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.

Facet

So it goes like this.  I’m in the car driving back from the builders merchants with a boot full of home improvement requisites (batteries, screws, rubber gloves, a new saw with which to tackle the dead tree, a bucket, escutcheons, door knobs, glue) when the phone goes.  Being ultimately lawful I negotiate the bend and get myself stopped on the kerb before I take it.  With a voice sounding like something direct from Stella it’s the hospital.  Ringing me. Gosh.

It’s  UHW X-Ray here.  We want to get you in for your facet joint injection.

What?

Your facet joint injection I’ve got you down here for one. Mr Finch.  Yes?

Yes, but that request was made months ago when was in real pain.

Oh there’s a three month waiting list see love sorry can we do you Friday?

No.  I mean I was in pain, enough to boil eggs on my back at the time,  but in the nature of this cursed condition that’s passed now and I’m pain free again.  Well, relatively.   I don’t see the point.  Can I defer it?

I’ll put you down as a cancelation then.

No, don’t do that.  I needed that injection when it was the only thing available to me that could alleviate the pain and then it wasn’t available.  I had to wait.  When I rang up your department said they’d get back to me soon.  And it’s been 90 whole long days.  If I’d turned up at A&E after falling down drunk you’d have got me round to X Ray and checked my bones for breaks almost immediately.  But because I suffer from a condition (as opposed to getting pissed which I guess is just part of daily life) I’m slung on an NHS waiting list.  That’s not equitable.  I want the thing deferred so that next time condition strikes I can call down my already done waiting time and have the thing straight away.  Can I do that?

I listen but she’s gone.  It was my use of the word “equitable” I’m sure.  The line is dead.

I check the private medicine website.  Facet Joint Injections.  Available within the week.  £500.  Nye, your great vision has become terribly muddied.  I decide to go to the pub instead.

   

Coming Down The Up Stairs

Coming down the up stairs at UHW, just in front of the frightening full-length portrait of Aneurin Bevan in his overcoat, glowing like a warning to boarders, is a mother under full sail.  This one is wearing heavy flowing dark robes, a squalling child spinning at the end of each arm, a hijab wrapped tight around her full moon face.  She’s talking hands free, full pelt, and at maximum volume into a mobile that’s held to her ear by the hijab’s cloth.  Before her patients on sticks scatter.  I lean into the wall to let her pass.  You have to admire her style.

Outside the regularly ignored clutter of Trust notices banning smoking totally anywhere on the site have been supplemented by signboards that direct users to the newly provided smoking sheds.  These are also ignored.  The limp and the lame continue to smoulder and cough just outside the concourse doors, as they always have.  Gorgon guards.  Emissaries of the alternate world.

I’m back at bloods where history is repeating itself.  There are crowds.  Tickets fail to correspond to the numbers shown on the illuminated display.  The bandaged and the unable battle at the entrance, waving their arms, complaining about disorder.  Time flows by.  I does so slowly.  I read the contents of my wallet.  No book, mine left in the car in error.   Old receipts, a blue twenty, credit cards, bits of paper with phone numbers on them, my prednisolone users treatment card.  This contains stern and vital advice.  “If you become ill consult your doctor promptly.”  I’ll do that. 

Then I’m back at Rheumatology where my cascade of symptoms is noted and new tests talked about, done or booked.  Urine sampled.  BP taken.  Temperature written down.  Outside there’s a sun and it’s shining.  But the future is delineated with a mesh of new appointments and hours to be spent in long corridors waiting for my name to be called.

It strikes me then that none of this ever going to fully pass.  Life rolls from one failing to the next.  That’s its essential nature.  It arrives.  It shines.  It renews.  Then it falls apart.  All that’s in question is the speed at which this happens.  Slowing down the rate  is now my prime objective.  I shuffle in my seat, fish about in my pocket.  Come up with a mint.  Sure sign of age that.  Like admiring country and western music,  wearing hats while driving, and standing up when women enter the room.   A nurse does.  So I stand.  I smile.  Then I sit down again. 

Scan

Despite the PMR flare which had me sitting on the stairs with my head in my hands yesterday I decide to walk. It’s a fine day in between winter blasts, low sun streaming down the street in a great headlamp dazzle. I go past the Roath Laundry on the corner of Marlborough and Blenheim, its red brick outer walls still in place but its innards almost entirely demolished. There’s a man in a long ragged coat and knitted hat picking his way across the top of one of the rubble piles like this was a pit village in the 40s. A mechanical digger lifts a rusted RSJ and bends it as if it were rope.

I’m wearing loose clothing as advised. Track suit bottoms, t-shirt, sweat top, trainers. I shouldn’t feel out of place. I’m dressed as much of Kentucky Fried Chicken Britain usually is. But you lose authority weraing clothes like this, don’t you. Could you sell insurance door to door wearing Nike? Or if you read the news on TV dressed as a bag lady would anyone believe what you said? Probably not.

Beyond the parks, full of cyclists now we are suddenly allowed to ride on their paths, the tennis courts and the Lake end roundabout, lies Wedal Road. Before the coming of hard-topped roadways the Wedal was a stream. A tributary of the Roath Brook. It’s piped now, a lost Cardiff river, running below the road’s tarmacked surface. The Wedal Road dump, officially a council Household Waste Recycling Centre, has eighteen notices across its gates. These warn against climbing, arriving by truck, walking, being commercial and driving too fast. The latest, a splendid bilingual banner with a drawing of a pick-up truck at its centre, reminds dumpers that if they intend arriving in too big a vehicle then they will have to book.

Around the corner, beyond what was once the Allansbank but is now the Grape and Olive, is the hospital. UHW. The Heath. I’m heading for my first of four tests this week. Each will be performed on a different day, the relevant departments being unable to speak to each other and patient consideration being pretty far down the list. Today it is bone density. Prednisolone has a detrimental effect on bone thickness. The steroid thins. Osteoporosis sets in. A counter measure is to also take Alendronic Acid and up your intake of calcium. I’m on two Calichew daily and Alendronic (stand up, drink loads of water, then swallow) each week. The bone density test will put a measure on all this. Set a reference point to which in the future I can return. Are my bones now more susceptible to breaking? I’ve asked the GP that. Her answer was yes.

Outside the hospital entrance is the usual clash of signs banning smoking with the smokers themselves. White haired ancients in dressing gowns with bandages on their limbs resolutely puffing. Thin faced young men in wheel chairs with drips on wheels beside them pulling hard on roll ups. Well-dressed doctors and file carrying administrators going by without saying a word.

Bone Density measurement takes place in the Department of Medical Physics and Clinical Engineering, a place I’ve never heard of let alone been to before. It’s situated way up the main drag beyond X ray, Pharmacy and the Surgical Day Unit. The procedure itself is done in no time flat. I’m given hospital trousers as my loose fitting track suit bottoms, worn as instructed, turn out to have metal zips on the pockets. I lie on a machine that vaguely resembles the laser table in Goldfinger but lacks the straps with which to tie me down. This is a Bone Density Scanner but we call it a Dexa the nurse tells me. Put your feet here, stay still, breath, don’t breath, breath, there we are, done. Let’s just check. Okay. Get up slowly so you don’t fall over. Fine. You can go now. Put the pants in the dumper. Results will go to Rheumatology. Take two weeks.

I’m done, gone back down the long corridor to the exit, filled now with slow moving patients in robes and on sticks, theatre staff in blue scrubs, blokes in anoraks from Matalan, a man his head totally bandaged with only a small gap for his eyes, a woman carrying a ladder, a porter pushing a chair, a business man in an expensive suit.

Tomorrow I’ll be back. Bloods again. I can feel the polymyalgia there in my legs, a dull throb. Outside the sun’s still shining. But it’s lost its edge.