Cheetahs In My Shoes

living with the imaginary menagerie and all that it entails

Waking Up Bendy

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I distinctly remember watching ‘Open All Hours’ with my parents of an evening – Ronnie Barker as Arkwright standing outside his shop saying “it’s been a funny old day…” as he reflected on the comings and goings of his customers, Nurse Gladys Emmanuel and that amazing trumpet theme tune started (oh how I wanted to play that one day…)

I’d say that this week has been a “funny old week” – in a mix of funny ha ha and a large dose of funny peculiar.  I’ve already written that we really enjoyed our break in Devon and then enjoyed a family day on the Sunday before beginning the back to school preparations.  The Cheetah Keeper had treated us to some fairly monstrous behaviour whilst on holiday – due to extreme tiredness and the inability to find the ‘off’ button.  He woke up on Monday morning in a similar mood.  It didn’t go well.

Our morning routine when I’m working is such that we need to be at school at 7.50am ready for breakfast club.  Breakfast club is a wondrous thing – for £2.50/child they get a hot breakfast that I could never offer at home.  The Cheetah Keeper did not want to go.  Admittedly it hadn’t helped that he’d had a nosebleed at 5.50am and hadn’t gone back to sleep afterwards so he was tired, hungry and generally out of sorts.  I manhandled him into the car, shoved his wellies on and near enough dragged him into breakfast club.  Whereby a complete personality transplant occurred and he spent the rest of the day being his cute and engaging self.  Pah.

Once home it went downhill fairly rapidly again and suffice to say he was in bed, asleep by 6.15pm and he slept for 13 hours straight – but I had managed to sustain a few bruises in the process.

The Cheetah Keeper’s sister was supposed to be off on her school trip to the seaside on Tuesday – that didn’t happen due to the weather (hopefully they’re going on the 27th) and, somewhat unpredicted, I woke up bendy.  Ehlers Danlos Syndrome is a strange one, the smallest changes can set off what seems to be a massive reaction.   I’ve made the decision to reduce some of my medication – slowly and in a controlled manner of course, and I suspect the change of dose triggered a hormone surge of some sort and everything went lax.  Joy.  Add to that my hayfever (which is always over by the end of May – except this year) kicking in and I’m a partial dislocating, swollen, aching, stretchy skinned, snotty, wheezy specimen of an oh so professional working mother.

We had no medical appointments at all during the week.  It’s at this point that I start frantically checking through diaries, notes and letters to make sure I haven’t missed anything.  At the moment, due to the Doctors going on strike on Thursday, we’ve only got one appointment next week as well.  It’s on the strike day – I’m very tempted to ring up and check…

I went back to volunteering at Brownies on Thursday – I am, once again, Tawny Owl.  I was expecting it to be a bit like getting back into an old pair of slippers – familiar, easy but not particularly exciting or fun.  How wrong was I?!  I loved it.  That, as they say, was not in the plan.  I’m leading next week too.  It reminded me how much I enjoy working with this age group and they, I suspect, all think I’m barking mad so we’ll be getting on well.

Our highlight of the week was the Cheetah Keeper’s sister being chosen to go to Hatfield House to see the Queen as part of the Diamond Jubilee celebrations.  The 60 children from school were chosen for their effort, attitude and contribution to school life over the last year.  Proud Mummy moment.  For a girl who was described as ‘needy’, ‘struggling’ and ‘failing to make progress’ [in her writing] the week before Easter I think this just goes to prove that those descriptions aren’t necessarily correct.

They were so excited about their day out and they weren’t disappointed as the Queen came over to speak to her school’s contingent.  Being taller than pretty much everyone else, the Cheetah Keeper’s sister was in the 2nd row so didn’t get to shake hands but still reports that she was about a 1m away from the Queen – who looked a bit like a grape wearing purple and was very, very short.  They were still bouncing off the ceiling the next day.  Very Proud Mummy moment.

I’ve found myself easily distracted all week.  Bits of me hurt.  The realisation that the injection I had in my wrist in May clearly hasn’t worked – despite the fact that I’ve stuck my head in the sand as far as possible in the hope that it will do something, it hurts, a lot.  And is partially dislocating – as is my thumb and my jaw when I yawn.  I know the medication changes make it harder to concentrate – but so does watching the live feed of the Queen arriving at Hatfield Park!    I’ve also had the most phenomenal attack of the munchies – I’m hungry.  This is not good.

My legs are incredibly swollen – instead of pushing the fluid back up, my connective tissue just bends and at the moment, my skin stretches to accommodate whatever fluid is around.  It’s not an attractive look.  It also hurts.  I’m on the best drugs to manage it – they just don’t manage it very well.

The Cheetah Keeper has continued to have some of the most monstrous bedtime strops and I find myself wondering where the on/off switch is for him.  He’s so tired – and he’s growing.  Growing is good news for the Cheetah Keeper.  He didn’t for a long time because of his illness and reflux so it’s really good that he’s putting on weight and increasing in height.  But boy it tires him out and that makes the simplest of things hard work.  Add in a *little* testing of boundaries and life gets interesting…

I’m determined to keep going through all of this and so therefore have been nabbing a few moments with my camera to capture what this warmth and rain has brought to us this June…

Even for us this hasn’t been a particularly normal week – no appointments, no meetings, all the right days at work.  It’s a bit weird.  But then again, what’s normal?!

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Author: Jenny

Life, photos and recipes mixed with family life, additional medical needs and a whole load of imaginary friends

5 thoughts on “Waking Up Bendy

  1. Oh dear – lots of good and bad – best of luck with it all. Your spirit remains indominatable, thank Heavens! Big hugs X

  2. You are such a super strong woman Jenny, I hope things improve this week. As usual your photos are AWESOMENESS itself x *gentle hugs*

  3. Pingback: You’re Beautiful – Looking Up « Cheetahs In My Shoes

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