And now for something completely personal: an update

I’ve hesitated a long time over writing this, and I’m still not sure that I’ll get the tone right. It’ll be too long for most people’s patience,  but I want to share something that is such wonderful news for me, I’m not quite sure what to do with it, except go and scream it from the top of a blog. 

In September last year, I began to get headaches. I could just about work through them on painkillers, but on the way home from work one day, I knew that I was going to have to take time off. I went to bed and stayed there for 10 days. After that, the worst of them subsided, but the only way I could get through the day when I got back to work was by taking paracetamol and Ibuprofen together four times a day. I went back several times to the GP surgery, and eventually started on amitriptyline, which might have helped a bit, I don’t know. It’s supposed to prevent migraines occurring, rather than treat them, but I still seemed to have a permanent headache; at best, I could survive on one lot of paracetamol in 24 hours, but I’d soon be back on more frequent doses. 

Around January, I began to really worry about MOH—medicine overuse headaches. I had classic symptoms—MOH are a bit like drug dependency: the painkillers no longer cure your headaches, they practically induce them, because you begin to get a headache as a result of expecting your next fix of paracetamol. If that’s what’s causing your headaches, then the only route out seems to be to go cold turkey. No patches, no vapes for your headache meanwhile. I couldn’t do it.

The mid-season break in January came and went, and then my true “sabbatical” started. Taking leave had been a bit of an experiment, a rational rather than emotional decision. A lot of friends, as well as doctors, had suggested that maybe I was stressed. Headaches are not usually how stress affects me. On the whole, I have quite a high threshold for it; after the initial blow of a stressful event, I begin to relish the process of dealing with whatever it is—in fact, that’s usually my way of countering stress.  I didn’t feel I needed to take time off,  but once I started to think about it, I liked the idea. It would give me the chance to focus totally on the things I needed and wanted to do. And if stress was causing the headaches, then this could be the cure. ENB were very supportive, and we agreed that I’d return on June 1^st. 

The beginning of those four months was great. I moved fast on the remaining issues with the estate, and loved being able to focus full-time on my PhD, rather than fretting on the tube about what I was going to play for pliés—which, by the way, is a lot more mentally depleting than you might imagine. Nonetheless, giving time to the things that might have been causing me stress made no difference to the headaches. I’d also lost 14kg in the space of five months, without trying that hard, and I wondered if I should worry. I know now that I should have been more concerned than I was about having chills at night and waking up drenched in sweat.

Something else had changed too. After a lifetime of being an early-riser, often getting up before 5am, and having the best part of my day then, I would struggle to get out of bed until I absolutely had to. In the afternoons, as the paracetamol wore off, I’d not only get a headache, but also a feeling of “closing down,” as if someone were lowering a heavy diving helmet over my head. The window of time in the day when I could do anything productive got smaller and smaller.   I got used to the idea that if I went out in the evening, I might have to spend the whole of the next day or two in bed recovering. I’d force myself to go for a walk, because I was spending so much time sitting or lying down, but I’d be exhausted afterwards. I also walked slower than people twenty years older than me. I put it down to the amitriptyline, and also began to question myself. Remember those days in the lock-down when you found yourself sleeping at odd times of the day? Was I just vegetating? Was it acedia, the so-called noon-day demon? For almost a week, I only managed to listen to countless episodes of A Good Read and The Life Scientific. 

Arm-ageddon strikes

In March, I’d noticed a couple of times that my arms felt a bit fatigued playing the piano, but put that down to not playing for class and rehearsals for a while. In a recording session, I noticed that my hand misplaced a chord that I would normally have played without ever thinking about it. It worried me—had my hands become so inflexible I couldn’t make a simple stretch to find a chord? I played for a Passion Play at Easter at St Martin-in-the-Fields, something I’ve done for the last few years, so I knew what it should feel like. Everything seemed fine, apart from feeling just a bit less confident, more accident-prone than usual. Again, I put it down to being away from playing for a while.

A couple of weeks after that, I went swimming to try and build some stamina and strength for the scores I would be working on (Sleeping Beauty, Romeo and Juliet, Symphony in Three Movements), and that’s when something just happened that I couldn’t understand. I’ve swum almost all my life, and even if I’ve left a gap of a few months, I can do 500m easily, and within three sessions, I’ll have got back to doing a fairly fast 1k regularly. But this time, I did two lengths of a 33m pool, and halfway down the second one, I felt I couldn’t do any more—not because of lack of stamina or oxygen, but because my arms just seemed to seize up, and were too painful to move. I rested, and then one at a time, I maxed out at 6 lengths. I tried again a few times over the following days, but it was no better. 

That fight scene . . .

I tried Romeo and Juliet again. The sword fight scene always needs a bit of dusting off and revising when you return to it, but for me, it’s also a good guide to where your technique is going to be for the rest of the ballet: I know that if I still basically have that scene under my fingers then the chances are, the rest will be OK too.

But this time, I couldn’t play even a few bars without stopping or seizing up. It was as if I’d never learned it before.The problem seemed to be more the left hand than the right: I didn’t have the strength to keep the oom-pahs going easily, so the right hand fell apart. The same with things from Sleeping Beauty that I’ve played since forever. It occurred to me that part of the problem was related to that thing in Heidegger about things which are zuhanden rather than vorhanden: until it breaks, you don’t notice a hammer as an object in itself, you use it without having to reflect on it as a thing. What was happening to me that my hands themselves were becoming “vorhanden” rather than “zuhanden.” They were strangers.

I kept trying this with other things, and found the same; I used a stopwatch to see every day how much I could play without having to stop from pain or seizing up. It was always around five minutes. Then other things became more difficult: ironing, putting on socks, doing up buttons, emptying the dishwasher. And the worst? Folding washing. Something about the position of the arms folding a pillowcase caused pain and exhaustion so bad, I’d have to lie down. Not only that, I was developing what turned out to be Raynaud’s syndrome—if I so much as walked past a cold cabinet at the supermarket, my fingers would go cold and white, and begin to get numb. 

I tried doing more of things: more swimming, more practice, more walking; but this didn’t help, in fact it made things worse. Not only could I not manage much at the piano any more,  my hips were beginning to be so stiff I couldn’t bend down, my arms so weak I could barely dress myself. I began to realise that I might not be able to return to work in June. Mentally I couldn’t do much more than do the crossword and listen to the radio. I went to the GP. Blood  test results showed I had raised inflammatory markers, but no sign of infection, and I got a message to say that I should book an appointment to see the doctor. After forty minutes (of a 10 minute appointment!) going through everything, she referred me to the hospital for more investigations. 

For three weeks, I went backwards and forwards to the hospital for tests and scans, including a referral to the rapid access cancer clinic “just to rule it out.”  On my birthday, of all days, I saw the oncologist who said right away that there was no sign of cancer, and so the diagnosis looked pretty conclusively like giant cell arteritis (GCA). He referred me the same day for a doppler scan, and then to the same rheumatologist I’d seen a couple of weeks earlier. He confirmed the diagnosis, and put me on a course of corticosteroids starting the next day, telling me that I’d probably feel a lot better within three days. 

The happy ending

In just 24 hours, my life changed. The headaches I’d had for nine months disappeared; I could walk twice as fast, I had energy and motivation. I can play the piano for 20 minutes at a time. A few weeks before, I had been talking to a friend and saying that I didn’t feel depressed, but had somehow lost hope (though I didn’t call it that at the time). Interestingly, an article on steroids I read recently pinpointed exactly this—the return of hope—as an effect of the medication once your inflammation is treated. 

I still have a way to go before I get full use of my arms back, and the weird thing with my memory for music that I’ve known for years still persists, albeit with a positive side-effect: the impairment I feel requires me to rethink and re-practice from the start, rather than just touching up and dusting off things that I have known for years. In the process, different memory seems to be building. My memory for music used to feel as if it lived in arms and hands, now I’m having to re-route that memory back into my brain, and think more about what I’m doing, or rather what music is doing.

And finally . . .

Is there any takeaway from all of this? I just wanted to share what’s been going on, but I also have a few thoughts.

I remember my 90 year-old dad  saying dejectedly after a battery of tests at the hospital “They [the doctors] couldn’t find anything,” as if they’d  been looking in vain for a ten pound note that he’d dropped. I laughed it off, and said “but that’s a good thing, isn’t it?” Now I understand why he was dejected: the worst possible news for me would have been to hear that there was no identifiable cause or solution to what I’d been feeling. I’d have to live with it, and perhaps even take the blame for it: if the doctors can’t find anything, then you must be malingering or doing something wrong. I felt a lot of guilt, often provoked by all the articles you read daily about people who start a new life at 70, or are still working at 90, running marathons or wing-walking at close to 100.

I thought also of my mum, who was an artist; she once said that you needed just the right proportion of things you want to do in relation to the things you have to do, because the one feeds the other. When I became unable to do routine stuff like empty the dishwasher, iron my clothes, or sweep the floor, all the things that used to give me joy disappeared as well. As soon as I had the energy back to do the chores, my enjoyment of playing the piano, reading, writing, came back. Until I got treated, I didn’t realise how bad things had become. Contrary to the saying “you don’t know what you’ve got until you lose it,” it was more that I didn’t know what I’d lost until I got it back.

Above all, I can’t praise the NHS —its staff, its systems, its ethos. From the moment I got referred from the GP, I’ve been for tests and scans three or four times a week for three weeks, and the consultants left no stone unturned. They weren’t content to guess at a diagnosis until they’d ruled everything else out, and wouldn’t take a risk on anything without having tests to back it up. I literally owe my life to these people, and I’m very grateful.