No one knows how I caught it. I could have walked by somebody while they were coughing. I could have got it from damp in the walls. It's impossible to tell.
For eight months, they kept testing me. My motor skills went, my memory became patchy. I'm still getting flashbacks, five years later. My face was gaunt and my skin had gone grey. I was using a walking stick to get around.
There were moments when I felt that I was looking down on my body from the ceiling. Just looking, convincing myself to choose life.
Tuberculosis – TB – isn't something you associate with life in England. It's not like getting the flu. When you hear of it you think of Victorian times, of the Black Death. Before I had it, I couldn't really have told you anything about it.
The first sign of trouble came at work. I'm a fitness trainer and complementary therapist, and I noticed how exhausted I felt. Initially I assumed my fitness wasn't up to scratch and simply pushed myself harder. Then one day, when I was cycling, I realised I didn't have the strength to continue. I decided to go to the doctor.
Maybe I was burned out, I thought – in need of a holiday, or anaemic. My GP told me I had the flu – though it didn't feel like it. A week or so later I returned, feeling no better. Again, he said it was the flu.
On my third visit, he was away and I was given a different doctor. From his surgery, I was sent straight to hospital. They took some X-rays before referring me to another hospital – Guy's in Southwark. They were testing for everything: cancer, TB, Aids. This was the first round of tests.
When the tests came back, the doctors still didn't know what was wrong. It was at this stage that I started to wonder whether I was making it all up. Perhaps, I thought, there isn't anything wrong at all. I was getting weaker, but there was nothing to indicate what it could be. I went into denial and tried to carry on.
Increasingly, it became impossible to function. I wouldn't go to bed. I would get in from work and pass out in my armchair, waking in the morning with a drink poured down myself. In the night, it would feel like I had left my body. I cannot tell you if I ate dinner in those months; if I ever did, I don't remember it. I was very skinny; people began asking if I had Aids. Still, the doctors couldn't find an answer. I was passing blood and my stools were black from internal bleeding.
I would try to go to work but it became more difficult. Several times I passed out and awoke not knowing where I was. I still find it fascinating that other people at work rarely mentioned it. I'm freelance and people in my class knew I was sick, but I felt like my employers never really took it seriously.
I had a nurse assigned to me; she came round twice a week. I always said I was fine but there were days when I couldn't remember how to walk. It took me an hour and a half to get to a friend's place, which was about 1km from mine.
It became very isolating. The fact that the doctors hadn't come back with a diagnosis made things more difficult. People would ask what was wrong. What could I say? I'm not close to my family, and so there wasn't a network of people who could offer advice. I did have some people: friends who were willing to do my shopping, people to voice concern. They would tell me everything was going to be all right, that it would all work out. But that's not practical. It doesn't put your mind at rest. It doesn't help you look in the mirror when you can't face yourself, it doesn't help you get back your motor skills and it doesn't make you stop wondering whether, if you died that day, you had lived your life properly.
Then, eight months in, there was a breakthrough. The doctors had concluded that I must have lymphatic cancer and I was admitted to hospital. My first reaction was a strange one. I thought: "I'm not having chemotherapy or anything like that." I felt that I had lived my life and perhaps it was my time to go. They were going to cut open my chest and take out one of my lymph nodes so they could see how far it had spread. Of course, after they had operated they realised it wasn't cancer after all. I had TB within my lymph nodes – a new strain of TB. The doctor told me that I'd made history, and then – out of the blue – began to celebrate. "I knew you were too young to die," he said. It was the first time I realised how close I was to the end.
One the one hand, I felt very confident. On the other, there was no cure. That was an eye-opener because TB is supposed to be treatable. The doctors' solution was to give me 22 antibiotics a day. In other words, to throw everything plus the kitchen sink at it. They had me on a five-year plan where we started off with 22 per day and then, after a year or so, cut down to 11.
But within eight months, I was off the antibiotics altogether. I went back into the gym. I started meditation. I ate healthily.
The doctors said they couldn't believe it: I was well again. It was a huge relief. I started to relax in my mind, and allowed myself to remember what I'd been through.
A lot has changed since then. I have changed. Just before my illness, I had joined a meditation group and, as part of that, a discussion group. We would speak about problems and how we could turn them around. Throughout my illness, I never missed a session. If I hadn't been doing that, I probably would have gone back to that illness. The counselling has kept me in balance.
I'm still teaching and training. I'm still doing the things that I was doing before. And I've been doing a lot more for TB Alert, too. Going to work has become more important – but at the same time, it's not about the money. Everything in my life has become about the amount of joy that I feel each day, about trying to have as much fun as I can. Unhappiness is like bondage.
One of the biggest emotions for me now is relief that my TB was in my lymph nodes. That is what made it non-contagious, and that's a saving grace for anyone who was around me for those eight months.
Sometimes I think to myself: "Did it really happen?" Nobody can tell me how I got it, nobody can tell me how it went and nobody can tell me if it'll come back again. Subconsciously, it sits in my mind but I don't know what to do with it. I don't know what to do with the little information I have. I certainly can't spend every day wondering if it will return. I just need to focus on living.
Interview by Alice-Azania Jarvis
For more information about TB in the UK, visit www.thetruthabouttb.org
The truth about TB
* Tuberculosis, known as TB, is commonly known as a lung disease, but it can affect any part of the body. Bacteria are inhaled and can travel in the blood to other organs.
* So long as it is diagnosed quickly, TB – in any form – should be curable.
* Common symptoms include: a cough lasting for more than three weeks, unexplained weight loss, fever, night sweats, fatigue and a loss of appetite.
* Tuberculosis is less infectious than a cold but people who are in close and frequent contact with a patient are vulnerable. Infection happens when airborne droplets – usually emitted by coughing – are inhaled.
* It is extremely rare for children with TB to be infectious.
* There is a vaccine against TB called the BCG, but it does not prevent all forms of the disease and – in the UK – is offered only to those at particular risk of the illness.Reuse content