When people ask, I have two default positions,
"Not too bad" and "Just not right"
"Not too bad" is my situation normal - diarrhoea, tiredness, sometimes pain, a sprinkle of malnutrition and a pinch of nausea. The hardest thing for people to understand who aren't ill, is that I really don't notice any more. It doesn't hurt less, I don't feel less sick, I just don't notice.
On a bad pain day, I don't realise until I find myself crying because I've run out of milk or when my kids spill a drink. I'm "fine"
When I'm not fine, I'm "just not right". I find it hard to be more specific than that. After all, I already feel ill, I already feel sick, I already get pain. "Just not right" is something on top of that. This time it's been an extra dollop of exhaustion and a string of chest infections. I didn't think I felt too bad, but it was harder and harder to make it to school to collect the boys, harder to get round a supermarket. The exhaustion that I always feel became an insurmountable mountain.
After weeks of tests here in Addenbrookes, I had a procedure yesterday (colonoscopy) They had found a suspected narrowing in my bowel and thought that if they opened that out, the other symptoms might just fade away.
If you're squeamish, look away, but a colonoscopy involves shoving a tube up your bottom and weaving it up and up and up until it get's to the right place. It's very unpleasant.
Yesterday afternoon, procedure completed, a rather nervous looking doctor appeared at my bedside. She had a look of awkward pity on her face and long term patients know that if a Dr looks at you with pity, it's not going to be good news. It takes a lot to invoke pity in a doctor.
It turns out that, yet again, I was riddled with crohn's. My poor consultant had opened up THREE narrowings, but when he got to the FOURTH it was too tightly closed and he had to give up. In between the narrow bits was active disease, something I hadn't thought they would find at all. Basically, I'm a checker-board of obstruction, inflammation, obstruction, inflammation...... Again.
But there's more. The gamut of tests and tubes have found that I also have bronchiectasis - a lung disease that makes you more prone to chest infections. Exhaustion is one of the main symptoms.
Erm, and something else. They found I have Addison's disease too. My adrenal glands have packed up, leaving me low on adrenaline. The clue is in the name. Exhaustion is one of the main symptoms. It's getting a bit clearer to see why I couldn't make it round Sainsbury's eh?
If I stay in here much longer, I'll have a disease for every day of the week.
Ah well, sometime soon Mr Gaunt-Looking-Surgeon (or if I get lucky, Mr Genius) will re-appear and set a date to unzip me (again) hoover me out (again) and patch me up. (again)
They'll be setting up a central line feed into my artery, so I don't waste entirely away before surgery. I'll just keep sitting here with my West Wing DVDs and toffee bon-bons trying not to think about anything very much.
I miss my babies, my Dave and my lovely, sunny flat. I miss my elephantine beanbag and tea that is actually hot. I miss chilled wine and home cooked meals.
Most of all though, I think I miss the denial.