From the beginning?

I’m a bit incoherent due to pain, pain medication, and exhaustion, but please bear with me.

I’ve had to tell my story a lot over the past few months, what with friends, family, doctors, ED, hospital wardens, nurses, specialists, and counsellors. But I think I need to tell it one more time, from the beginning.

Tonight, as I sat on the couch during a small power cut, feeling utterly terrible and trying to keep it together, I realised that I have now been sick for over a year. 13 months. 13 months of fighting. 13 months and exhaustion, nausea, and pain.

I first got sick when I went to Bali for a friend’s wedding in June/July last year. I spent the last two days of my time there stuck in my hotel room, throwing up, feverish, terrified that I wouldn’t be able to make my flight home.

When I got back, I was sick for the following two weeks. Then I got well enough to go back to work. But I never got truly well. Every couple of weeks, I had periods of debilitating nausea. I had to adjust what I ate. I started losing weight. I kept hoping it was psychosomatic, linked somehow to my anxiety and therefore controllable. I visited my GP and he did tests that found nothing.

In December, I changed GPs, and on January 4th this year, I was diagnosed with dientamoeba fragilis, which is a pretty horrific parasite that was living in my intestines. I was given antibiotics to treat this. Three days after finishing the antibiotics, I was catatonic, throwing up, feverish. The antibiotics hadn’t worked, and so the parasite had been able to come back twice as strong, having grown immune.

The doctor tried two other courses at different antibiotics. By this time it was February. I was working 50 hour weeks still, barely eating, and often throwing up when not at work.

Finally, in the first week of March, my doctor did a different test, for an infection called clostridium difficile. C-Diff infections are caused by antibiotics. They happen when antibiotics kill all the “good bacteria” that usually live in your intestines, allowing the “bad bacteria” to take over. My doctor knew, in January, when I took my first course of antibiotics, that this infection was a possibility. I was never told about it. He didn’t test for it until the first week of March, when I had been sick for almost two months.

I found out I had C-Diff two days before I went into hospital. That day, I went to stay with my father. I remember only vague impressions. Dad’s worried face, throwing up over and over, trying to drink water, realising it had been a week since I last ate. Realising that I couldn’t fight this on my own anymore, and allowing myself to be taken into hospital.

I remember being scared in ED because the moment the admissions nurse saw me, she took me through to a bed. I’d expected to be in the waiting room for hours.

I was given IV fluids, morphine, and anti-nausea medication, and for the first time in weeks I felt no pain. The doctors said I wouldn’t be going home for a while, and I was scared, but my father stayed with me.

I was in hospital for 12 days.

I want to write more about this but I feel too nauseous right now. I’m quite scared because the last few days I’ve felt very ill and haven’t been able to eat much. My doctor has done tests for recurring intestinal infections. I don’t want to go back to hospital.

It’s now been almost 6 months since I came home. And I feel hardly better than when I went in. Sometimes it’s hard to stay positive.