Bug that changed my life

Sarah Wilson
Sarah Wilson

I had a stomach bug. That's all it was. A bit of an upset, when I was in Bali for a friend's wedding two years ago.

Most of us did - even the bride and groom had a couple days spent in their rooms. But when I got home . . . the pain didn't stop.

It would come and go, but then I'd have weeks where I couldn't get out of bed, and I didn't know why.

I lost weight. Foods that had never been a problem made me vomit. I stopped consuming gluten, dairy, alcohol. Nothing made a difference.

Six months later, I was finally diagnosed with an intestinal bug called Dientamoeba fragilis. It's nasty. But not as nasty as what was about to happen.

I had three courses of antibiotics over four weeks. Nothing worked. Each time, the bug came back stronger.

I was still working 50-hour weeks, much of the time from bed, with a bucket by my side.

I collapsed after not being able to keep any food or water down for two weeks.

I was taken into hospital. I knew it was bad, because they took one look at me in ED and I got hoisted into a bed.

Within minutes, I had IV lines and heart monitors and doctors leaning over me with very concerned looks on their faces.

I remember one of them saying: "Sarah, what have you been doing? A normal inflammation marker in a human body is 5. Yours is 400."

I had Clostridium difficile. C. diff lives in our intestines naturally but in larger numbers it becomes harmful.

The antibiotics had killed all my "good bacteria", allowing the C. diff to take over. If it's not caught in time, it can be fatal.

I was in hospital for about 12 days. It should have been longer, but I discharged myself after being told that I now probably had ulcerative colitis, which is an incurable auto-immune bowel disease.

Eventually this diagnosis was revoked . . . but nothing was put in its place.

I had no proper diagnosis. I had no prognosis - no-one knew when I would get better.

I had to quit work and go through the harrowing process of applying for a sickness benefit - at a time when I couldn't even get out of bed.

My work was everything to me. I felt empty, lost. Betrayed by my own immune system, which continued to flare out of control.

It's now a year since I was in hospital - almost two since I first got sick.

I've made tiny amounts of progress. I can get around on my own, mostly.

I walk with a cane, because often I'm too weak and too sore to stand up alone. My body reacts badly to a large number of foods and, even if I can manage to eat enough, my system doesn't extract or retain the nutrients.

I'm constantly undernourished and extremely tired. I've had to write this all in bits, and afterwards I'll have to go and sit down for a while.

Frustrating isn't the word for it. Frustrating doesn't begin to cover the fury I've felt, going from being a healthy 26-year-old - to being bedridden, quitting work, losing friends.

To having a visible and debilitating disability.

Being disabled is political. It's public, especially when it means that the world around you no longer fits your needs.

It's not surprising to me that I have ended up using what limited energy I have to fight for disability rights - which is what my battle with Work and Income is really about.

If someone is so sick they can't get out of bed, if they have a medical certificate that says they can't expect to work again within the next year, if their condition is made worse by stress . . . why cause them anxiety by requiring them to continually prove that they are unwell and need support?

I'm now on a Jobseeker benefit. I have a job - I'm still a writer and a consultant. I also have a certificate that says I am too ill to do it any more than a few hours a week.

I will continue to do my best to get well. There is no part of me that wants to live life like this.

I want to use my degree. I want to write fulltime, and not have to rest every few minutes because sitting at a computer is both exhausting and painful.

I want to be able to go out with my friends, instead of taking a row of pills and climbing painfully into bed at 7pm.

I want to never hear one more person tell me I "don't look sick".

It's not reassuring. It's not a compliment. It's saying, "I don't believe you."

This can happen to anyone. Trust me.

It was just a stomach bug.