The Ugly Sisters

This week has been a fusion of poetry, health stuff and life. The life and health stuff got in the way of the poetry a bit. I’ll put that balance right this week.

In November 2013, following a particularly rigorous aerobics session at the gym, I became very stiff. Nothing unusual in that, you say? Except the stiffness didn’t go away after a couple of days. It didn’t go away after a couple of weeks; it got worse. I suspected I’d pulled a muscle and went to see my Doc to arrange physio. She opted for blood tests, which surprised me. Who orders blood tests for a pulled muscle? She suspected Polymyalgia Rheumatica, an autoimmune disease that makes your own body attack its healthy muscle tissue, causing inflammation, pain and stiffness in the shoulder and pelvic girdles. I’d never heard of it. The diagnosis relied on testing the inflammation markers in the blood. Sure enough, the inflammation markers were raised and PMR was diagnosed. The treatment is to take a daily, and slowly reducing, dose of steroids for about eighteen months. Six and a half years later I’m still taking Prednisolone and the autoimmune system is stubbornly refusing to sit down and behave itself.

Originally I took the steroids, as directed, for eighteen months. I reduced gradually from the original 20mg to 2mg. I started to get pain in my scalp, sharp and relentless pain like an invisible crow pecking my head. Paracetemol taken 6 hourly improved the pain for about an hour and a half before the crow was back. I’d read somewhere that headaches can be a cause of concern with Polymyalgia, because it might signify PMR’s ugly sister, Giant Cell Arteritis, which if left untreated can cause permanent blindness. The statistics go something like this: about 25% of the population, mostly women over 50, will contract PMR. Of those about 25% will also contract GCA; which calculates to roughly 6% of the population becoming acquainted with both ugly sisters. How lucky was I to be diagnosed with GCA? The Prednisolone dose was increased to a massive 45mg, I was referred to a rheumatologist and had to start the process of steroid reduction all over again.

In April 2018, I eventually managed to reduce the Prednisolone to 0mg. I had a small celebration as I took the last dose. Don’t get me wrong, Prednisolone had given me a quality of life that PMR/GCA was trying to deny me. But Prednisolone brings its own challenges. For instance, it gives me a very visible tremor in my hands, worse in my right hand. I’ve had to teach myself to eat soup left-handed because the right hand is just too messy! Chopsticks? Left handed. Spaghetti bolognaise? Left handed. Pred can also affect the voice, making it shaky and pitching it higher than ‘normal’. Mood swings? A by-product of Pred. So it was good to be off the steroids at last. Except it didn’t last. By the autumn of 2018 the stiffness was creeping back into the shoulder and pelvic/thigh muscles. By December 2018 I was walking like a ninety-year-old, having to be helped into taxis, finding stairs a challenge. Doctors refused to accept that the PMR was back and treated me with physio for a suspected shoulder injury. At last, on New Year’s Eve 2018, a locum at my local surgery agreed to give the steroids another trial. Within hours the stiffness and pain were improving; when I saw him again three days later, I was walking normally and was pain free. That’s what Prednisolone does. It’s a magical drug with nasty side effects. I love Prednisolone but I hate Prednisolone: ambivalence writ large.

And here I am, fourteen months later, having reduced the Prednisolone to 2mg, still taking the tablets. Except when I reduced to 2mg, the stiffness in the legs returned, notably after sitting down for any length of time. Once I’m up and moving it loosens up, and I’m fine; but it’s worrying that it manifests after sitting, for instance in the evening when I’m watching telly. So I went to see my doctor again this week. She has advised a slight increase in the Pred again, and more blood tests to see what the inflammation markers are doing. A tiny percentage of people need to be on small doses of Prednisolone for life. I’m beginning to suspect I might be among their number. Which is fine; but don’t sit at the next table if you see me trying to eat soup, is all.

Bill also had health stuff going on this week which I won’t elaborate on because it’s not my story to tell; but it involved spending best part of a day at Rochdale Infirmary, and a CT scan for which we’re awaiting results. Because I’m a terminal optimist I know it will be fine; but I might have my fingers crossed, just a bit.

So, life has truly got in the way of poetry this week; but it hasn’t entirely blocked it out. I had Tuesday free to do poetry stuff and that was my favourite day this week. I sent out my Stanza mailing, calling the group to the Buffet Bar at Stalybridge Station on Tuesday 25th for the February session. We’re having an anonymous workshop this month; members send me an early draft of a poem that they’d appreciate some feedback on. I put all the poems together in a standardised document, without any identifying markers, and send it out to all who submitted in time for the meeting. At the meeting we read and discuss the poems, offer positive and constructive feedback. At the end of the evening we have the big reveal when we find out who wrote what. So far, I’ve received six poems and one apology. So our group, which was on the endangered species list a couple of years ago, is rallying and altogether looking healthier. Which is lovely. I’m looking forward to reading the poems and meeting up on Tuesday to discuss them.

On Tuesday I also wrote up the work I drafted at the Manchester Art Gallery, at the Poetry Business Writing Day. I love this aspect of poetry: getting new stuff on the MacBook, moulding it, shaping it like clay until it forms a satisfying whole. I’ll leave them for a few weeks and come back to them with fresh eyes. Peter Sansom reminded us at the Gallery that you can work a poem too hard, until you work the life out of it. So I’ll leave them to breathe a bit, come back to them when I’ve almost forgotten them, find surprising stuff in them I can’t see at the moment, while they are too young.

The last, and very satisfying, poetry related thing I’ve done this week is book a hotel for the weekend of the Kendal Poetry Festival. Check out the festival here: https://www.kendalpoetryfestival.co.uk  I’ll be going with my poetry twin, Hilary Robinson. We’re planning to take our annual Line Break the week following the festival; but we’ll be hiring a holiday cottage for that and we can book that later. Hilary’s enjoying time with her granddaughters this week, so we’ll meet up and start planning Line Break when they’ve gone home. No rush, it’s still four months away.

Yesterday was the Poets&Players event at the Whitworth Art Gallery in Manchester. Unfortunately I had to miss it this month, but you can find links on our website to the YouTube videos when they’re prepared: https://poetsandplayers.co  A family friend in Peterborough is having a hard time at the moment and I went with Amie to offer some love and support. We met up with my elder son Richard and our friend and went for a late lunch in Peterborough City Centre. I hope she was feeling better when we left. Sometimes life is just too hard and all we can do is show some support and try to grow a few smiles. We had a lovely day. We’ve even planned a long weekend away at the end of August: Richard and said friend both work in schools, so school holidays are when we can all meet up. Family time is very precious.

I’ll leave you with a poem I wrote at Leighton Moss Bird Reserve on our Line Break last spring. Hilary and I can’t be accused of being serious bird watchers, not really. The real ‘twitchers’—is that what they’re called?—were there in their camouflage gear, binoculars around their necks, the Eye Spy Book of British Birds peeking from jacket pockets. We were there in our usual bright jackets, sunglasses, poetry journals in hand. So perhaps it’s not surprising that we didn’t see the birds the woman in the visitor centre gave us the heads-up on. They spotted us a mile off and kept their distance. The scones in the café were good though.

 

Leighton Moss

I’m scanning the sky for marsh harriers,
Nureyev and Fontaine
in an ariel pas-de-deux of feeder and fed.

But all I’m seeing is the dipping and dipping
flight of tits, swifts catching an in-flight meal,
the black capped gulls soaring and landing
spooked by the low flight of helicopter.

My ears are tuned for the call of Cetti’s warbler,
the chiff chaff of the chiff chaff,
the boom boom of the bittern
but all I’m hearing is the territorial robin,
the garden gossip of blackbird and sparrow
the low hum of a distant iron bird.

Rachel Davies
May 2019

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