Pain clinic

In which I’m not very funny

Last week I went along to a pain clinic appointment.

Middle-aged, male doctor, blunt opener:

‘I’m going to be honest with you. I don’t know why you’re here.’

Not the most auspicious start.

The barrage of honesty continued. I had the wrong type of pain (he only does localised pain – one joint, for preference), and I was still under investigation so shouldn’t have been sent to him.

He’d mis-read my notes and wasn’t all that happy when I pointed out the mix up (‘I don’t make things up. I don’t lie.’) I upped the amount of solicitousness in my tone and added a hefty sprinkle of ‘I’m so sorry’, and ‘of course’.

I queried whether he had any advice on painkillers, and he assumed I was trying to scalp him for opiates:

‘You shouldn’t be taking opiates. I don’t want to see another drug-addled patient walking through my door.’

Pause.

I made an attempt to explain that opiates were all I’ve got, given that we don’t have a way to treat the muscle behaviour because we don’t know what’s going on.

‘My best advice is don’t lose your job. And don’t take opiates.’

Pause.

‘You’re well educated? You google everything? Know things better than your consultants?’

He’d nailed that one – I’m an inveterate googler, but I’m also wise enough to go into medical appointments with an open mind. It was rapidly closing in this particular appointment.

‘You could join a Pain Management Programme. There’s one here, but we don’t have a psychologist and you need a good psychologist, that’s what you really need.’

It was around this point that I crumpled into tears, thereby annoyingly underlining his point.

The nurse was sent for some hand towels (I foolishly seem to see consultants without tissues to hand), and the tone rapidly shifted from ‘honesty’ to ‘I really wish I could do something for you.’

He described me as ‘delightful’ and ‘distressed’ in his letter to my GP. I feel like I stepped into another century.

Dead end.

Cloven

In which an unexpected cut gets made

Last night, my left hand cleaved myself in two.

The division was pleasingly symmetric, although it got a bit wonky along the spine (it’s not all that easy to do with a kitchen knife).

My left side had finally had enough of being the silent partner, the good one, the better half, always held back by its troublesome twin. All those shows it had to miss, the dinners it didn’t get to eat, and the sleep it could never recover.

My right side is the problem child. It throws tantrums until the whole body has to vomit, and it ruins everything. It gets all the attention: ‘Are you sitting comfortably? Do you need anything else? Shall I get you some ice?’

My left side just watched all the while.

I’m not sure what pushed it over the edge. Maybe the conversation I had with the doctor about having to wait even longer for another referral. Maybe the paddy my right side pulled that meant I missed Hamilton (left side really likes musicals).

It’s free now in any case. A bit wobbly on its newborn single sole, and with half a tongue poking through half a jaw of teeth whenever its hand tries to do anything fiddly. But it’ll get there.

No longer hidden backstage, my left side finally has the spotlight.

Out of my shell

In which I find a new home

I crawled into my first shell in childhood, a tiny whorl of cream that settled a comforting weight around my shoulders.

Likes reading, more slapdash than her brother, bit of a temper, proud, lies really well, perfectionist.

I outgrew that first shell in my teenage years and found myself a larger one, a cone splattered with brown.

Thoughtful, doesn’t like getting things wrong, good at big picture stuff, hates trying new things unless she knows she’ll be good at them. Good with other people but doesn’t always have the confidence to speak up. 

When I headed to university, I moved into a long pale spiral that gleamed inside.

Works well with others but needs her own space, will step up to lead if given a shove. Picks things up quickly, sees too many sides to successfully argue just one angle.

And so I moved as I changed, finding new homes whenever I outgrew the last.

I’ve been in my current shell for the last few years. It’s a gorgeous mottled green, fading to yellow at the tip. It fitted well, holding all that I am, all that I enjoy, and all that I was capable of. 

But now it hangs loose about me.

The person who chose this home saw the world differently, had different expectations, and had assumptions that can no longer come to pass. 

It is time to choose another shell.

There is a sadness in leaving one behind: I’m losing the familiar and the loyal, and moving into the unknown. But with change comes potential and possibility.

This new shell will contain my new self as it moves along a perpendicular path. It will be a shelter to life’s tides, a safe place to regroup and regrow. 

And one day it will feel like home.

Bad bet

In which I’m really appreciative

It’s a lot to sign up for: 

The cancelled dates, 

The midnight wakes,

The fact that there’s nothing to do but wait.

There’s the job I left, 

The dances I missed, 

Those times excuses were forced from your lips. 

There’s the rattle of medication,

The waiting lists marching in endless succession,

And the journeys made in a single direction.

It’s all in the knowledge that there is no, ‘and then’.

There is only this. 

You signed up without pause,

So for you, I’ll add the small print:

You’re signed up until ‘a lot’ is too much.

Sloshing organs

In which I navel gaze

In this bag of sloshing organs, something is awry.

It snuck in one night, to creep through shadowed muscle.

Pain shudders from every pad,

While fairytale sleep wends around its tail. 

It curls around my cheekbone,

Burrows into my back,

Nestles against my hip,

And savages my body.

It is a shy beast, this creature, eluding test and scan.

Trace undetectable.

Aside from the outline burned into my life.

Every action considered:

Every seat snagged, sleep grabbed, bus taken, Tube ridden,

Food eaten, song sung, every stress, cry, laugh, love – 

In this bag of sloshing organs, something is awry.

Unfranked

In which I contemplate interviews

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 get home. Safe. Floor. 

I find it hard to trust me anymore.

Why should they?

Time waits

In which I receive a call.

Come home, she says, a repeated plea.

Home.

There’s so much love there. Two people who will literally sandwich me when I’m howling and bathed in eau du vomit. They will hold me fast against the strange forces that wreck my body. They will feed me, comfort me, walk for me, and help me scrape the bottom of the barrel for sticky dregs of laughter.

Home.

Time stops there. Away from the life I have built for myself, the people I have collected, the places I call my own. There live the ones who knew me first, from knee high upward. There are the ones who taught me, inspired me, keep me in their hearts even now. It is there that childhood memories are unpacked.

Home brings summer flowers and cool rooms, new grown frogs and an old purring lap blanket. 

And yet a part of me asks, what then? 

Is this forever? 

Am I letting go of this life I’ve been building and falling a decade backward? Acceding to whatever it is that tears at my body?

Perhaps home must be given new lines to speak. I must dust it off, wipe away the sepia and see it in the light of the present. 

Safe harbour in the midst of this ship-wrecking storm.

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.

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.

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.

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.