Chemo-Shots and School Runs

This is another of those "How am I?" posts. The thing is I'm not sure I can even tell any more.

This morning, as we were deep in the "Where's-my-book-bag/I-don't-like-eggs/Will-you-PLEASE-get-dressed zone, there was a knock at the door. It was the nice delivery man who brings my chemo-shots. Not the milkman, or the lovely Mum who takes my 6yr old to school for me, the chemo guy.

With my dressing gown covered in weetabix, I signed the docket, put the syringes in the special fridge and went back to bagging up party-rings for today's end of school party.

Last week, someone innocently commented that I must have to be very careful what I eat. "Oh, not really." I replied breezily. That night I couldn't stop chuckling. There are hundreds of things I can't eat. There are times of the day I can't eat. I never eat before an important meeting or appointment in case it means I can't get off the loo to leave the house. I can eat some things once, but know I mustn't push my luck. Some days I can't eat at all. Others, I have to stuff myself silly to get the calories in while the going is good.

This mad nutritional juggling has been part of my life for so long, I've forgotten I even do it. It just is.

Since May, I've had a nasty crohn's flare that sent me running to the doctor for opiates and advice. The crohn's flare meant I had to put my dose of steroids up to sky-high levels, screwing with my immune system. I got a virus. A terrible, flu-like, debilitating virus that lasted for two weeks. Then the virus turned into a chest infection that I couldn't shake off. Through all of this, my rib has popped out of place three times, causing excruciating pain.

If you'd asked me, I'd have said I was fine.

Because I'm not critical. I'm not waiting for surgery, not writhing in pain every moment of every day and night. I'm not vomiting every sip of water or bite of toast I take.

Last week, my 3 year old was struggling with the virus I'd just shaken off. Like any harassed Mum, the world had to stop for endless cuddles and Calpol. There are still school runs for the eldest, dinners to cook, shopping to arrange, appointments to keep and relationships to nurture. But underneath it all, there is always the crohn's.

If I let any of the balls fall, the result is not just a slightly chaotic housework schedule! If I do too much or forget to eat the right food, or can't find time to rest, we all suffer. Once the immediate crises pass, the adrenaline that has to carry me through melts away and slams me into the ground.

I spent a miserable hour on the phone to a friend wondering why I felt so tired. What could be wrong? Why wasn't I recovering like normal? Why did I feel like I just couldn't manage? Why did I want to cry all the time? Was I anaemic? Were my bloods showing disease? Was there yet another sinister underlying cause waiting to rise up and bite me?

That particular day, I'd had to carry 3 yr old home from 6 yr old's school. He just couldn't walk another step and no matter how poorly a Mum might be, no matter how exhausted or weak, you follow the instinct of a million years and pick them up. When I mentioned it to bessie-buddy, she started to laugh.

"So, let me get this straight, hot on the heels of two months of illness, you carry a 15 kg toddler through the park, past the flats, across the road and home? When you got home, you washed up, did dinner, and now you're asking me why you might feel a bit under the weather?"

We laughed, relieved to find the cause of my malaise, but actually, it's not all that funny is it?

An illness like crohn's is a full time job. If I am "fit for work" then I'm sorry to tell the DWP that I already have a full time job and there just isn't time for anything else. I work on staying alive. I've got so good at it, I've largely forgotten I do it, but that IS what I do. Every day. And when I don't I get sick. Horribly, dangerously sick.