This is the first of a series of journal entries based on what it is and has been like to live with a long-term illness. Everything that follows here is 100 % autobiographical.
15 Nov 2013
I can’t remember what it’s like to feel healthy. It’s easy to identify the point where I noticed how dangerously sick I had become, but I still can’t recognise where the decline started.
My energy was so low today that after just two hours wandering around town, I had to spend the rest of the day in bed. Days like this make me feel like I’m just not able for life anymore. For someone in her mid-twenties to live like this is so wrong it feels like it’s going against nature. Like when I woke up in intensive care. I was the younger than the grandchildren of the other patients in the ward and it just felt so unnatural and alien for me to be in there that my brain shut down and refused to process it.
For at least the last year, I haven’t liked my body. On bad days, I hate it. On bad days I can’t even sleep without a t-shirt to cover up the tummy that I didn’t have two years ago. This isn’t my body. I refuse to accept it. It used to be toned, lighter, and a lot fitter. It was never and never will be perfect but I was comfortable in it. It suited me. I don’t feel like that anymore. There isn’t a single part of it that I can look at without getting depressed. Even my face feels overweight compared to what it used to be. The dietician told me I’d be lucky to lose any weight in the next six months now that the doctor’s increased my insulin so much. I can’t deal with the fact that the dieting and exercise I’ve put my career on hold for won’t at least give me back a body I can feel at home in.
I can’t see myself going back to Fire. For a start, even all dolled up for Christmas I felt that Fire was far too posh, not to mention pricy, for me. I didn’t feel guilty about throwing up on the door handle on the way out to the toilet at the time, because their food was so fussy and rich I thought the restaurant had given me food poisoning. I’m absolutely mortified even remembering it though. I remember sitting at the table waiting for the bill to arrive and feeling utterly convinced that someone from the restaurant would come over and, in front of all my colleagues, reveal that I was responsible for the vomit some unfortunate waitress had to clean off the door and forcibly throw me out of the building. I think if I went back, even in ten years’ time, that remembered incident would make me feel so awkward and paranoid I couldn’t possibly enjoy myself.
It’s so horrible being sick in public. People look at you, or you imagine they do, with contempt rather than compassion. They assume it’s because you’re drunk, or high on drugs. On the few occasions it’s happened to me I’ve always really wanted to say “Look, it’s not my fault, ok?” Later that night I thought I was feeling better – you know how you do after you’ve been sick – so I went on to 4 Dame Lane, and while I was there I publically, spectacularly, and repeatedly threw up. I still can’t figure out why it was so important for me, at the time, to impress upon the stony-faced toilet attendant in 4 Dame Lane that I was sick rather than drunk. It wasn’t like she was a significant person in my life. And in light of what happened later what a stranger thought just seems so unimportant.
I don’t remember much besides the terror when I realised I was sick in a way I never had been before. I remember having convulsions on the bathroom floor because I was too weak to make it to my bed next door. I remember how quiet it was when I got to hospital, how everything was soothing, calm, and reassuring. I thought I’d be alright soon, but when the nurse tested my blood, the calm was chased out by panic. Alarms were activated and I found myself the centre of attention in the one place you’d rather be ignored. I had so many medics rushing around me that they all coalesced into one terrifying, white-coated blur. I only remember little pieces of it. Mostly I remember the feeling of helplessness, especially when I realised that the doctors were fighting to keep me alive. I still have that feeling now.
I found one of the Scabs reviews this week. It’s hard to believe I ever had the energy or the confidence to write and stage a professional piece of theatre, and harder to believe it was just months ago. I feel like a shadow of the woman who worked so hard and lived so much this year. The whole time I thought I was doing so well, I was a ticking time-bomb. Now I’m living permanently on the brink of a coma. I didn’t spend much of the last year feeling sick and that’s what frightens me. Both hospitalisations were life-threatening and both seemed to come out of the blue. I haven’t felt sick but it’s been a long time since I felt healthy.
Now that I’m at a stage where everything’s suspended while I try to get back to health, a lot of the past year’s proudest achievements are tinged with sadness. They were foundations I’m now too weak to build on. I presented results at my first conference and started writing first author papers to submit to medical journals, but my PhD broke my health and my grant has been put on hold indefinitely. Scabs‘ sold-out, national-review success completely blew me away at the time. I want to use that to push the next project. I haven’t given up on the hope of bringing Love? to life in the spring, but how the hell can I produce and direct a play when I can’t even manage two hours lunch and shopping without having to spend the day in bed? Life is in limbo. I keep reminding myself that this won’t last forever, but I hate being in limbo.