I'm ill. Three little letters. Ill. A word so short, you might miss it if I say it quickly. A word so subjective, you will not know what I mean.
Which one did you think of? What does ill mean to you?
I start from a base of Already-pretty-damn-ill. But that's my "fine." I run to the loo, wearing the hall carpet down as I go. 5 times, 8 times, 12 times a day or more. It makes me weak. Dizzy. Exhausted. Sometimes, after lunch, the need to just sleep is so strong I try closing first one eye, then the next in shifts. I shake as I make my toddler his lunch. Stumble as I carry it in to the lounge. Stars dance and float in the corners of my eyes as I bend to open the washing machine or haul myself wearily from the car.
Occasionally and embarrassingly, I shout out in pain. I might be in a restaurant or a cinema. My vocal chords would appear to get no advance warning. Otherwise I forget the pain is there. A dull backdrop to school nativity plays and boring committee meetings.
But when does "endurance" become "normal"? Oh...... years ago. Sometimes, I spend an hour or so, my face perplexed, wondering just why I've had such a bad day. Friends, with the luxury of objectivity ask me gently if I was up in the night. I nod. "When did you last eat - and keep it down?" I think.....
And the treatments. A parade of pointless poisons. In my case anyway. One made me vomit all day, every day. Another gave me headaches so bad, my consultant feared they were the precursor to a brain tumour. Steroids gave me osteoporosis. Innocent little white drops, dissolving my bones. A calcium sacrifice to the Great Intestines, because nothing matters more than keeping me alive. Bowels rule everything.
And the last option. The real red-button treatment. Sterile little packs, delivered to my door. To be refrigerated. Sharp little needles full of stingy, cold, syrup that I jab into my belly every fortnight. Like a little bit of AIDS. They weaken me. My pesky little T Cells that are supposed to defend me from germs just won't take it easy you see. In my body, they never switch off, turning on me, attacking me, gnawing away at me until something bursts or fills with poison.
The pre-filled syringes make these T Cells lazy, encourage them to take a day or two off. Trouble is, all the other germs get the same memo. A cold, a flu, a chest infection, a virus. Like teenagers who's parent's have gone away for the weekend, the message spreads - Party! Sue's immune system, don't be late!
Which is worse? The constant crohn's or the constant infections? Does it really matter? The results are the same. Dave still has to respond to my SOS when I can't remember my own name through the fever and can't physically get to the kitchen to make the boys their lunch. He still has to risk his own job and rush home to care for us all.
I'm still sitting here, all alone, propped up on pillows, too weak to even have a bath. I'm still looking at the same bedroom walls, too sick to get up and draw the curtains, to let a little light flood in. I'm hungry and a bit cold, but there's still no-one who can wave a magic wand, drop their own lives and come and make me a cup of tea or a hot water bottle.
I'm still sad. I still feel defeated and a bit useless.
I have to tell you today, because tomorrow, or whenever this latest viral-intruder stops thrashing me in his jaws, I will report breezily that I'm "not too bad". I'll look a little thinner, my eyes a little darker.
But today, today I can't even muster denial. Today I know that it won't be long before the bedroom-days get more frequent than the school-run days. Today I realise that my ever constant family and friends are already planning hospital contingencies and compassionate leave. Today I wonder.... just for a flicker of a second..... how long my frail, ravaged little body can stay on the right side of "miracle" Tomorrow, I will believe the answer is forever.
Today, I can't pretend that my 7 yr old is just going on a "play date" after school. No, today, my mind tells me oh so clearly that I'm using up another favour, calling on another chunk of goodwill. Today, I can't pretend that my toddler going to nursery all day is just an "adventure".
No, today I can see that I'm losing the battle. Again.
And of all the ironies, of all the thoughts I am left here with, alone with too much time, I remember that this is a battle the most privileged, the most powerful don't even believe exists. It is a battle politicians believe can be overcome. If I just tried a little harder, dealt with my destructive "illness behaviour," I too, could be a fully paid up, financially productive member of their version of society.
Now isn't that bizarre? And even a little bit sinister?