The Stuff of Our Life – 17th June 2016

The Stuff of our Life.


Two nights ago we were woken at 2am by a very distressed Little Miss H.  Being awake is not unusual for her.  Being anxious is not unusual for her.  But this time seemed different from usual.

She was very upset about burglars.  We are incredibly lucky that so far, touch wood etc we have not been burgled, so in our groggy state this seemed a random and nonsensical thing to be SO upset about.  Where had it come from?  What was this all about?

Having eventually settled her back to bed the rest of the night was relatively painless bar the 5 o’clock wake up call but again that’s not particularly unusual.

But the interruption of sleep has a knock on effect.  Of course it impacts on Little Miss H despite her being acclimatised to her own sleep requirements, which by the way do not match mine!  But worse, it impacts on my health – I’m stiffer than normal, I’m sorer than normal and I’m foggier than normal – this then impacts on everything (and therefore everyone) else for the whole day;

I had to climb the stairs (3 flights) at nursery which shouldn’t be a problem but when every joint in your feet and legs hurt, it is like climbing Mount Everest (I imagine anyway!).  Thinking on my feet during a meeting with OT, having to think about all the equipment required for Tiny Miss at school for the coming year whilst having brain fog is trickier than it sounds.  Racing around to appointments, concentrating whilst driving in the fog and rain, lifting Tiny Miss (nearly 20kgs worth of 4 year old) who is beyond exhausted and less than compliant, standing to cook tea for tired hungry children, lifting saucepans when I have no strength in my arms and the numbness in my hands means I could drop them at any minute.  It wouldn’t be the first roast or pan of boiling water dropped on my kitchen floor due to my disability.  All whilst the pain in my arm is screaming as though I was lifting a boulder the size of a car, fighting a cramping stomach because I snatched the leftover crust of their toast for my breakfast and my crohn’s is complaining that I made a duff choice,  all whilst little, sleep deprived, grumpy people are refusing to do homework, demanding things from me every 2 seconds when all I want to do is sit down and stop hurting.  It pushes my patience to its very limit.  Mr H will have to make his own supper as I won’t manage to cook anything else after dealing with the girls’ tea.

Yet I still don’t know why ‘burglars’ interrupted our night.  Coaxing information out of Little Miss H who is demand avoidant is tricky at the best of times, trying to understand her story telling is the other challenge. So coaxing the info from her whilst trying to decode what she is telling me has become an art form.  Her lack of social imagination and impaired theory of mind means that she doesn’t realise I don’t hold in my head what she does in hers.  I don’t have the memory of her day so I can’t begin to guess, but she assumes I know who she was with, what they were doing/playing and how.  Stories start half way through with ‘he’ and ‘she’, rather than names or scene setting.  In itself it’s hard work gleaning information from her but when I’m tired, sore, distracted and impatient it can be even harder but we work at it and we generally win (ish).  So using my best patience and encouragement we got to the bottom of the burglar concern.

A group of them had been playing a game in the school playground which was something to do with burglars.  That’s the extent of my knowledge but it’s enough to deduce what is worrying her.

I am thrilled that she has friends.  I am thrilled that she plays in group games.

But I do feel so sad for her that her literal brain carries this information beyond the playground and it interferes with her life.

It’s happened before, for example when she became petrified of ghosts.  The sleepless nights lasted for weeks before we got to the bottom of it.  An automatic air freshener in the toilets at school squirts its mist out periodically and the story went around that it was a ghost.  There have been other instances and it’s always something surprising and usually something that her peers wouldn’t be overly concerned by, at least not to the extent that it impacts on Little Miss H.

So teatime last night was a warning bell to me.  She ate a huge amount.  She eats when she is anxious so I was aware something was going on but she was otherwise calm.

Thinking her concern was related to her previous night’s dreams, we made plans before bedtime about what we would do if there really were burglars and dealt with her worries.  We did brilliantly, even if I say so myself.  Her anxiety was well managed and she was calm.  Bedtime was smooth.  I was proud of us.

Tired and in pain I went off to a mindfulness session which I use to help me relax and focus and which I love.

I got home exhausted, very sore and really ready to sit down.

Little Miss H walks in groggy and confused.

Me: “Hello darling, what’s up?”

LM: “I wanted to ask you a question”

Me: inwardly rolling eyes thinking ‘seriously? I haven’t even sat down yet’ but I smile, put my arm around her and repeat “OK, what’s up?”

LM: “well, I think I might have been sick”

Me: *action stations*

A huge amount of stinking, putrid vomit is on her bed, carpet, seeped into the drawers under her bed etc – so dealing with her puking, whilst cleaning up the lumpy half-digested remains of her (enormous) dinner, changing bed linen, changing duvet, cleaning the carpet, changing her nightwear all whilst every joint in my body is on fire pushes me to the brink of vomiting from the pain myself.

Mr H does his best, he races round fetching me things to help me clean up (as I can’t be running up and down the stairs) but he can’t enter the bedroom so I’m flying solo.  His sensory processing means all smells like vomit are too much for him and all personal hygiene sounds are beyond his tolerance level.  Brushing teeth noises are bad enough but puking and retching are beyond his limits.  When the puking resumes I send her to the bathroom and then with his jumper round the lower half of his face in an attempt to mask the stench, he stands there gagging, arm outstretched behind him, holding her hair out of her face, whilst she’s bent over the toilet.  He supresses his sensory challenges to cope with our daughter’s plight.    He surpasses my estimation of how much he’d be able to cope with.  He surpasses his own!

The bedroom ready for her to lie back down, I’m dizzy with pain from the exertion of bed changing and carpet cleaning.  I stumble back down stairs to sit a minute whilst Mr H takes over and settles her into bed.

My pain is not abating and a poorly child means another night with interrupted sleep.  Every cough has me on tenter hooks and when she’s sick again I can’t easily leap out of bed, so I have to wake Mr H.  (How does he manage to sleep through all the noise?!)  So another night of us all being sleep deprived.

Today my hand is swollen from the pressure on it from scrubbing the carpet.  I’m stiff, sore and burnt out.  Everything hurts.  Paperwork has now gone undone for another week as my brain can’t organise itself when I am this tired and I don’t have the headspace to stop and think.  I had both girls at home today so I couldn’t just stay in bed to rest and recover.

Mr H gets home from work tired after a busy day and sleepless night.  He not only has to cook his own dinner tonight but he has to shop for it first.

It’s an endless cycle.  Sometimes I just want to get off the merry-go-round.  ‘I’ll sit this one out’ I think to myself, but illness is not optional, parenting is ongoing and the challenges are relentless.

I’m not complaining.  I’m just explaining.  It is just the stuff of our lives.


Author: H2Au: the stuff of our life

H2Au: the stuff of our life. A personal story of our family's life with Autism, a rare chromosome disorder and auto immune disease.

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