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.

    

Running

I’m running. I go past the lake, below the trees and on up the path. It’s a push and it’s a sweat. But then it’s supposed to be that. I’ve done it for decades. It makes you fit. It controls your weight. It makes you young.

I didn’t really begin until I was 40. Went out and found I could do it after all. You ran for half an hour and you didn’t die. Your legs didn’t come off. Felt good the day after too. Ate healthily. Began to get younger. In two months I got myself back to age 35. People I met would say, say you look good. Didn’t you used to be that bloke with the beer belly? Gone. Wonderful. I ran some more. I got back to 34.

After that, though, nature’s natural calendar kicked back in. Age returned. Been like that for twenty-five years now. Run to keep yourself on track. Run to control the weight. Run to think. Run to keep yourself in contact with the physical world.

That was until Polymyalgia (PMR) intervened. Aching legs, aching trunk, aching neck, aching upper limbs. Should I run? I asked the GP. Do what you feel you can was the standard reply.

To be fair my faithful friend Prednisolone has helped. PMR slows you to staggering stop but prednisolone lets you start again. Slowly.

That’s been the trouble. It’s slow. When you cease exercise fitness leaves at a prodigious rate. Getting it back is a mighty task. PMR reduced me from miles to almost feet. Could just about get myself down the lane out back when I felt fit enough to restart. Take 15 mgs Prednisolone, put on the running shoes, clamp the Nano to the ears with Santana on, out for five minutes, then stagger back.

Then the pains began. Leg pains, chest pains. The leg pains could well be skeletomuscular suggested the Rheumatologist. But the chest pains may need checking. Hell, off we go again. Another worry. Something else to get under my skin. I look it up. Furring of the arteries, angina pains. That could be it. Pain which runs across the chest. Is there while you exercise. Yep. Stops when you stop. Yes again. That’s me, that’s what it is.

In cardiology they’ve got me up on their running machine. I’m in day clothes and work shoes and have eight or nine leads attached to me. Just walk, the assistant instructs me. We’ll see how you do. Good, good, she says. Now I’m going to up the incline and see what happens. It’s slightly harder but not much. So the process goes. I walk, she turns up the pressure, I walk some more.

Gradually it gets so I’m running, Heavy shoes not the best for this but she’s so encouraging. You’re doing great, keep on. Many give up at this point but you’re fine. I’m on there for more than twenty minutes. Sort of sweating at the end. You’ve done excellently. I have?

The cardiologist returns and looks the results over. In between a conversational rambles about Ireland, the far reaches of Wales and recent fiction he tells me that I’m totally normal. Not a flicker of heart trouble. Nothing he could detect. Blood pressure brilliant. Cholesterol quite acceptable. Stop worrying about this. The pain is skeletomuscular, my other familiar friend. What do I do about it? Run to get to the other side.

You need to do an hour at a stretch three times a week, that’s the current Cardio vascular advice. I might not manage quite that given my prednisolone disability and the PMR still there deep down below my supressed immune system. But it’s good news. Whoopee.

On the way out I barely notice the smokers. I pass the Council dump on Wedal Road and give the operators a friendly wave. Time for a single malt when I get home. Yes yes.

Data Sheets

The was a time when the best you could expect from your packet of aspirin was an instruction printed on the outside that told you to take two when you had a headache. Half dose for children and the elderly. Just who the elderly were it did not say. It’s nothing like that now.

When I finally get round to it and unpack the Package Leaflet: Information for the User sheets that lie, folded and fierce at the bottom of my various packets of dope I know I’m in for the long haul. Set aside a few hours for consideration of the instructions it should warn on the packets’ outsides. I reach for my glasses and settle down.

The drug manufacturers, naturally, are trying here to protect themselves. They get into things in depth, as if this were some sort of EU regulatory obligation and this was the discussion appendix attached to an order in council or the support data for ministerial decision or, better, the scientific justification for a conclusion come to in thermodynamics, super string theory or cosmology. The clauses, sub-clauses and numbered and bulleted points proliferate before my eyes.

I learn vital things. Omeprazole can be administered by breaking open the capsule and pouring the content into a pot of yoghurt. The stuff is good for Helicobacter Pylori and Zollinger-Ellison syndrome as well as something described as the inhibition of the proton pump. There are a few E numbers in the capsule shell and then Oxide E172 along with Propylene Glycol in the ink used to print the manufacture’s name. Dr Reddy. Good man. Comes from Hull.

Most of the sheets are single pieces of paper but not those that come with Prednisolone. These go on for ages. They include warnings against just about every eventuality from falling down the stairs to having your face inflate the size of a Belisha Beacon and have a list of possible side effects long enough to unsettle even the most unconcerned of users. Are these things going to happen? And how many of them? Will they all occur at once? What will it be like going down the road sweating, with brittle bones, thinning of the eye tissue, painfully itchy skin nodules, weak arms and a humped back?

The more I read the more concerned I become. As a device to cover legal backs the sheets may be fine but in terms of patient care and support they are hopeless. You need a course in tranquilisers just to overcome the anxiety caused by the warnings.

I look a few things up on the internet. The results are worse. Everything is the end of the world. The dreadful always happens. It’s worse in America than here. Where NHS direct is circumspect and considered the US equivalent hits you hard between the see your physician immediately eyes.

I trail down to the GP’s to ask. Is all this bound to occur, I stutter? Will I turn into a slow-moving blimp constantly looking over my shoulders? She smiles. She has an excellent pull you down from walls manner. Of course not. But there may be some side-effects. We’ll have to see how it goes. Maybe they won’t affect you, they don’t affect everyone. Not everyone is the same. And anyway you need to consider all this against the background of the PMR itself. That condition is far worse. And you won’t be on the Prednisolone forever. No? No.

I get an appointment to come back in a week. Let’s see how you are then.

Taking the Tablets

When I get the bag of drugs home and lay them all out on the table I am overwhelmed. There are so many of the things. The brown tubs of Calcichew, the smart bright white boxes of Dr Reddy’s Omeprazole, and the small pink and orange op art boxes of Alendronic Acid, marked for ‘oral use’ in case you thought you might have to rub them in. But by far the largest in number are the toppling piles of Prednisolone, box after box. These are white splashed with green and blue, Damian Hurst could have designed them, maybe he did.

Inside are the detailed instructions. Package Leaflet: Information for the User. The small print. And just like that on an insurance policy, it covers every eventuality in the fullest of detail employing the smallest of print. No one is going to sue these drug companies for not giving out comprehensive and magnificently detailed information on just about every aspect of their product bar none. The leaflets even show where the drugs are made. The Prednisolone come from Eastbourne, where the Nazis would have landed had they come.

I have to take Prednisolone at the rate of 40 mgs daily, in the morning, and after eating. This means eight tablets. I push them out of the bubble wrap and swallow the first set immediately, just as I’d been instructed. It’s 10.50 am. Am I going to feel elated, nauseous, faint, spin headed, or pain free? It’s that latter thing I need so badly. Something, anything, to get these pulsing PMR spasms from out of my arms and out of my legs.

But there’s nothing. Not immediately anyway. But by the end of the evening, touch wood, throw salt over my shoulder, whisper it, the pains do seem be lessening. But they can’t be. Not that swiftly. Yet they are. I get my first night’s sleep in ages that doesn’t depend on big bomber pain killers and have in attendance inside my head the swirling fog.

By day three I guess the PMR has reduced from 100% active to something less than 10%. There are still trickles of pain, now and again. But nothing constant. And sleep comes so easy, it’s wonderful. Can this be the cure? Am I imagining it? I keep sending my mind down my legs and round my arms to check. Anything happening? Has it gone? Will it come back?

But it doesn’t return. In fact the trickles of PMR discomfort themselves start to retreat. As the days pass a certainty grows that PMR is fading. Everything is weak still, I find it hard to lift things and to crouch and squat. But the pain has gone or just about. Prednisolone, right now I love you. What else can I say? But steroids and especially this one are two-edged swords. As I’ll find.

Maybe I should check the detailed package leaflets next.