Chemists

At the Chemists I am now a familiar figure. The shop is really just another waiting room with make-up and perfumes on the wall, a privatised branch of the NHS where you hang around until your number is called. At this point you once had to hand over cash but now, this being wonderful Wales, you don’t. I’m there collecting the usual shedload of Prednisolone, Omeprazole, Calcichew and Alendronic Acid. Boxes, packets and tubs. For reasons I can’t quite explain the extra Vitamin D I’ve been told I need don’t come on the prescription and I have to buy them myself. But the rest is uncharged, courtesy of Aneurin Bevan, praise be his name.

Usually I get presented with the biggest bag the Pharmacists have and stagger out under its weight but today I’m beaten by the woman in front. She’s wearing a sort of dinner lady’s coat and has a series of dirty looking plastic carriers hanging from her arms. The bag she’s given is so big that it looks as if it might contain everything from oxygen cylinders to a spare artificial leg. There’s a clanking rustle and gush of cold air as she tries unsuccessfully to negotiate the door to get back into the street. I assist. I’m an old school gentleman. I get no thanks, not that I’m asking, just a slight smell of stale dog mixed with wet coat. She ought to bring her wheelie trolley, says the assistant behind the counter. Free NHS forever. I nod.

I’m offered the new we fix it for you and sort your GP deal – complimentary for me and for anyone else that wants it for that matter. The Pharmacy will call my GP monthly and order my drugs. They’ll collect the prescription and then make it up. All I need to do is be at the end of a phone when they call to ask how many tablets I need and then be able to walk round to their shop and actually collect the stuff. So slick. A wonder. I sign up.

But sometimes these things go wrong. Back in my pre-Steroid days when my slight eczema, about the only thing I had wrong with me, was controlled by tubes of DiproBase. I was once prescribed cream but given ointment by mistake. This came in dozens of small tubes which are still stacked in my cupboard upstairs. I should return them, or throw them out. Prednisolone’s one great advantage (other than its main function as a PMR suppressant) is that it appears to sort out itchy skin. But I’d have that back any day.

Back on Newport Road, my main drag, the land where it’s pretty hard to spot a permanent resident, the world rolls on. Up near the funeral home the immigrant Eastern Europeans are standing leaning on their garden wall, cigarettes lit and cans of lager in their hands. It’s a hard life and it’s not yet 10.00 am. The push chairs are rolling and the Africans pass me on their bikes. East Cardiff centre of the world.

Songs with Prednisolone in the title: none

However you can listen to The Steroids, DJ Steroid, The Steroid Kiddies, Steroid Freak Pussy, A-Steroid and Steroid Maximus on Spotify. You can do it anytime you want. My guess is that those bands’ steroids are to do with enhanced performance rather than moon faces.

But back to the blog. You can tell this is an up day, can’t you? I must take advantage. Some days have more black dogs than others. Not all days are the same.

Alarm

Outside the hospital the smokers gather again below the Please Refrain From Smoking notices. They look the part, their faces lined and drawn. They are outside, at least, in the wind. Their hospital issue dressing gowns sop up the pervading drizzle. Inside the usual melee prevails. People on sticks, doctors in suits and gowns, nurses, ancillary staff, mothers with push chairs, a man in a turban pulling a suitcase, folk queuing for sandwiches and papers. Smith’s pushing their huge bars of chocolate, a pound a go today with any purchase, no one buying. This is the NHS shopping mall: St David’s Two without the luxury, Bluewater less the desirability. You are here because you have to be. Unless you are a record collector, that is. The Christian bookshop, stashed over there in the far corner beyond Boots, is selling off a lot of its record collection. I got Rod Stewart and the Steampacket for £2.00. I saw that band, in the mid-sixties when Rod was nowhere yet and Long John Baldry was taking the lead. The Steampacket live at Klooks Kleek. Back here in suburban Cardiff where little ever happened I lived out on that experience for months.

I’m heading for Clinic Six again, Rheumatology, home of prednisolone my friend, and hope for the future. Half way there, wending my way along the patient strewn corridors, the fire bells starts. It’s a loud, piecing scream. It throbs, it pulses. It’s incredibly loud. It enters your ear and it stays there. Your head swims in accompaniment. You begin to wonder if there’s any way you can still get your brain to carry on thinking now this sound has arrived right in its middle. I expect to see fire wardens rushing to the aid of us staggering patients or, at very least, some instruction coming from the NHS’s uniformed staff. But there’s nothing. The alarm is ignored. Staff continue to go about their business as if all this wasn’t happening. Can they not hear it? Why are they not flinching like I am? I shake my head. The sound is entering my bones and making them rattle.

Eventually I reach Rheumatology reception where the woman behind the counter tells me over the racket that because the alarm is intermittent we can safely ignore it. You mean it’s a test, I ask? Someone upstairs has burned the toast I expect, she says. She smiles. And then it stops. The air fills with silence like cool cool water. Glorious.

I’m still in pain, right leg, from the heel to the top. The pain arrives and stays for days. Does it get worse when you exercise it, the rheumatologist asks? Sometimes. Just the sort of answer I am sure she wants. I’m sent out for more tests. We have to get to the bottom of this. X-Rays, trunk and upper leg, put on the list for an MRI scan, sent to bloods to let them have just a little bit more. I feel like Tony Hancock. I’ve given them at least an armful now. Back in two weeks. There’s something happening here but we don’t know what it is, do we, Mr Jones?

Skeletomuscular

The flare is not going well. In fact it’s not going at all. It’s been there along the whole length of my right leg for about two weeks now. Throb throb. A big polymyalgia echo with an attendant and depressing fog accompanying it. Not, naturally, that I’m allowing any of this to slow me down.

I’ve just done a six mile amble round the headland from Mumbles to Caswell Bay on Gower. Bright sun, lots of stiff breeze and not really that exerting. For a wild in the country walk the whole thing turned out to be extremely civilised. The trail was mostly concrete-topped with a regulation handrail on the seaward side to prevent those likely to sue the Council from falling off. People passed me carrying plastic-lidded Starbucks-style cups of coffee bought from any one of the many branches of the Surfside Café who have clearly won the contract to provide refreshment along this stretch.

Could you tell I was a sufferer? Not really. It was only on the uppies that I slowed more than I once did. Leg muscles pulling. They never used to do that.

I get on the phone to Rheumatology. There’s a number on my appointment letter. I reach the Appointments Hot Line where the only thing they can suggest I do is call the hospital’s main number and ask to be put through. So I do that. But there’s no reply, just endless ringing. Switch board off at lunch.

I hunt the web and turn up a page clearly put there by Rheumatology itself. There’s a number. I dial and reach it. A recorded voice tells me that this is the Rheumatology Advice Line and would I leave a message. They’ll get back to me. But there may be a wait. Useless.

Eventually, after delving through my files of past hospital correspondence and appointment letters for various things, still active and past, going back several decades, I unearth a different general hospital number. I try it and, wham bam, I’m speaking to a real person. They put me through to rheumatology. It’s all pretty straightforward after that.

The flare from my description is not sounding much like a flare should. What I’ve described, says the rheumatologist, sounds more skeletomuscular. I get an appointment to go in again sooner rather than later. Plus the advice to reduce the prednisolone dose immediately. Let’s forget about the 20 mgs I’ve been trying because the flare was so awful. Instead we’ll go down from 15 mgs to 12.5 mgs daily. Will that lift the spirits? Ought to. I take a long stare into my Lumie SAD lamp, the Mediterranean once again flooding my study. I’ve got Mahler on the player, a bracing choice for a dull Tuesday morning. I go over to the machine and turn it up.

Clinic Six

I’m at Clinic Six. The room is full of people on sticks. They are on crutches, leaning against poles. They’ve arrived with helpers. Turned up on their invalid electric bikes, their automated wheelchairs, their machines for getting around. Rheumatology. Where the world is clearly worse than I imagined it to be. I check in and wait. Read my book. And I’m the only one. Everyone else stares into space.

The NHS Trust here has recently extended its ban on smoking to everywhere on the premises – wards, corridors, ante-rooms, porches, car parks, walkways, gardens, open spaces, under trees, below lamp posts, in the rain and the wind. Totally banned. The nearest place you can now light up is at least a mile and half from your hospital bed, out there beyond state control, in the place where the locals live.

Outside, next to the signs reminding all that cigarettes have no place in an establishment created for the improvement of health, are a line of dressing-gown clad loners. They all have lit cigarettes in their hands. Smoke drifts across the pathway. No Butts No Smoking. Clean Air Zone. No Smoking In This Area. CCTV In Operation. Enforcement here is clearly a problem. Oblivious the smokers stare before them in a distracted daze.

Back in rheumatology I get the full treatment. A thorough body inspection, joint testing, chest listening, pressing, pushing, bending or arms and legs. This is the kind of check-up that the GPs of old would have engaged in but now they no longer have the time. I describe the history of my polymyalgia, the symptoms and their duration, their severity, what I did and what I did next.

We talk about the diagnosis and the treatment I’ve received so far and its effectiveness. I mention the flare and the fact that this return to pain doesn’t seem to be moderating much. I’m advised to stay on 15 mgs prednisolone for at least another week before considering a change. The dosage taper I’d been following was probably too steep. Fear of Prednisolone is one thing but without it the PMR comes right on back. Stick to 15 mgs one day then try alternating that with 12.5. See how you get on.

However, we still need to run a few tests, the rheumatologist says. I’m given a pile of envelopes and request slips, nine of them, and sent out to the nurse. More tests than I knew were possible. X Ray, ECG, three different sorts of bloods, urine (again), bone density, stress, some other stuff. I set off among the corridors looking for Bloods, then ECG, the urine nurse, finally X Ray. This is no good, declares the receptionist, giving me a smile that would frighten horses. This request is undated. She waves my bit of paper in the air. You’ll have to take it back. I look. She’s right. No date. I go to fill it in myself. You can’t do that, shouts the receptionist. Only the consultant can. Right, fine. I exit, lean against the wall in the corridor, breathe in and out a few times, complete the date in biro using my left hand, and then return. Bumped into the consultant outside, I say, my lucky day.

The X-Ray takes 30 minutes. Shirt off, sat in a corridor full of blokes in vests accompanied by their track-suit wearing wives. I read my book again. No one else bothers.

When I get back to the rheumatologist she’s already got my ECG print-out and tells me that it looks pretty healthy. Your joints were fine too. For the other stuff I’ll have to wait. For the bone density and the stress test I’ll need to come back. We’ll see you again in a month. Right.

When it’s all done and I’m back out on the free streets where the whole world could well be in action smoking if they wanted to but aren’t I ask myself how I feel. Better. Worse. Reassured. The last mentioned, I guess. Talking about all this helps, having someone demystify its complexities and offer real practical advice in itself improves health. Back home the spinach leaves, the carrots, the lo-salt crackers and the calorieless sweets await. The fight against face inflation, back hump and round the middle flab continues. Any donut shops between here and there? Nope.

Donuts

I’m in the pub. Well, it’s not actually a pub but a hotel. It’s one of the few places in the centre of Cardiff, currently stag night capital of Britain, where you can get a quiet drink and a seat. Only tonight there’s a wedding on. Reception is full of shrieking families, running kids on sugar highs and fat bellied men in uncomfortable suits. The noise is terrific.

Don has just told me the story about buying a jam donut. Not a thing he does often but on this occasion, a pale morning walking in Penarth, he was just overtaken by desire. I know the feeling. Prednisolone brings it on me all the time. The entrance to Greggs was blocked by lounging youth, hooded, fags in hands, every other word they uttered an expletive. So I ****ing says **** you ***, **** off. Normal conversation, for them. Don objects. There are women working here, he shouts, you’re offending them. Move off. He points his arm. Amazingly they go. No attempt made to swear back. It must be something about how Don looks.

Inside the shop the staff thank him profusely. What did you want, love, asks one of them. A donut. Have this one on Greggs. A donut free, tastes even nicer. Don is delighted. How much do they cost, I ask him. £1.50 for five or 35p each. As little as that. I could do with a bag right now.

We get onto talking about illnesses, hospital visits and inevitably my life on steroids. It’s the way of the world now. I’d never heard of polymyalgia, says Don, but now everyone seems to have it. There’s at least two at the golf club. One of them has increased his collar by at least two sizes. My fear, that one. Not happened yet but I’m still waiting.

The prednisolone experience is different for everyone. Some balloon fairly quickly, it seems. The moon face arrives and stays until the dose tapers to lower levels. Depends where you start, how you are, who you are, how much you eat. The steroids move weight around is the official line. Male sufferers I’ve talked to all report a certain bagginess around the middle but not everyone ends up with a round face.

Here I am this morning checking how I look in the mirror. Like I was yesterday and that was pretty much how I was the day before that. I had two drinks in the bar last night. Managed them okay for once. Alcohol isn’t what it once was. Nothing is.

I check the cake tin. Empty. Been that was for a few months now, ever since the PMR first showed. How far is it to the nearest Greggs I wonder. Not far. Donuts. Mmm. A difficult desire to resist but I manage it. I have an apple instead.

Flare

This is a word I’d barely considered in the past. A flare was something that temporarily lit the sky, that burned bright and long and cast shadows in strange colour over all it touched. Flares came out of guns and flew into the air. I’d never fired one. Never been near anyone who had. A flare in the night, a brief and fleeting streak of light that was there and then gone.

Polymyalgia flares don’t quite do this. They are something else.

My steady reduction of the Prednisolone dosage had been going well. 20 mgs down to 15 mgs daily with no perceptible change in how the condition felt. Then, on the advice of the GP, I made an attempt at talking 15 mgs one day and 10 mgs the next. See how you get on with that, she’d advised. Don’t go any lower over the Christmas period, we want to avoid problems then. We do. But then problems at Christmas come with the territory, do they not?

So what did I do? Followed her advice to the letter, set about the new 10/15 fluctuating dose the week before the festivities, followed the regime through the days of joy and holly, pudding and cake, drink and dancing, carol singing and wishing you could find a quiet room to lie down in. And then, unaccountably, and in a rush of I can do this thing bravado I knocked the dose down again. A week ago. Reduced to 10 mgs daily. I’m getting away from you, Prednisolone, I jeered. I will subdue your power. I will overcome you. I will win.

Days one to three at this new lower level went well enough. The nose bleeds lessened, the sleeping patterns began to steady, the depressions held back. And then I started to feel it. That polymyalgia echo up the backs of my legs, that steady pain of the proximate muscles that nothing seems able to shift. First one leg then both. Throb throb. Throb throb. Pain again for the New Year weekend. Just what I had been warned to avoid.

To fix it I’ve put the dose back to where it was several weeks ago. 15 mgs daily. And it has taken at least three days at this older level for the flare, because this, it seems, it what I have been suffering from, to subside.

It’s a setback, a depressing reminder of what lurks beneath. Polymyalgia is not cured by prednisolone, just held down. It’s like a carpet that covers a ugly floor. The sight of it may be gone but down below the floor is still there.

I’ve turned my SAD lamp on again. This is a my Lumie Mediterranean light wonder, a certain cure for winter depressions. Sitting in front of it is a joy, even with prednisolone coursing my system and PMR mumbling underneath. I’m playing Roy Orbison records and allowing the great man’s voice to soar upwards and take my spirit with it. It’s over. It’s over. Problem is it’s not. Not yet.