Mahler, Lieder, Helicopters and Prednisolone

It’s been a hard week trying to reduce the level of prednisolone. I feel a bit like an alcoholic. I deny that the stuff means anything to me and then can’t wait to get the dose down my throat. I’m trying to drop from 15 mgs daily to 10. The advice is to do this as slowly as I can. But every time I manage to reach target the pains start up again. They hover out there in the wilderness waiting to pounce. As soon as my mental barriers are down then in they come. And like police raids they usually operate at dawn.

This morning things were so bad that I considered for a moment not bothering to get out of bed at all. I could hear the drivers in the street outside scraping away at the frost on their windscreens. A couple of them, I know, were using their credit cards. These things have many uses. Portable ruler for drawing straight lines, thing for scratching the side of your nose, opener for recalcitrant front doors when you’ve mislaid your key. Used to be okay for that but I seem to recall snapping my Barclaycard in two the last time I tried it. So maybe Yale has at last got wise.

But I overcome. Rise above it. Get myself up and through the morning’s ritual of tablet taking and healthy porridge. I then through what’s now drizzle to the waiting hospital. Here I am again. I’ve arrived early enough to park on the ground floor and to enter the concourse at the same time as the morning shift. The drifting resident population of blokes with buckets and women in washed-out hospital gowns, men on sticks, relatives staring into space and staff in scrubs looks totally unchanged. We ought to hold a concert or two here, cheer everyone up. Brass band music, bluegrass, a poetry reading. Ifor Thomas with his poetry about the prostate would go down well. I might suggest that.

At the bloods clinic, jammed up the corridor somewhere between eyes and my friend, distant rheumatology, there are at least half a dozen people already waiting. The place doesn’t open for another quarter of an hour. You get there before half eight love and you’ll be first. Hum.

I take a number from the ticket machine rather as if I were at the cheese counter in Tesco. I get 04. Not too bad. Bloods entrance has a large and bold painting of a brown unicorn beside it. The unicorn’s horn is long, thick and severely pointed. I start thinking of needles. I do not get on with needles. Not at all. If I watch I faint. It’s happened before, a grown man helped out of the clinic by tiny nurses. Told to sit and drink some water. Happens to lots of people, love. You have a good rest now. God, there’s just too much of having a rest in life. Live now, rest later. This time I decide that I definitely won’t look.

When the clinic opens there’s a fuss. The electronic number display asks for patient 01 to present themselves but a shouting woman in a wheelchair has managed to draw a ticket numbered 00. I was here before you, she complains to an insistant man holding ticket 01. I’ve been here ages, I have, and I'm not waiting anymore. A nurse intervenes. Patient 01 acquiesces. 00 rolls on in.

Why are they testing my blood again? To measure my CRP and ESR rates. That’s C-reactive Protein and Erythrocyte Sedimentation. These show if inflammation is present in the body and are a good indicator of PMR and how the prednisolone might be going down. Both of these levels were elevated before diagnosis but have come right down to normal since the prednisolone was prescribed. But here I am wobbling on the edge of pain recurrence so I’m expecting something to have changed. Not that I’ll know until I get the see the rheumatologist again next week.

My blood samples will be analysed on the premises and the results put onto the central database. Interested parties can then call details up at will. Well, they should be able to. But the health service seems riddled with slow performing hardware, faulty displays and cranky software systems. This is set against a massive raft of regulatory concern over confidentiality and permission. For me I don’t really care who knows my ESP level. Next week when they tell me I think I’ll post it here.

The test itself is over in under two minutes. I’m secured with cotton wool held in place with what looks like parcel tape. I'm back in the corridor in under five. Could be the day is improving. The walking seems to have lifted the residual PMR discomfort and finding my way back out is a push over now that I’m the next best thing to a resident.

Home and I return to 1967 retreaded. I’m working on a concrete poem sequence in the style of those that once graced Hansjorg Mayer’s poster-poem futura series. Jonathan Williams, Diter Rot, Louis Zukofsky, Augusto de Campos, Ian Hamilton Finlay, Reinhard Dohl. The artist Antonio Claudio Carvalho is reviving the idea for 2012. My piece will somehow mix Mahler, Lieder, helicopters and prednisolone. I’ll let you know how I get on.

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.