[I] have been thinking about what to talk about this week for the Define 'Normal' blog hop. I had a blog post in mind but when I sat down in front of the laptop this afternoon and then the screen started swimming in front of me. I don't get unwell very often, I feel grotty an awful lot though. It's a side effect of staying up too late, getting up too early and being surrounded by small humans leaking germs at me all the time. I don't get can't-get-up-out-of-bed sick, because I just can't. At least I can't Monday to Friday, because someone has to be vertical and vaguely compos mentis to look after Dominic.

So, with usual, convenient timing, my body has decided to remind me that I'm not quite as unbreakable as I might sometimes think. Yesterday, despite still feeling exhausted emotionally and physically from the trip up to Great Ormond Street hospital with all the kids (which I will get round to updating you about I promise), I whizzed around trying to get a bit more order to the house. Things have gone a little wonky since our only remaining carer, who comes in for a few hours a couple of days a week, got ill and I've been juggling things ever since. As I do actually have to sleep at some point, little corners have been cut here and there, and with me having been out for a whole day on Thursday, I spent yesterday permanently on fast forward trying to get a handle on reclaiming the house. I even threw entertaining two extra children for the afternoon into the mix, which was perhaps a touch cocky considering that a few hours later, I broke.

Breaking for me is my body going on strike, not a little strike that I can get through (like the shoddy state of my shoulders from lifting and carrying Dominic everywhere), but in a somebody-has-pulled-the-plug strike that found me curled in a ball, on the sofa, fast asleep a few minutes after all the children were safely in bed. I slept for 12 hours and woke up feeling like I had been run over by a truck that had then reversed and run over me a second time for good measure.

The problem is, that there is no such thing as actually being able to stop, unless there is anyone there to pick up where you left off. I'm enormously grateful that Roger got Dominic up and out of bed this morning, carrying him and his feeding pump downstairs safely. He got him dressed, helped him have a wee, cleaned his teeth and changed his bile bag before changing his feed and resetting the feeding pump. Had this been Monday morning, I would have had to crank the body up enough to safely get through the morning routine no matter what, because there isn't anyone around to do it. Elliot and Lilia can help with a lot, but they are not able to physically move Dominic anywhere, and despite being a super hero, Dominic has yet to learn how to fly. It would of course be sensible to have a back up plan, but as only myself, Roger and the carer (in a limited way) actually knows what to do with Dominic, we have to just keep risking it, and hoping that my body carries on limping along. Considering it took me 9 months to train the second carer we had, who still then needed me to help with most tasks, but had at least just got to the point where she could be left with Dominic for a short while, subsequently quit, I am reluctant to invest so much time and energy again anytime soon. It's too upsetting and unsettling for the children too.

But for now, as I can't really see straight and all the words are merging into one, I am going to try and repair myself a little with a pair of granny slippers, some lovely chocolates sent by my good friend Kate and my favourite film, Moulin Rouge. I can't wait to read this week's blog hop entries. Details of how to enter are below.

Please be sure to check out #specialsaturday on twitter and Facebook where other carers are sharing their experiences to help raise awareness.

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Why not join in?

If you would like to join in the blog hop and tell us what your normal is like click on the link below and follow the instructions to add a link to your post. Anything goes, show us a photo, a picture, dust off an old post that talks about any aspect of your normal life. Please link back to this post or duplicate the linky in your post to make sure the entries get as many views as possible. Don't forget to tell us all on twitter using #definenormal and feel free to post your link on my Facebook page once you've linked up!

 

Last week's amazing entries

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