Cheetahs In My Shoes

living with the imaginary menagerie and all that it entails


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Hiding in the Church Hall Toilet

In the last week I have spent way too much time in the Church Hall.   Enough time to require everything that I’ve worn in there to be washed to get rid of that oh so unique smell of dust, damp, sweaty ballet shoes, over-cooked meals for the elderly, smoking candles and assorted toddlers.

Long enough to have seen 2 sunsets, 1 sunrise and a flood in the car park.  Long enough to have eaten both my evening ‘meal’ (ok, M&S salad, time was short), breakfast and a party tea there as well.  And long enough to have resorted to hiding in the toilet.

Thursday night is Brownie night.  23 delightfully over enthusiastic 7-10 year old girls who bounce in like monkeys on some form of ‘upper’ drug.  Their energy and chatter never ceases to amaze me, neither does their stream of completely random questions.  Heaven forbid that you should have the pleasure of their company after a day of wet playtimes at school – having been in all day they are like a pack of coiled springs that fly off in all directions the minute the pressure of conformance is released…  I digress.  Thursdays means an hour and a half tops in the Hall.  It’s doable.

Somewhere along the line I seem to have agreed to helping out at the Brownie Sleepover.  This hellish joyous experience meant the entire Brownie Pack (all 23 of them) plus 2 teenage helpers were to sleep in the Hall on Friday night.  That’s right, 25 girls in one room to ‘sleep’ over.  Arrive at 5.30pm and leave at 9am the following morning.

Now, as you know, I will volunteer for most things however, I draw the line (and it’s a very thick black line drawn with an extremely permanent pen) at being in charge of large groups of other peoples children overnight.  I will help.  I will mop up the bodily fluids.  I will not be in charge.  I will run meetings, I will do the paperwork but this Tawny Owl does not do overnight.

I also don’t like sleeping on the floor.  It does me no good.  I do not pay the osteopath the amount I do to undo all her good work but sleeping on a mat on the Church Hall floor.  I volunteered to be the off-site overnight emergency contact.  I got to ‘sleep’ in my own bed – and said I’d stay on site until the girls went to sleep.  Sleep??  Went to sleep????  Who was I kidding?

I left at 11pm.  ‘Midnight’ feasts had been consumed by 9pm, stories read, lights were out.  Then the toilet trips started.  In the space of 2 and a bit hours, there must have been the best part of 300 toilet trips. It was biologically/physiologically impossible.  They didn’t care.  They pee’d and giggled and giggled and pee’d. Most of them were still awake when I left.  I didn’t sleep much at home – I kept waking up wondering if the phone was going to ring…

I was back on site by 6.50am – principally to get the kettle on for the 4 heroine leaders who’d stayed overnight.  25 over-excited girls running on pure adrenaline (it sure as eggs wasn’t the regenerative power of sleep) required a lot of tea and the patience of an army of saints…  It reached the point where I could take no more (despite a couple of danish pastries) so what did I do?  Dig deep, draw on my years of Guiding experience, push myself to the next level?  No.  I hid in the toilet.  Took a moment (or 5) and regathered myself enough to go and teach them to sign the favourite Little Green Frog in Makaton.  Then I hid in the toilet again and nearly fell asleep.  Classy huh?

For those of you who leave your children in the loving care of the volunteers of the Guide and Scout Associations…this is what it does to us!  And we do it, for free.  As we handed them back to their parents, with fixed grins and wishing them luck for dealing with their over-tired daughter for the rest of the weekend, the words “when we do it next year” were uttered.  We’re planning a different hall this time – with more toilets.

The rest of the day was sponsored by Twinings Earl Grey and Pepsi Max and I admit to raiding the cooking chocolate box.  Just so tired.  It’s like a hangover but worse.  I can do staying up late and getting up early (occasionally) but it’s the graft of looking after 24 kids that aren’t yours, plus 1 of your own.  I took to the sofa.  I was asleep by 9.30, ignoring the amorous intentions of my DH (yeah right darling…)

So how to spend Sunday…? a luxurious lie-in, breakfast in bed, leisurely morning with the papers, F1 Singapore Grand Prix… I can dream.  A mad morning of shopping, homework, family visits and a party for the Cheetah Keeper to attend.  Guess where it was?

Yep.  Back in the Church Hall.  27 hours after leaving, I was back there.

The thing with the Cheetah Keeper and his nosebleeds is that parties are difficult.  I am completely happy leaving a pre-filled syringe of medicine with some hosts, others I’m not.  Yesterday was a ‘not’ day.  I was staying.  I may as well move in.

This party was a joint 6th birthday for two children in the Cheetah Keeper’s class.  It was the first ‘big’ birthday party the parents had ever done.  Both cultural backgrounds meant that the room was full of extended family and friends not doing anything.  The catering operation was phenomenal (and delicious).  The balloon art was eye-watering.  The entertainment for the children was… non-existent.

Not prepared to watch the boys attempt to beat the proverbial out of each other, Tawny Owl took over.  I sorted some games, I split up the fights, I co-opted another mummy (Reception teacher) to help.  I provided the best part of an hour of entertainment.  I got them all sitting down for food.

I enjoyed the grown-up catering and then guess what I did next…

Hid in the toilet.

The parents have yet to say thank you…


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Olympic Cheetahs

This seems to be my 300th post.  In less than a year I’ve gone from writing purely about imaginary friends to having 2 blogs, a love affair with my camera and collaborating on all sorts of other stuff.  I digress… (it may be something to do with the shock…)

I haven’t written about the imaginary menagerie for ages.  Their antics, whilst amusing, are part of our lives and they live quite a ‘normal’ routine – lots of jet-packs, magic powers, vehicles and jumping around.  There are a whole load more imaginary friends – Rockhopper Penguins being the favourite although I’m not entirely sure whether the Rockies are the Cheetah’s imaginary friends or are adding to the register of Cheetahs, Banana People, Dinos, Strikes (the Dino brothers from Spain) and their friends and relations.

As I’ve written about already, we’ve been thoroughly caught up in Olympic fever.  The Cheetahs came to see the torch relay:

look – here they are to watch!

and as far as I’m aware, got to balance along the Olympic bunting – although I’m never quite sure now whether they’re doing that to get up to mischief or just for a bit of fun.  The Cheetah Keeper is a very different character to the one I first started writing about – his confidence has grown so much during his time in Reception and the Cheetahs are now part of our lives in a more imaginative (and surreal) way than purely being a crutch in stressful situations.  They still increase in their activity when he’s worried about something and always come to hospital appointments but he is growing the skills to use them to his advantage!  (“Mummy, you’ve hoovered up my Cheetahs and now I shall cry…”)

I posted about our trip to the Madejski Stadium for the Olympic Torch Celebrations over here and there was a ridiculous quantity of time spent sitting around.  To ‘entertain’ the the crowds, the Olympic mascot Wenlock was out and about – way out of our reach though.  And as we sat there, a little voice whispered to me “I’ve got ‘maginary Mandevilles and Wenlocks now Mummy”.  I winced smiled lovingly and asked him to elaborate…

Apparently every Team GB athlete in the Olympics has a tiny imaginary Wenlock who sits on their shoulder (or shoe, or swimming hat etc) who’s there to help them try to be the best that they can be.  Without them, the athletes won’t be as good.  The same goes for the Paralympians – they’ll all have a tiny Mandeville to help them.  He’d clearly got this all worked out in his head (as he always as, to the most minuscule of detail) but it never ceases to amaze me how he has the ability to consider the needs of so many others – from his little head that melts down completely if he can’t sit on a particular chair at a particular moment.

As well as all the Olympic ‘maginaries, the Cheetahs have been taking their role in the Games incredibly seriously.  A 3 week training session in Running Land produced genuine tears as they hadn’t come back to see their Keeper at bedtime and he missed them.  There was no consoling the boy – the other friends would not do – and then he milked it, and milked it a bit more.  I started to run out of sympathy (sorry).

So they’re back now – they’ve apparently had a run on the track (obviously beating everyone) and a swim in the pool (yes, Cheetahs can swim – the real ones – as long as there’s food involved) and have their own little team trainers.  They’re taking it as seriously as their Keeper but I guess he’s a bit gutted that they can’t compete in the Velodrome (never say never…).  The Cheetahs are going to take part in the Paralympics too – I suspect helping the wheelchair athletes go a bit faster.

In the meantime, some of then have been to MudLand to jump in some puddles and let off steam.  Some have been on holiday with us – can you see them in his hood?

The Cheetahs hardly ever live in his shoes any more – they’re far too busy with their other stuff – and tend to sleep in  his bed – it’s much cosier there.  They’re fond of spotting an Eddie Stobart lorry (as they always have been) and running along the motorway with us (that’s what the white lines are there for…) or surfing along on the back of the car hanging onto the back windscreen wiper.   I admit that some of their antics do drive me nuts now – especially when they invite all their friends over (giraffes, penguins, flamingoes) and I’m expected to remember them all but I suspect they’ll be with us for some time to come – especially as the beautiful mummy Cheetah, Dubai, at Whipsnade Zoo who gave birth to the original Cheetah cubs that inspired these friends in the first place, gave birth to her second litter in May this year.  They went on show to the public last Friday and we were there on Sunday – and with such a beautiful mummy and 7 new bundles of fluff, I think the ‘maginaries will be with us for some time yet…


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Summer Holiday Resolutions

So, school has finished.  I’ve given back all the piano music for the year.  We’re off until the 5th September when being a Swan in Year 3 and a Puffin in Year 1 await (can you learn how to make Puffin cakes Mummy?).  We’ve had our customary sitting room picnic tea and the uniforms are in the wash.

2 years ago our summer was based around Great Ormond Street Hospital – a 2 week inpatient stay and all the preparation involved.  We were also helping to look after Renata from Just Bring The Chocolate‘s lovely Lilia and Elliot whilst Dominic was beginning what was to be a very long stretch in GOSH.  It wasn’t a proper ‘holiday’ – we were in limbo land and as much as we did some fun stuff, the prospect of our time in GOSH loomed.

Last year we hurtled around like mad things, trying to do all the, ahem, normal, stuff you do in a summer holiday plus all the stuff we hadn’t done the year before.

This year, as I’ve enjoyed my reduced ‘sling it and ding it’ curry I’ve made a few resolutions for the holidays…

That’s not too ambitious is it??

I’ll be blogging about our exploits on here (the Cheetahs are very excited about the holidays and the Olympics) and posting more pictures over on my other (new – please pop by!) blog Just Photos By Me.
What are you resolutions for the summer holidays?


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All I did was bend over…

…to pick up one of the Cheetah Keeper’s trainers.

It was Friday morning last week – we had an extra friend for breakfast and having nailed the 3 children to school, on time, in correct shoes, with correct stuff, the day before I was confident it could be done for a 2nd time.

The Cheetah Keeper was having none of it.  He didn’t want to go to school, getting his uniform on was a battle and as for the shoes I had no hope except to get them for him.  So I bent over to pick one up – just one little trainer and PING followed by swearing and such words as OUCH followed.  My 4th lumbar vertebra disc had decided that being in place was just not on and had slipped out a bit.

I eased (ok, swore) myself back to upright, and staggered, very slowly and apparently looking grey, to school – late.  The Cheetah Keeper’s sister was crying because we were late, the Cheetah Keeper was crying because he didn’t want to go to school, and said small friend was running ahead.  You can imagine the scene.

I staggered home, took a fistful of drugs, and attempted to do some work before my (thankfully) pre-booked osteopath home visit.  She confirmed the slippage of the disc, manipulated it back into place and left me shaking, hobbling and still cursing – with the promise that things would hopefully improve over the next few days/week.  I took some more drugs.  I kept shaking.  I went back to school to play for a rehearsal knowing that if I was going to keel over it was better to do it with people around me rather than on my own at home.

My Ehlers-Danlos Syndrome means that some bit of me hurts most days.  Not enough to make me nauseous or pull up on the spot but just enough to think – ooh, that hurts a bit.  It can be a knee going downstairs, a finger on the mouse-wheel or my pelvis grinding when I drive around a corner.  That’s just ‘normal’ for me.  I have the drugs at home to deal with it if I want to, but generally I don’t.  To quote one particularly astute consultant “you’re a tough old bird” – he’s right.  I don’t feel the need to share this with anyone (unless they hear the joint click out of place and ask what’s just happened) – there’s no point and it would make for a pretty boring conversation.

Just over a month ago I started reducing some of my meds – I’d managed over Easter to reduce my dose from 3 tablets a day down to 2.  I’d been through a fair assortment of side effects (lack of concentration, short temperedness, very up and down) but I’d done it and I was in a good place.  Annie and I were working on Bake Yummy, BritMums had somehow included me in the Video shortlist for the BiBs and we were doing ok.  Our appointment list was reducing, I was managing to get my workload in and I was back playing the piano at school.  So, I thought this was the perfect time to reduce the dose again.

Within days my Ehlers-Danlos had started to flare up.  By flare up I mean that I was experiencing far more partial dislocations than ‘normal’ (or indeed acceptable in my eyes), my emotions were all over the place, concentration was lousy and I generally found simple things hard to deal with.  My joints were painful, especially those that were moving about when they shouldn’t – including my feet, knees, pelvis, jaw and wrists.  For other people with EDS this is a day to day occurrence – for me it’s a sign that something is wrong.

It’s suspected that it’s a hormone imbalance – possibly exacerbated by the change in meds or maybe it was just bad luck.  The side effects from the drug reduction should last a couple of weeks at most – but in my case they’ve stayed, and to a degree, got worse.

Over the last few days it’s been ‘noted’ (and by that, I mean said to my face by those very close to me) that I’m moany, unappreciative, uncommunicative, lazy and negative.  I’ve apparently been making too much of the fact that I’m pain, am being inconsistent in what I can/can’t do and should be appreciating more of what I’ve got and getting on with life.

Drugged up to the eyeballs (tramadol, diazepam and naproxen for those of you who know what they are) and still in pain I’ve found it really difficult to be full of the joys of summer.  The grim realisation that I screwed up my work on Friday and Monday in a drug induced haze is not easy to take, nor is the fact that I am not safe to drive.  The Ehlers-Danlos makes me shake, the drugs and the movement of the disc make me shake even more.  The change in meds has made me up and down – the back injury even more so.

The more I’ve thought about it today the more I seem to have a ‘choice’:

I can either take the drugs – and be able to do more (they take the edge off the pain but it’s still there – I’d need pethidine to be pain free) in terms of everyday tasks, looking after the children etc – but with the side effects of feeling groggy/woozy, nauseous, shaking even more and not being able to concentrate

or

I can leave the drugs – and be in acute pain which limits my every day activities, makes me nauseous, overrides my ability to concentrate and still leaves me shaking.  I would avoid the wooziness but be in far more pain.

The GP kindly explained that the shock of the disc moving is putting my already stressed body under intense strain – so that makes me shake and explains why I’m having problems regulating my temperature, feel sick and generally feel, well, bleugh.  Without Ehlers-Danlos a slipped disc is an extremely painful and unpleasant experience – the combination of the two is horrid.

So when you’re in this situation and people ask how you are, what do you answer?  Saying “oh fine” is an outright lie.  For those who know you better they can generally see by the colour in your cheeks and the look in your eyes whether you’re telling the truth.  However, telling any modicum of the truth can be seen as being over-dramatic, moaning or not very British.  We’re conditioned to say ‘oh fine’ however much we’re hurting inside.

I don’t want to say ‘oh fine’ because if I’m not.  I don’t want to say that work is brilliant because, at the moment, I feel like I’m letting them down and I’m pretty bloody overwhelmed by it all.  I’m not delighted with school because there have been some fundamental errors in the health care of the children and that angers me.  Being a parent of 2 children with additional needs is not easy – and as much as I am blessed to have some dear friends who point me again and again in the right direction to get the information/help they need, the constant meetings and having to repeat time and time again what is wrong with the children is soul destroying.  Yes they have a condition that you’ve never heard of, yes they’ve inherited it from me, no they won’t grow out of it and yes, although they may be working in ‘normal’ parameters that doesn’t mean you should ignore/give up on or dismiss their needs.

I am incredibly proud of how they both manage, how they don’t flinch when it’s time for yet another blood test, how they put so much effort into everything – but underneath, festering are all those questions, the next meetings, the planning ahead…

The recovery time for such an injury is usually about 4-6 weeks – in a ‘normal’ person.  People with Ehlers-Danlos are not ‘normal’.  Our strange bodies and faulty connective tissue can mean that this period can, on occasion be doubled.  With the summer holidays approaching, I struggle to see the positives in that one.

The summer holidays of 2010 were spent mainly at Great Ormond Street Hospital.  The summer holidays of 2011 were a frantic attempt by me to make up for all the fun we didn’t have the year before.  I drove myself into the ground and ended up on antibiotics!  This year I wanted to have a ‘nice’ holiday – no guilt, no dashing from pillar to post; – a bit of mooching, a bit of doing, a bit of fun.  Catching up with friends, enjoying the odd lie-in and slowing down the pace of family life a bit.  That 4-6 week recovery time slams straight into those ideas – I guess it serves me right for hoping.

Pain affects people in different ways.  I’ve been taught strategies in the past of how to manage – there are ways and means you can carry out every day tasks without exacerbating a particular problem/injury.  I can apply those and get jobs done.  And then I am accused of making up the injury and milking the situation.  With Ehlers-Danlos you cannot take to your bed – the muscle loss will make the problem even worse – you have to keep going.  Gentle movement, taking it easy but not grinding to a halt.

Hoovering and cleaning the bathroom do not (in my mind) count as gentle movement/taking it easy.  They are jobs that can wait.  But I don’t believe this makes me lazy – although I’m told it does.

It was suggested today that I should “try and be more positive” as “everyone thinks you moan all the time”.

I find that talking to other people helps me process what’s going on and that bottling it up inside makes it fester like some bacteria ridden pot of houmous in the fridge that will eventually explode.  Oh, and I also find it difficult to lie convincingly – those who know me well can see straight through me.

So if I know that I am amongst people who don’t (or don’t want to) understand, I guess I can be uncommunicative.  There is no point pouring out your thoughts and worries to someone who does not or cannot cope with having to understand.  Equally admitting your fragile mental and physical state is not easy at the best of times – because it is essentially seen, in our culture, as failure.

My body is failing, my mind is failing and therefore my ability to ‘snap out of it’ (to coin a phrase) is somewhat limited.  So, I’m sorry if I’m whining, whinging, uncommunicative, negative and not completing tasks to your satisfaction.  I’m trying to hold it together for now and being in pain, tired and under pressure to keep things ‘as they should be’ (whatever that is) it’s really bloody hard.


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You look like you’ve been told you have a 3rd child…

These were the words that greeted me as I emerged, slightly shaky after parents evening on Tuesday.   I clearly did not look the composed woman I try to give the impression that I am as I had hoped.  I didn’t feel that composed and ended up in conversation with the Head and one of the Governors.  If I had posted that evening it would have been a jumble of words as I tried to process things and now, 3 days on it’s kind of making a bit more sense (ish)

I read other brilliant posts about parents evenings earlier in the year.  There is the shared suffering of the chairs that are just too small and that the mere process of sitting down makes you uneasy.  It’s a long way down to a Reception size chair when you’re nearly 6′ tall and have dodgy knees that then don’t fit under the table.  You’re on the back foot to start off with.

You have your allocated 10 minutes to discuss your child, ask your questions, review their report and come out with a digestible summary that can be passed onto the child, significant others and quite possibly the grandparents.  You also need to be able to process it in a way that means when you come out you can talk happily to other parents about how well your child is doing and leave, with a spring in your step thinking that all is good.

I seem to be the only parent who finds parents evening an overwhelmingly emotional experience.  For me they seem to be a 10 minute judgement of your ability as a parent, partner, medical expert and information co-ordinator.  I need to be a data analyst, work out the probing questions, deliver them without sounding stupid/condescending/aggressive and then process the answers accordingly.  I want to know ‘the plan’, I want to know what they’re looking at ready for next year, oh, and I want to know if they’re happy, whether the child that flushed the PE kit down the toilet has been identified (no) and why it was ever deemed appropriate to let children inflict Chinese burns on each other which resulted in bruises that lasted nearly a week (it was a bit of fun that got out of hand).

With both children having their own additional needs the process is doubled and, due to the helpful appointment schedule, the entire process is to be completed in half an hour.  Half an hour of guilt inducing hell.

I will be questioned (and have been recently in no uncertain terms) by other medical professionals about how the children are ‘doing’ at school.  How their condition affects their day to day ability to learn and integrate into school life.  Each medical professional will then have their own opinion as to whether I am making sure their particular speciality is dealt with in the best possible way.  Sod the rest of them – theirs, that day, will be the most important.

Physios will want the children doing more exercise, the Occupational Therapists will be looking at posture and fine motor skills, the Speech and Language team (if they’d see us like they say they need to but don’t have the funding for) would want more focus on that.  Each speciality believes that if we up their particular requirements the children will ‘do’ better at school.

But how do I know what they would be doing if they didn’t have their conditions?  Would they be achieving more, enjoy school more, be happier? Both of them are sitting in the realms of ‘normal’ and therefore there are no issues that require immediate flagging.  At the moment we need to wait until they start to struggle/fall behind before interventions will be made.  We can’t consider that their conditions mean there is a probability that they will struggle and make sure they don’t fall behind.  We don’t have the evidence for that.

They have a condition that varies from person to person – there isn’t a check-list or a ‘what to expect with a child in your class that has Ehlers-Danlos Syndrome’ file.  If they were correct for one child they’d be completely wrong for another.

The one person trying to process all the information from all the professionals is me.  Trying to link up what they’re each saying and report, accurately to the others to whom it is clearly impossible to send a letter.  Their teachers can’t be expected to have the medical knowledge – that’s not their job – but who has to explain it to them?  Compared to other children mine are doing perfectly well thank you – but how would they be doing if they didn’t have the condition?

Add in the fact that they’ve inherited this condition from me – it’s a point that I am usually completely at ease with.  It happens.  We know it.  At parents evening it feels like I am the one that has caused all the problems.  Oh, and if I’m having a bad time, in pain and struggling to function, well, it’s adversely affecting the children and their education.  Get a grip woman.

Except I don’t seem to be able to get a grip.  I come out with the weight of the world clearly visible on my face as I try and work out what I’m meant to do next.  ‘Celebrate the positives’.  OK – the positives are wonderful but they’re almost a relief.  Are they happy?  Most of the time.  Good.  Who’s going to be doing the meds next year?  oh, we can’t tell you that yet…

All I’m thinking about is what’s the next plan, have they understood what I’ve said, am I making a fuss and what’s going to happen next?  Ideally without crying – I’m not sure why I want to cry but it’s welling up…

Oh, and how to get up of these bloody chairs…


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Waking Up Bendy

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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Homework

The Cheetah Keeper’s Sister gets homework from school every week.  It’s a weekend chore joy as we extend her learning from the previous week off to an extra dimension.  This is (obviously) in addition to her 10 spellings she needs to learn, her piano practice (which she loves and is also brilliant occupational therapy and physiotherapy for her finger and postural muscles) and as much gross motor skill physiotherapy as we can squeeze in.

The homework topics are varied – ‘numeracy’ (‘sums’ in old school speak), ‘literacy’ (yep, writing), drawing, researching and talking about stuff.

This term’s highlights have included finding out about her favourite animal, drawing it and making a fact sheet about it (sealions, obviously), talking about how to resolve conflict at home with siblings or with friends, researching then writing and drawing about the signs and symptoms of tropical diseases (yes, really – I left the death statistics out) and this week learning a tongue twister off by heart.

She doesn’t find any of these easy.  Her Ehlers-Danlos Syndrome makes holding her pen hard – it’s tiring and it hurts.  She has to work to make her eyes track together to follow what she’s doing.  She finds ‘sounding out’ words difficult because she has difficulty saying them in the first place and getting everything in the right order is a constant challenge.

She didn’t really talk until she was 3 and a half.  Her oro-facial muscles and her tongue weren’t strong enough to be able to form the right shapes to make the sounds and she stammered.  Speech and Language Therapy got things going and she now has a comprehensive vocabulary and is pretty easy to understand – unless she’s tired or ill when it becomes all a bit slurred and garbled.  The stammer returns when she’s trying to answer a complex question quickly.

We were discharged from the Speech and Language team with a letter that said that there were still issues that needed resolving and a subtext that there were other children far worse off and they didn’t really have the budget to deal with an Ehlers-Danlos related issue.   So we trundle on and at the moment are trying to ascertain whether her problems with sounding out words and speech are educational or medical.  Obviously neither party wants it to fall under their watch so much faffing is going on and not much progress is being made or support offered.  It’s down to me to keep pushing and liaising and chasing and applying pressure so that she gets the help she really needs.

Back to the homework – She Sells Sea Shells on the Sea Shore.

These are all sounds that she finds difficult to produce on a ‘normal’ day – let alone having to stand up and recite the full tongue twister in front of her class.  To me it shouts that her teacher has not considered her needs/underlying issues AT ALL.

Would you genuinely set a piece of homework that a child, with a named medical condition and a set Individual Education Plan would find nigh on impossible?  Do you expect them to ‘raise their game’ above and beyond what their body can do?  Or will you expect them to ‘perform’ like everyone else, stand up and humiliate themselves in front of their peers?

Alternatively you could think about the needs of that child and find an alternative tongue twister that meets the needs of the topic but doesn’t destroy that child’s confidence?

This week I’m not going to force her to complete her homework.  She’s got an extra art project tomorrow (fine motor skill challenge), a school trip on Wednesday to the Science Museum (uber exciting, uber tiring), her class assembly on Thursday (with lines to learn) and then allegedly to deliver her homework in front of her class on Friday.

IF her teacher says that she has to miss part of her ‘Golden Time’ (free play) on Friday because that homework’s not completed I will be up at school making my opinions very clear.  Fighting over not doing homework?  Yes.  If that’s what it takes.  Because sometimes you have to think around ‘normal’ to make sure everyone’s got an equal chance.

What would you do?

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Needing a Crystal Ball and the 10 Minute Hospital Admission

Between us we have rather a lot of appointments with members of the medical profession.  Not as many as some, but definitely more than most.  I tend to let out a small (silent) cheer when we don’t have an appointment in a whole week for any of us.

This last week has been no exception and it was my turn to have my wrist prodded and ultrasound scanned with what is classed as “+/- steroid injecton R wrist”.  That means, if the radiographer can see a problem, go right ahead and inject it rather than faff about telling the consultant what they’ve found and the consultant having to do it themselves…

Anyway, I had the pleasure of the company of the gorgeous Clara Vulliamy before my appointment and was in the process of sampling some rather delicious cake when my phone rang.  It was the Pediatrician from Northwick Park Hospital (bear in mind, dear reader, that I am in Euston, central London) asking where the Cheetah Keeper’s Sister and I were.   The answer being she was at school and I was heading for University College Hospital – why…? Because we were supposed to be at an appointment with him at the same time.

This is the point at which the crystal ball would have come in really handy.  You see, I reckon I’m pretty good at getting us all to the right hospitals at the right time – even to the point of arranging multiple appointments for multiple children on the same day, and, brace yourself, at the same hospital.

Now, to the uninitiated this sounds like plain old common sense.  Only when you try and pull off this miracle of organisation to you realise that unless you a)cry b)beg or c)get incredibly lucky it is virtually impossible to achieve.  Why make only one trip when you can make two, or three…?  That crystal ball (especially one that knows when the consultant is in situ) would be worth a whole load of money to tired, frazzled parents dragging tired, frazzled children across the country to go and sit in a waiting room for an unknown period of time, to come out with or without a) an answer b) the answer they were hoping/not hoping for or c) a ‘plan’.

So it transpires I was supposed to be at Northwick Park at the same time – however, in the absence of the crystal ball I didn’t know.  Why not?

Because of this:

which was waiting on my doorstep on my return from my appointment.  Yep, dated 8th May, posted 9th May for an appointment on the 10th May.  And they were wondering why I wasn’t there!  The 11th May saw the arrival of our “failure to attend” letter (how cross was I?!) and the rescheduling of this appointment to June (as discussed on the phone) – phrased as if they were doing me a favour.

So – taking a quick leap back to the Radiography team at UCH and my wrist.  It was decided to go ahead with the injection (without anesthetic) and I was admitted to hospital for a whole 10 minutes.  Yep, wrist band and everything.  For 10 minutes.  The follow up appointment was then discussed.  My follow up appointment had been booked for Thursday of this week (so 7 days after the ‘procedure’)  but it needs 6 weeks to see if it’s worked.  So I had to rebook that appointment too.  Guess what the only date they can do is?

The same one as Northwick Park.  So if anyone has a crystal ball they could lend me to help me do the school run, get to and from UCH in the morning, home to collect the Cheetah Keeper’s Sister and back to Northwick Park in Harrow, using public transport and the road network, meanwhile accommodating the Cheetah Keeper somewhere, I’d really appreciate it.

Define Normal BadgeI’m linking this up as part of the Define Normal blog hop that Renata runs over at Just Bring the Chocolate.

What I’m writing about is ‘normal’ to us (albeit frustratingly normal) and there are a load of other posts over there that make our lives look pretty uneventful too x


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Prove It.

Prove that you’re a good mother

Prove that you’re a loving wife

Prove that you’re a loving daughter/sibling

Prove that you’re a good friend

Prove that you can cope with looking after your home

Prove that you can fight for the best for your children’s health

Prove that you can fight for and engineer the best for your children’s education

Prove that you’re a good employee

Prove that you know what you’re doing

Prove that despite your health you can do whatever you want to/need to do

Prove that everything is under control

Prove that you’re holding it together

Prove that you can make a difference

Prove you can be there for those who support you

Prove that you’re good enough.

How?


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Anemones

I wrote about making pizza with our gorgeous next door neighbours last week.  As well as being some of the nicest people you could ever, in your wildest dreams, hope to live next door to, the also have a kitchen that causes me to have bad attacks of kitchen envy.  Don’t get me wrong, I love my little kitchen, my blue glass tiles and the fact that I helped build and paint it – but 10 years on, it’s showing the signs that I did help to build it and the bits that were a little bit wonky are now struggling under the weight of my newer, heavier pots and pans.

Anyway, back to the kitchen envy.  Just sitting there in a very plain white jug on her windowsill were these lovely anemones.   Picnik may have gone but Picassa has adopted many of the features so with a bit of technological jiggery pokery (although not that much), I bring you these:

I love how anemones have such beautifully defined petals but look so solid at the same time

and despite the fact you look at them as a solid colour, in the middle there’s a little blast of colour just waiting to be spotted

and that the stems may look a bit straggly but actually they’re just doing their own thing, getting ready to bring some more beautiful blooms to us.

Kitchen envy – yes, flowers in kitchen looking amazing envy – yes.  Envy is not a good thing – maybe I should go and buy some new flowers for my windowsill.  What do you think?