The Darkness Returns

In the emergency dental clinic the air con is on sub-arctic high.  Patients clutch coats to their throats.  Those with phones, which is almost everyone, sit bent into their tiny screens.   The bloke next to me is in deep conversation with his solicitor.  “Tell her no, I’m not paying anything extra”. The wall-mounted patient’s television set to channels the staff prefer shows a programme about house buying in Andalusia.  A blonde couple are rejecting the polished marble floor of a magnificent and sun-filled villa as being not what they were expecting.  “If I were here I’d have pale wood and scattered rugs,” says the blonde woman through red lips half obscured by cascading blonde hair.  Her blue-eyed vacant looking blonde husband nods his blonde head.

My name is called, pretty quickly I thought,  and I’m ushered into a side clinic.  Here I am introduced to the three students on call today.   They spend half an hour taking my medical history during which I list prednisolone as something I once took but now, facing a wonderful side-effectless future, don’t.   The chair is reclined and they commence the examination.  Somehow the lamp won’t turn on and then no one can find any dental instruments.  The student dental nurse watches with interest.  She can’t find any instruments either.  The eventual diagnosis is that my heavily crowned upper teeth have worn the enamel from their lower brothers.  The underlying dentine has become revealed and is allowing access to the nerve-filled pulp below.  Pain when I eat.  Pain when I breathe.  The easy fix is a layer of laminate.  Won’t take long.  But they can’t find the mixture.  Then can’t find any instruments with which to apply it.  Drawers are opened.  And closed.  One of the group is sent off to consult with their qualified supervisor.  There is a discussion, door opening, cupboard hunting and finally the sound of a packet being opened and something being mixed.

I slumber, drop within myself, stretched out as I am in the sort of position I imagine astronauts would use when setting off for Mars.  Deep in my lower back, down where the synovial cyst slumbers I sense something shift.  A vague glimmer of pain.  A portent.  I ignore.  I shouldn’t.

The following day the whole raft of symptoms I’d forgotten through these many PMR-free months return.  Proximate muscles are stiff.  There are aches in my hips, my thighs.  It’s hard, almost impossible, to bend down.  And if I do get down then it’s equally as impossible to get back up.  This is a polymyalgia relapse.  A spike.  A regression.  A return. 

After a few days of failing to recognise what is actually happening I eventually hunt out my supply of unused prednisolone.  This is stored in a shoe box,  unused packets unreturned to the pharmacy and thank god for that.  I take 5 mg and then several hours later try another  5.  Before bed I swallow another.  Or do I?  I’m suddenly not sure how many I have taken.  Fear of polymyalgia fog.  I call the rheumatology help-line where a recorded voice tells me that they’ll return my call between 1.00 and 5.00 pm.  Today.  They do.

In discussion with the nurse who certainly puts the time in talking to me we eliminate the cyst acting up and settle for PMR as the lightly cause.  Relapse is common.  I take 15 mg pred in one swallow.  I’ll be called in for a consultation.  Don’t worry.  Try not to.  Ah prednisolone, the wonder drug, would I be worried about you?  My faithful, mind churning, twisted friend. 

In front of me stretch months of pharmacy calls, pill swallowing, tests, waiting rooms, consultations, discussions, hunting of the internet for answers, fumbling with the Heath hospital car park pay machines, careful record keeping, nose bleeds, wretchedness, infections, weight gain,   weirdness and worry studded sleep. 

In the lounge  stretch out on the sofa and stare a bit at the wall.  Then I turn on the TV.  On the screen they are describing a Spanish villa’s open-plan living area.  The polished marble is a strong selling point.  Apparently.  I change channels and get a day-time rerun of some DIY programme where builders rush to fix a disadvantaged person’s accommodation in time for their  birthday.  They are installing a pale wood floor.  It’ll have rugs scattered over it, the smiley-voiced presenter assures us.  The world is full of circles.

    

Eight Weeks In

It’s been that long since prednisolone crossed my lips.  In general terms nothing but for me some sort of eternity.  Would the shoulder freezes return?  Would I need to get up and shamble round the room again just to stop the leg from aching?  Could I walk into town without the requirement for stopping, leaning against walls or sitting in gutters?  Could I cope with a visit to B&Q, alone?  Make it round past the shelves of screws, racks of wood and lines of lamps, boilers and paint without feeling the irresistible pull of the car where I could sit and let the pain drain into the floor?  They wouldn’t.  I wouldn’t.  And I could.  In fact I did.  Ikea without pain.  Homebase with ease.  Here to Penarth Head and back without stopping.  All experiences for the Polymyalgic to relish.

In between times I’ve upped the writing.  Prose is so slow.  Unlike poetry which zips.  I research afternoons.  Read in the evening.  And, in this new and ideal world, write in the morning.  The secret is to get up and somehow slide to the desk without speaking to anyone about anything, not hearing any radio, or neighbourhood chatter, or happy gardeners running their power mowers in stripes.  It is vital to do all this hearing no irritating drills, builders shouty conversation, nor disc cutters from the permanently being rebuilt next door patio.  They finish it then turn round and build it again.  Permanent renovation.  So it seems.  

But, of course, the world is not ideal, nothing like,  so we have to compromise.  Mine is to rise, walk round the block (well, a few blocks) and the then, ignoring the world’s distractions as much as I can, put the right music on the player, down a hot tea,  and blow.  What music?  Scratchy bluegrass, The Bristol country sessions, Apache era Shadows, Booker T, early Dylan, Georgia Ruth, sweet soul music.   Does it work?  Mostly.

There is a post-prednisolone difficulty, however.  The eczema has returned.  There are patches on the ankles and the shins and in the lower back.  Flakes and crusts.  I’ve delved in the depth of cupboards and dug out the creams I once had prescribed.  What remains of them.  Apply liberally.  Scratch only with the soft bristles of a hairbrush.

A decade or more back UHW tested me for allergies.  I sat in the clinic while a whole grid of irritants was applied to my back and labelled in permanent marker.  The following day they called me back in to check which had reacted.  There’s only one red spot, the consultant told me.  He was a man in his early sixties wearing a baggy suit and with a spatula in his top packet.  Printers ink. 

Perfect.  For someone who’d been involved in print one way or another all his life what else could it be?  For forty years I’d been a writer, editor,  publisher, distributor, critic, bookseller and was now a sort of literary agent.  All that time touching paper with ink on it.   

The consultant prescribed a topical steroid with instructions about not applying too much for fear that I might thin my skin enough to allow the blood to leak.  These creams are sort of T-Cut, he told me.  They wear away the reacting layer revealing the pure, unsullied skin beneath.  A joy to behold.  I was also given special liquid which would desensitise my entire body.  Stop me scratching it.  You put it in the bath and lie there for a quarter of an hour.   You do this and after a while you feel like a fruit blanching.  Language is so imprecise here.  We need images.  But I don’t have them.

Did any of these procedures work?  Not really.  The only thing that ever made a difference was the prednisolone.  No sooner had I begun with my whacking 40 mg daily than the eczema vanished.  Totally.  It stayed vanished for the whole two years this condition has lasted.  And now the pred has gone the allergy is back.  But sod that.  Scratching is easy.  Getting down the road with frozen proximate extremities, rusted iron for feet and winter fogging the mind that’s what was difficult.

Zero

Zero is never nothing as any scientist will tell you.  It’s merely a point on a long and sliding scale.  The aim of anyone taking Prednisolone is:

 a) to get cured
and
 b) get off the dreadful drug

I thought I’d managed that.  My polymyalgia vanished into the sand and the steroid that fixed it tapered from 40 right down to none.  It had been a long haul.  Two years.  5 mgs a day this month, then 3 and then finally one.  I’d alternated between nothing one day and 1 mg the next.  I felt  fine.  Moving to zero was simple.  Just stop.  I had.   Perfect.  Bright skies, clean air, a sense that my head was my own again and nights were filled with unencumbered non-fat face sleep.  

Suddenly, however, there I was.  Less than zero.  Withdrawal symptoms sneaking out of the bushes.  Colds arriving and never leaving.  Small cut from my recently returned Eczema so slow to heal. Great physical exhaustions plaguing me.  Loads of sitting there staring out of the window without the energy to even check my phone for email or flick the pages of the newspaper.   

I read.  I managed that. John Williams’ Stoner.   Couldn’t put that down.  It’s about someone who allows the vicissitudes of life to dominate him and to dog him all the way from a promising lectureship as a young man to that state of never having achieved anything worth remarking about that faces so many at the times of their deaths.  Does it matter, I wondered.  Are we here to make a mark?  Do we need to leave something behind beyond a pile of old letters and a sack of worn out shoes? 

In the finality nothing matters is the standard approach.  Not mine, however. You have to grasp at life.  Put the Williams book back on the shelf.  Turn the Kindle off.  Get out there and write your own.  Don’t let life just fade to grey and then to ore grey and finally to black. 

What I’d discovered was that coming off prednisolone wasn’t really just a matter of stopping.  There are withdraw symptoms.  Withdrawal difficulties.  Things that keep you awake at nights.  Cold turkey wouldn’t hack it.  After a month of zero I returned and took a few.  Spent a week alternating iron and vit c tablets with good old white prednisolone.  Let the tiredness leave me.  Told the cat it was all alright.  Got up and turned the machine on.  Wrote a few thousand words.  Determined to write more.  Decided to take another prednisolone.  To spread the drop to zero over a slightly longer period of time.  To win ultimately but to do it slowly.  I put some bluegrass on the player and got the banjo breakdowns running.  Tea.  Another few hundred words.  Suddenly life looked better.  Love Minus Zero/No Limit  as Dylan has it.  It’s the No Limit part that’s important.  Check back, there never was a year zero.  Nothing is impossible.  It’s always something.

I’m back on no prednisolone again now.  The perpetual flu has lifted and the energy once again flows.  But I’ve those boxes of the drug out back still.  The ones I was going to send back to the pharmacy.  Maybe I’ll hang on just a while longer yet.

The Night Nurse Slumber

Deep in the NightNurse slumber the wind blows.  It’s a wind full of ghosts, fleeting memories  that skit across the mind’s surface and then fade into the borders like the wraiths they are.  When I surface, with a start, the real world appears as full of apparition as the one I’ve just left.   Motes, glimmers, rattles, thumps, distortions that shift and blur.  I tread water for a disorientating moment and then it all clears like bubbles surfacing in a glass. 

The noise outside is the men relaying the pipeline that supplies gas to the street.  I can see it, a giant yellow coil like a children’s treat being unwound into a hole right dead centre across a neighbour’s drive.  It sounds Industrial, just like Cardiff once would have.  Everyone waking to the hammer and thump of the steelworks, the rattle of the coal staithes, the trains steaming and clanging, and the ships hooting as they reached the docks. 

From up here on the hill I can see where it all would have been, the whole post-industrial landscape laid out before me, now gentrified with apartments and neat cul de sacs.  Places to house our rocketing population.  How does that figure?  When there was work aplenty Cardiff was half the size it now is.

The thing with colds is that no matter what you actually do they carry on just the same.   Their durations are fixed.  Work through them or give in and lie down.  Makes little difference. Pretty much the only thing that works that I’ve found is drugging yourself up with Lemsips and hoping for the best.  I’ve prepared a vacuum flask of these before now and carried it around with me all day.  Down the road they are advertising Hopi Indian Underwater Nipple Massage (£35 a go) as sure insurance against catching winter colds.  Good luck, I say.   

I reach for the Prednisolone, the morning routine of tablets to keep the polymyalgia pains away.  And then I remember.  I’m on zero now, been here for a few weeks.  The problem has been dealt with, diagnosed, treated, lived with at its maximum intensity and then lived with as it slowly oh ever so bloody slowly  faded down the scale for 10 to none.  Polymyalgia, the malfunctioning of the proximate muscles, common among older women, apparently,  and those who live like sloths.  A disease of the body that rattles and frightens you so much that you wonder if actually the whole thing is in the mind.  But it’s not.  It’s as real as bone snapping or bladder infection or thumps on the nose.  You take tablets to ward it off and it goes away.  If you are lucky then it does that permanently.

Am I  cured?  Could be.  In a drawer I have a large supply of the drugs.  NHS overprescription to ensure that I always had enough on hand to save me.  There is nothing wrong with the drugs in these boxes  but they won’t be recycled. They’ll be thrown away.   I’ll take them back to the pharmacist from where they’ll be sent for some sort of secure disposal.  I could try reselling them on the street, I suppose.  But then who would want a fat moon face and night fears followed by nose bleeds and an inability to go out?  I guess I’ll hang on a while, just in case the leg pains shimmer again.  Best be sure.

And this blog.  What do I do with it?  I’ve still got the spinal cyst  and my dealings with the NHS might have slowed just a bit but they’re still there.  Maybe I’ll change the name and carry on.  I’ll let you know.  Watch this space.