the doors. Maybe they think that’s more cheerful than beige.

Once a client has settled into their room and become fully immersed in their chosen virtual reality simulation, a team of begloved carers inserts catheters and feeding tubes and hooks up the monitors. That’s the way things stay until the client checks out. Terminally. 

It’s meant to be a good way to go. You get to live in a virtual world that’s designed to avoid stressors and sources of misery, and they make it as gentle and pain-free as possible. 

There have always been stories, of course. The one about the self-storage unit that got raided and they found nothing but empty beds and a whole lot of organ transport boxes.

Or the one where they didn’t bother with any of the body maintenance so emaciated people were dying in a lake of their own piss and faeces.

Or the one where they set up a side business and let people in to do whatever they wanted with the bodies while the minds were hooked up to the VR. 

I guess there’s always some sicko looking to make an extra buck. 

The thing is, even the units that operate under the law have a major snag. That waiver you sign says you’re not allowed to change your mind: you’re never allowed to check out or be checked out.

I wonder how many people this no takesie-backsies rule has left trapped inside.

The state likes self-storage though. Way cheaper to run than care homes or state facilities, easier to deliver medical assistance, and the state gets to claim any assets to pay for care. They’re trialling it ‘voluntarily’ in prisons, so offenders get to feel like they’re free, and prison staff no longer have to deal with violence or drug abuse. 

There are more and more self-storage facilities springing up. Squat towers with corridors that wind around and around, each lined with an orderly array of doors.

Behind those primary coloured doors, a hundred minds spin away.

by Isla

Pills

In which I experience a difference of opinion

Pencil sketch of a Chinese lion by Isla Kennedy - Medically Unexplained

‘I never take pills,’ she says, with a look of constipated pain at the very thought.

We were in the bomb shelter of the GP, walls so plastered in paper notices that it’s beginning to look like a serial killer den.

She chose the seat next to me – ignoring the holy rule that thou shalt always attempt to leave a gap between you and any other occupant (a rule obeyed throughout the land in public toilets and transport services).

She also ignored my headphones and the ‘Vacant’ sign I keep plastered across my forehead when I venture out into the world.

It wasn’t entirely clear why she thought it was a good idea to advocate against pills to someone seeking medical assistance, who would surely statistically be more likely to be taking pills than your average person. Loneliness? Evangelical calling? Verbal diarrhoea?

My non-committal ‘hm’ has no effect.

‘I like to only put natural things in my system, you know what they say -‘ cue gurgling laugh, ‘- you’ve got to treat your body like a temple!’

I feel marginally affronted. I do treat my body like a temple. It’s just one of those temples with giant plates of milk on the floor surrounded by hordes and hordes of rats. Or one of those abandoned ones that’s all dusty statues, cracked floors, and inadvisable man traps.

Oh, and pills. Lots and lots of pills.

I tune back in.

‘… And I get this fantastic health tonic from that Chinese acupuncture place by the station, you know the one?’

I do know the one. It has a real focus in its window displays on curing male genital droop. 

‘It tastes foul of course,’ she continues, ‘but it’s just fantastic for skin!’ 

She runs eager eyes over my face in the hope of finding a skin condition at which to advertise. It’s one of the few times I’m cheerful about the ‘invisible’ part of invisible illness. She bucks back up, undaunted.

‘And it’s all natural of course. No pills. And you know, the Chinese are very smart and wise.’

Ah the sweet, sweet taste of reductionist racism. I find it amusing that traditional Chinese medicine practitioners in China are busy turning liquid medicine into nice white pills in order to increase their reputability. Here, the more eye of newt people can see staring back at them, the better.

‘And I just think that people really shouldn’t take so many! It can’t be good for the body, you know?’

At this point, my tolerance gauge blows a gasket. 

I finally turn to look at her and weigh my words.

You don’t take pills because you are well. I’m really pleased for you. That’s really lucky.

People who are not well sometimes have to take pills. Pills can help them manage their illness.

Pills do not generally cause their illness in the first place. Sometimes they have side effects, but these have to be measured against the impact of the illness.

I open my mouth to speak –

– Her name gets called.

‘It’s just ridiculous how long it takes to get a Pill check here, isn’t it?!’ She scoops up a pale pink bag and heads down the corridor.

When she walks past five minutes later, she wags a prescription slip in my direction as a goodbye.

Exit, pursued by a scowl.

by Isla

S.H.A.M.E

In which we journey to a future far, far (and hopefully further) away

Pencil sketch of a cat by Isla Kennedy, Medically Unexplained

They brought in S.H.A.M.E four years ago.

It stands for System for Health and Monitoring Efficiency, and it took the government years of bullying, bribes and blackmail to force companies into implementation. It was going to ‘transform productivity’, ‘improve stakeholder engagement’, and had to be ‘actioned immediately’.

Workers are pretty damn engaged. But mostly because they’re scared shitless.

It works like this: sickness and absence stats, start and finish times, and hours spent on productive tasks are all monitored by a national system that ties data to your National Insurance number and Health Service number. Everyone – from the CEO to the handyman – has to wear a digitised display badge with stats and rankings, and it emits an ear-piercing bleep every time your numbers slip. Teams get rewarded or punished based on collective performances. Productivity is the only thing that matters.

Once your stats drop too low, you can’t work for a company in the same tier any more – you have to move down to a lower tier company. Less pay, same badges. The sleep at the factory kind of deal with no-break shifts, no daylight, and no real money.

If your stats slip too far, there are no jobs. No one can take on a dud in case they have to fork out for rehabilitation training. S.H.A.M.E Central Services take the offender somewhere for a few weeks and drill into them that they need to be less shit. Then they get their badge numbers bumped up just enough so they can work in the lowest tier. “Rehabilitation” costs way more than most people can afford, and more than most companies want to pay.

No badge means no money and no health services.

The government says that measures are in place for S.H.A.M.E to work for everyone. It says that those with a confirmed diagnosis receive an allotment of extra points on their badge. It says that you can get a badge with larger font displays. Or with digi-braille. It says that anyone who’s fallen out the bottom has chosen to ‘not be part of a successful system’.

The government says a lot of things.

They’re launching S.H.A.M.E in America now, and half of Europe is a S.H.A.M.E zone. Apparently the UK’s been an astounding success case.

It’s like they can’t even see all those people sleeping on the streets.

by Isla

And so it goes

In which I venture forth

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.

by Isla

Ode to Ibuprofen

In which I dwell on a love lost

Pencil and watercolour sketch of a snake eating frogspawn by Isla Kennedy - Medically Unexplained

I was young when I met you.

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.

But my digestive system belies my heart.

My guts have never forgiven you.

by Isla

While you were sleeping

In which we step, momentarily, into another world

The sphere market is a strange place (though perhaps not as strange as its purveyor).

Tiered shelves are ranked against the walls, blocked from wandering fingers by a coarse weave wire mesh.

The spheres on those shelves hum softly to one another, together creating the prickling feeling that I am entering a hive.

I nod to the slumped figure in the far corner, he/she is so immobile that my eyes had slid over them before realising what they had seen. The figure grunts, still without moving.

I return my gaze to the spheres. They are marvellous feats of engineering. Around a century ago, two enterprising researchers discovered that they could link small engines to individual humans, harnessing energy while they slept. These generators could be linked into systems and used as a reliable and strong power source – if you could afford one. Even the cheapest (those that were twinned with the arguably-humans that require only four hours sleep a night) cost more than half a year’s earnings.

On a rickety, splintered wooden tray next to the purveyor are the broken spheres and the unpredictable. One has rolled into the corner and repeatedly flashes on and then off – narcolepsy perhaps, or a new parent. Another seems to be humming happily enough, but the stallholder jerks and mutters ‘sinus issues’, I nod, it’s not likely to have a reliable burn time.

The most precious spheres are kept in a smeared glass case in the centre of the room – the pride and glory. They glow in harmony, guaranteed to provide at least ten productive hours a night, and often last much longer than that. The humans they link to suffer from constant fatigue, some due to depression, others due to physical health disorders. In order to be considered the best possible supply, these humans must have been reliably over-sleeping for at least a year under testing.

One sphere sits on a dusty velvet plinth, emblazoned with ‘commar pashunt‘. It’s been there a while, judging by the cobwebs that twine with the filigree of its sphere.

I’ve heard the whispers that the engineers have been pushed harder and harder by demand. That they have been seeding the humans with disease to increase the worth of spheres, and interfering with efforts to research cures. They live in fear that humanity might get its act together before the engineers can figure out how to stop spheres from becoming obsolete.

I suspect that’s giving humans too much credit.

The stallholder shifts, impatience clear in the lines of his/her body. I return to the sinus sphere and slide my fingers around the warm wire cage with its vibrating hum.

After all, sinusitis hardly ever gets better.

by Isla

The MUPS-Files

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’d like to get out of the basement one day.

by Isla

Hello Hyde

In which we meet a mysterious stranger

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.