A song from The National’s latest album came on shuffle today and I was immediately transported back to my garden this summer, feverish and in pain, not always able to walk more than a few steps or repeatedly lift cutlery to my mouth, but sitting out nonetheless, drinking a glass of rose.
It’s funny how people’s perception of illness are reliant on a kind of value-based system. Being ill is largely tedious and to be either not approached at all or with trepidation, some people even asking me what they should say to me. Having been ill is different, met largely with relief, sometimes respect, and the need for a conclusion. I think this is well known in linguistic theory – an anecdote usually follows the pattern of: it was an ordinary day, then X happened, it caused Y, and Z is the conclusion/moral lesson/what I learnt from it.
For whatever reason (and I do believe getting diagnosed with something is as simple as visiting one doctor, for some, but not for me and my weird ‘genetically abnormal’ immune system), I don’t seem to have the choice of rounding off the events of this summer with a nice binder and a neat index. I do not know the extent to which my diagnosis of post-viral fatigue syndrome following glandular fever interacted with what is looking increasingly like a diagnosis of something rare called PFAPA (a subset of Periodic Fever Syndrome that most matches both my symptoms in that it came on in adulthood and also has periods of fever/sore throat/mouth ulcers/gland pain/fatigue which is exactly what I had), but I know it was an amount. When I had full blown post-viral fatigue syndrome my blood wouldn’t clot and I couldn’t lift my arms or legs. When I had PFAPA my glands would go up every few weeks and I would appear to have the flu, from which it would take a week or two to recover. I no longer had the hallmark features of my first diagnosis – ‘payback’ the day after activity and feeling as if I had a flat battery which, if drained through walking or eating or sitting, would take days to recover from – but I had more than the hallmark immune features of PFAPA; I was more ill than someone with PFAPA might be. There were some symptoms which occurred in both illnesses for me – nosebleeds, bruises, my limbs being too weak to do much of anything, some days, a very specific feeling of having been hit on the head when I tried to stand up which I will (sadly) always remember. These severe symptoms never lasted as long – after glandular fever I could sit for one minute, then two, and so on, whereas during PFAPA I could do nothing on some days and lots only the next day – but they were there.
My immunologist’s theory is woolly: my past has made it difficult for my body to deal with the present. Even when totally well, if I got a bad virus I would get some symptoms I had never experienced before glandular fever, but in miniature. My immunologist thinks that this happened due to the widespread inflammation in my body – my body panicked, and ‘remembered’ how I felt after the previous bad virus – the big one, glandular fever. I get the impression there is scant medical evidence for this theory, but it makes sense to me. In the same way someoen who has been through a bad break-up may have too early a warning system for problems in a later relationship, my bod, while not relapsing, was just a bit feeble and less able to cope with what was actually quite a rare and stressful immune ‘event’. In the same way that there is no physiological or strict medical reason for lots of things observed – how my dad’s unpigmented patches of skin get worse when he’s stressed, how quite a lot of my hair turned grey this summer, how underneath MindReader’s eyes blushes blue, sometimes, after long days at work – there is a kind of intuitive sense to these phenomena. In the same vein, I probably would have got PFAPA at some point in my life, but I don’t think losing weight, working hard and being stressed helped. Nor do I think they caused it. One thing I have learnt this summer is that things are always a little bit more complicated than they seem.
And so I have been answering probing questions about my diagnosis/diagnoses with a glib, ‘oh, immune stuff,’ and people will say ‘will it happen again?’ and I will tell them it won’t, even though I have no idea myself. There is no reason why it should – I have one condition in remission that only ever occurred because of the fuckbastard that is glandular fever, and one that is spontaneously resolving and is usually a one-off event, despite being due to MUTANT GENETICS. That’s the science. But I am probably the last person with any kind of informed opinion on that. A massive part of me – almost all of me – is still standing at the site of the second health earthquake, looking at the destruction, and trying to go to work regularly again feeling like this is the equivalent of sweeping up miles of rubble with a tiny dustpan and brush.
In the past six months, trees have budded new leaves, bloomed, smelling of sweet summer sap, and then sucked back, the leaves curling and falling to to the ground again leaving a mere outline of a tree – an artist’s sketch – once more. And in those six months I don’t think I have really come to terms with anything that’s happened. Or at least that’s how I feel tonight, anyway. My life stopped in May when the wind was still February-cold. It began again in November and I simply took the woolly gloves out from May 2013 and began wearing them again. At work, I reference conversations that happened six months ago, like someone who’s been in a coma, and I quite honestly want to cry when reminded that I disappeared for six months. I remember the rubble and my dustpan and brush and stand and look at it for a minute. Not only the rubble of my career but also the rubble of how I am perceived. I was on a trajectory that made sense: I had been unwell for ages and then was getting gradually better and better and then everybody mostly forgot about it. And then I got ill again, probably with the same thing, people will reason (incorrectly, it seems), and I worry – I so worry – that I am the girl with the illness once more – and this time more entrenched (will she ever get well? they must think) – or the unreliable girl.
And I didn’t really think it would be possible to carry on with no guarantees and no safety net. As I listened to The National’s album in the garden drinking wine, I couldn’t imagine going back to work well, but not sure what I’d had, and if it would happen again at the next virus, or the next long week, or the next NOTHING except bad luck. I knew there would come a time when my symptoms were milder, or gone completely, and that might be the scariest part.
I have written often of how it feels not to trust your own body, and my body and mind often feel so separate now it is if they are in a (fraught) relationship where one of them has cheated, years ago, and just recently, too. My body sometimes tells me it’s fine, sometimes tells me it is very much not fine, sometimes leaves red herrings all over the place, sometimes lies. And my mind – an old, suspicious shrew – over-analyses everything my body does and looks for signs of wellness and illness too much.
But it’s funny, here I am, sitting here, after going to the pub, not too scared to do anything this evening, not too worried that my glands are playing up again and I might be about to deal with my first flare since being back at work, and feeling quite a lot like my old self, the self I was before I got that strange flu in the spring that began with a nosebleed at my desk. On work days I go to work and I try not to count the days or feel too stupidly grateful, or that it is exceptional to not feel ill all the time, or to go to a bar, or like I am on borrowed time and must do all the things now. I am trying to put one foot in front of the other, behave like the well person I know how to behave like, and hope the rest follows. And in the meantime, I’m just going to keep sweeping up this rubble until it’s clean again.