“What’s up?” MindReader says. We’re at a pub quiz. We haven’t been able to get a table. I’m sitting on a high chair (not a highchair) and he leans against the bar, a hand casually on the back of my chair.
“Oh, I don’t know,” I say. “I need to sort myself out.”
He raises an eyebrow at me and sips his cider. “True,” he says.
“I knew it would be hard going back to – everything,” I say. “But I didn’t know it would be mentally hard.”
“Really? Remember when you went into remission from M.E and you thought you were dying of every type of cancer?”
I smile at the memory, now; scatterbrained me, googling colon cancer at 2:00am, but it wasn’t a happy time. Where once ingrained were thought loops about health worry, they had to be replaced with something, and it took a good year of therapy to undo them.
“This is different though,” I say.
“It’s always different,” MindReader says, used to my anxieties: every problem I face is different and impossible compared to those that preceded it.
I mean it though: where before I would be fearful that my body would break again and I would have spectacular amounts of time off, I don’t fear that so much now as what my body might do to me. It was horrifying, in 2008 and the few years that followed it, to be too tired to do anything (and that fact, that that happened – that tiredness like that existed – will always seem mad to me) but the past year threw up some quite frankly terrifying symptoms. None perhaps as debilitating in such a long-term way as previously, but it is quite frightening to watch your skin begin sweating all over at the same time every day (what was happening in my body, I wonder?), to swallow the pus your mouth and throat ulcers produce and to have nosebleeds that seem like they won’t end, and to be honest, if those were my only symptoms, I wouldn’t have been off work. I was just… broken. If I was already anxious about my health, I did not need that.
“I do wonder what happened, though,” I say.
MindReader passes me the answer sheet. It’s time for the music round. I write the answers down unthinkingly as the songs come on.
“I don’t think I’ve done a full day at work without taking painkillers for my ears and my wrists,” I say, remember that before 2013 I had taken about four painkillers ever. “I wonder what happened – really, in my body – in May, for it to be January and I’m still feeling it?”
MindReader shrugs. “Who knows?”
And I daresay his attitude would always be that way – and maybe that’s why he doesn’t get sick. But it’s not my attitude. There is a huge part of me that does not believe what happened to me over the summer happened at all, let alone having made up her mind whether it was the same condition, a different, autoinflammatory condition or something else. My bloods haven’t really made up their minds, either: there is nothing conclusive, save for an immunologist being pretty sure it’s PFAPA, and for the first time in my life I do understand when people say they would like a diagnosis. That didn’t used to matter to me – what mattered was prognosis – but I am learning that the history of something is as important as the future for knowing what will happen next.
So now I am not fearful that my body will really let me down in the way that it used to, but I am fearful of something else: I am fearful of the fear. I used to worry constantly about my activity and if I was doing too much or too little. I do that less now, but what I do experience is extremely unpleasant darts of fear. They are everywhere: in an unexpected (and likely meaningless) nosebleed. In five bruises on my leg that I did my best to ignore over Christmas. In the lymph node in my armpit getting huge again on New Year’s Eve. And they’re there in the memories, too: in between the two flues (or flares, or autoinflammatory responses) that led to me getting sick in the spring I had a strange few weeks where, in retrospect, I think I knew it was coming. I remember walking across that street there to get a sandwich from Pret and wondering why I was drenched in sweat. I remember going out for coffee with a friend and taking a pain killer because my throat was red raw again. I see these memories, and they’re so visceral that I think they trigger fear in me.
And it is hard to enjoy anything when you are scared. I am not scared all the time, but I am scared at least twice a week – full on frightened, as if standing on a train track, unable to move. Mostly when I have symptoms. And after a few moments – seconds – of reasoning with my Mad Brain I am fine again, and get on with my day, and no one would ever know, but it is not nice to be scared. I believe that fear is involved in every nasty thing that can happen to you.
“It’s faulty,” MindReader says, and I nod vigorously, in agreement with him here. “It will get better. In body and mind. Time – and trust.”
“I know. It already is,” I say, thinking of the terror I felt when I got achey at work in November. Already, I am increasing the days and the hours, worrying about quality not just being present, thinking of progression and the future and of learning.
And today when faced with a nosebleed – since when did I become afraid of nosebleeds? – I did get scared, I won’t deny that. But I didn’t board the train that took me to the absolute worst-case scenario: I got on and then got off again, with huge effort on what was – all in all – not an easy day (I will spare you the details of being on a train to work with a stomach bug when you are already a bit frightened of getting ill and having time off).
I constantly – constantly – think of what people must think of the Billygean who got ill. We are both well, the Billygeans, but we are different now. I feel I have failed in getting ill again, even with something different, and I wonder if people saw a dynamic, driven person and now see somebody who’s scared a lot of the time. But then I think staying put and thinking better thoughts and being brave in the face of fear is pretty much what a successful person does, and they can’t help the obstacles they have to face. And I know I won’t always be frightened, on symptom-watch and fearful of my body.
Where before my health would respond predictably (poorly) to activity, now the bad patches blow in like summer storms, sudden and frightening and meaningless. Some end quickly. Some – the past few weeks’ vertigo, which is finally fucking off – take longer. Some days my throat feels like it’s exploding again, some days I look down at my hands as I type and I see new bruises have bloomed under my skin. But nothing happens – the storms blow themselves out, I function within them – I weather them – and I am not punished for doing so by my body. We work together, my body and I. We may be changed, but we are one.