Friday, 22 July 2011

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.


  1. Pefect post. I haven't had a day off since I was three years old. I have no idea what it's like to wake up in the morning and think "what shall I do today?" because there is always *something* to be recovered from and analysed. Thank you for articulating what I think a lot of us experience, Sue. I wish I had something to say that could make it better, but I can't think of anything.

  2. [QUOTE]Jan said...

    Pefect post. I haven't had a day off since I was three years old. I have no idea what it's like to wake up in the morning and think "what shall I do today?" because there is always *something* to be recovered from and analysed. Thank you for articulating what I think a lot of us experience, Sue. I wish I had something to say that could make it better, but I can't think of anything.[/QUOTE]

    Same here Jan

  3. I am so glad that I stumbled across this blog, I've been suffering from crohn's for the past 4 years, so far it has shut down my immune system, turned off my bone marrow (mind you there is quite a back story to that tale, one hint i will give is Doctors!) shut down my kidneys and nearly killed me....twice but I like you just shrug my shoulders and try to make the best of a bad situation.

    My friends phone me and ask how are you and even though you feel like death warmed up with a thick layer of mold on top, the automatic answer of I'm fine pops out of your mouth.

    Ah and the doctors mine are bloody useless they think of crohns as a slight severe case of IBS and no matter the explaining you try to do they are right and you are wrong. The other day one looked at me ad said get a job it will help, er how will it help? who will hire a lady who may or may not be into work due to the fact she either has caught some bug that has knocked her flat on her back or she just cannot get off the toilet because the crohn's has decided to have fun. I honestly imagine I'd keep said job for about a week.

    I just realized I'm ranting I apolgise.

    salutations from

    jayne *wanders off*

  4. Don't apologise Jayne or wander off. I love it when people "discover" my blog for the first time and find it reflects their lives too.

    I get a bit political about it all, but hey, sometimes you have to or nothing will ever change.

  5. I've come upon this having been away from the blogs for a few days - or longer I think - due to ill health.
    Although what you go through is so much worse than what I go through, I really identify with the experience that as mothers we do what we do regardless of our health because that's what mothers do. My worst times have been those times when I have been unable to do the 'Mum' bit, but unfortunately when they get to be teenagers and there are other family problems screwing them up, the result is more likely to be a visit to the police station or youth court than anything else! I recall one instance when I only started to get proper support from my son's social worker when I was too ill to attend the police station as his 'appropriate adult'; his friend's mother attended at the police officer's request, left the police station at 1am and the next day phoned the social worker's manager to give her a piece of her mind! From that day on, the social worker became extremely supportive and eventually we received part funding for a specialist boarding placement which turned my son's life around - literally.
    Tomorrow I'm hoping to persuade my GP to seek expert advice on my breathing difficulties, as our local respiratory and rheumatology clinics have been completely useless and I'm really not convinced anyone is taking my difficulties seriously or, therefore, helping us find the best way to manage them. I'm taking a good friend to make sure I don't get fobbed off or forget to say something vital!
    Although ankylosing spondylitis is very different from Crohn's, I can identify with some of what you share Sue. I just hope you find yourself going through a better patch very soon xx

  6. You're clearly not too ill to update your blog every day.