Friday 22 October 2010

A Wasted Week

Thank God it's Friday.

I've spent all week in bed, alternately vomiting, writhing in pain or peering back at the world through an opiate haze. Friends have taken my 6 year old to school, other friends have picked him up for me. His homework hasn't been done for two weeks. My Mum has spent all but one day at my house looking after me and my toddler (not to mention my 88 year old Dad who's almost totally immobile now.) My husband has jigged his work around to breaking point - yesterday he just couldn't come home early and I had to cook spaghetti bolognese while running to the loo every ten minutes or so to be sick. In the end I gave up and gave myself an injection (opiates and anti-sickness drugs) - something I hate to do when I'm alone with one of the boys.

A chronic illness is like a staircase that you just keep climbing up and down forever.

After surgery, all cleaned out and zipped back up, I thrive. I put on weight, I notice the chasm where the pain used to be almost every waking moment. I have a little more energy, can eat with a little less caution, my mood lifts, oh so slowly and I enjoy the clear fresh mind of an opiate free day.

One by one though, I start to step back down the staircase - one step at a time, each step a defeat.

A niggle of pain here and there. Step
A bit queasy after Sunday lunch. Step
A few pound lighter. Step
Pain all day. Step
Can't eat. Step
Vomiting. Step
Weight falls again.
Pain every day. Step
Can't get out of bed. Step

Yesterday, I took one of the steps I always find the saddest in the whole cycle. I had to switch from having most of my medications orally to having them by injection. My bowel is just too sulky at this stage to absorb enough for the meds to have any effect.

Eau de Junkie starts to waft through our house. Packets of needles and syringes, hidden on high shelves out of the way of the kids. Hiding in the bathroom so they don't see the needles or the blood. Sore bruised legs, stiff and inflamed from constant punctures, trying to read a story, my mind addled with cotton-wool highs, trying not to read the same sentence more than once.

My two year old endlessly comes to the side of my bed, pushes his little face right up to mine, his enormous blue eyes wide "R'you fine Mummy?" He asks, over and over, willing it to be true. Last time Mummy spent too much time in bed, she disappeared for five weeks and he didn't see her. "I'm fine sweetheart" I reply, with much more confidence than I feel. Happy, he skips away, only to come back a few minutes later, his face all concern, "R'you fine Mummy?

The 6 year old plays up. He knows more of what is to come. He alternates wildly between taking on Daddy's role when he's out at work - tucking me up in blankets, getting me drinks, looking after his baby brother and pushing his luck - answering back, ignoring me - desperately trying to irritate me out of my troubles.

Despite all of this, you might just see me, pushing a trolley around the supermarket or taking the kids to the park. There might be days when I put on some make-up, push my shoulders back and look quite normal. I park with my disabled badge and see the disapproving looks of the local retirement-squad.

I could be your neighbour, or your work colleague or your teacher.

And you might never know.


  1. Just know that more people than you realise are with you everytime you take a step up or down! xxx

  2. My heart goes out to you and the many in similar situations, I'm so sorry we failed to stop the coalition of evil who like to put scrounger labels on anyone less fortunate than themselves. I hope you can take a little comfort knowing that there are some of us out here who understand and will support you whenever we can.

  3. Great to know guys, thanks for commenting.

  4. So sorry for all that this rubbish illness entails .... and your boys sound lovely.... Just the right amount of concern and cheekiness.

    It is not fair that you have to deal with people's unthinking predjudices as well.... not to mention scares from Gideon's CSR!

  5. Hey Sue,

    Your week was not wasted.

    In the last week your blog has taught me more about the problems confronting those with extra health needs than I had previously known. In addition, the media is now picking up on these types of stories. Only today an MS sufferer confronted Clegg. The slow burn effect, that hard working blogs like your own does, contributes greatly to the cause of people in similar predicament to yourslef but who are les able/confident to speak out!

  6. I think back to all those months when I read your contributions elsewhere, not having any notion of what was going on. I suspect many of us do not realise what may be happening behind another front door.
    I confess I look daggers at everyone who parks in mother and baby or disabled, but at least I am not discriminate - I mistrust them all!

  7. Brilliant post Sue.
    My son is officially disabled. He had a serious brain haemorrhage when he was born and had to
    have a shunt fitted. We were told at the time there would be 'consequences' which could be
    anything from not being able to walk to something minor. Well, he's 3 now and we can't see any symptoms. So is he well or is he disabled? Does the fact that he has a shunt which will need to be changed regularly and which keeps him alive mean he's disabled? Just as you say in your post. After you have surgery or you feel well enough to go shopping does this mean you're no longer sick?
    The whole concept of 'sick' or 'disabled' and 'well' is not as simple as people think.

  8. Your condition sounds pretty miserable. Here's a few ideas.

    I expect you've investigated solutions, but yoghurt, garlic and cannabis are all good, though not necessarily together :) Glutens and grains are bad.

    Anyway, the Coalition's tightening up on benefits is designed to catch able-bodied people who can't be bothered to work, rather than yourself.

    My wife doesn't work, but we don't claim benefits because it just seems the natural order of things to us.

    You could go self-employed, and make money from adverts on this blog. That way you wouldn't need benefits.

  9. If it's any comfort to you, through you work on this blog you have probably achieved a lot more in a 'wasted week' than most people achieve in a good year.

  10. Hi guys. I did try to reply yesterday, but after typing a very long response agonisingly slowly, I lost the lot. Grrrr.

    Eoin made a good point. The blog really has been a terrific success, thousands of visits, taken on by some of the biggest blogs on the net and some very prominent politicians. Most importantly, I've had lots of tremendous comments from people like me and that made it all worthwhile. Eoin mentions the MS sufferer and I've noticed, though it could be coincidence, that the word "scrounger" is cropping up all over the place as a criticism of the coalition.

    Blackburne - I've had crohn's for 27 years, I've tried everything from emu oil (?) to faith healing. I didn't claim for many years, but it became a necessity when my husband had to take a lower paying job to be more flexible in his care abilities. As for going self employed, my problem is reliability, running your own business often requires the person to be even more hard working and reliable than being employed. Still, your comment about advertising might work out. You could all promise to click on 10 ads a day for me! I'd be rich, lol.

  11. I'd click on some ads for you. I'm not exactly sure how it works. I thought I'd seen somewhere that screen views counted, but maybe not so much as clicks? I'm sure someone could enlighten you.
    Anyway, I'm sure I wouldn't be the only one who'd help.

  12. Thanks Pete, I wonder if they'd be suspicious, lol

  13. Pete, just in case you ever come back to this, how do you know these things about crohn's?
    I decided too that garlic, yoghurt and cannabis would make a very nice raita!