Cheetahs In My Shoes

living with the imaginary menagerie and all that it entails


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Octagenarian Expletives

I spent yesterday morning courtesy of the NHS at University College Hospital in Euston, central London.  I had achieved a rare feat – having two diagnostic tests on the same day.  Not just the same day, the same morning.  For those of you blessed with not having to have experienced how difficult this is to achieve, sit back, breathe and smell the roses.  For those of you that do – you know where I’m coming from.

Despite the ‘system’ being down and having to resort to good old fashioned paper and pens, the receptionists in X-Ray were in remarkably good spirits.  Get the chance to chat to them and they say they have to stay jolly otherwise working next to the morgue would get them down.  The radiographer was delightful and my wait (bear in mind my longest wait in that department is 3 hours) was less than 2 minutes.  X-Ray done and I moved on to the next clinic.

Due to the amazing efficiency of radiography, I was early.  I booked my follow-up appointment with no problems and then settled in on the hideously uncomfortable chairs for the wait.  I am more than used to setting up camp in a waiting room, the constant movement of patients and clinic staff, doors opening and closing, the whirr of the printer – there’ll be me, outside the relevant room with my can of Pepsi Max checking my emails on my phone.

Today was slightly different.  I was sharing the waiting room with the patients of the anti-coagulation clinic.  These patients have to attend weekly (if not more frequently) and seem to accept the clinic as an extension of home.  With the lack of reserve that is usually expected in a hospital.

Today the conversation was loud, and impossible to tune out from…

Essentially there was 1 very ‘chatty’ lady who set about (loudly) ascertaining

  • the age of the other patients
  • their reasons for being at the hospital today
  • their home town
  • reasons why they weren’t being seen at their local hospital
  • ages of their parents if alive, or their age at death (including half years – obviously)
  • other diagnoses, underlying conditions etc
  • how many tablets taken a day
  • how many surgical procedures had been performed on them
  • day/date of next appointment
  • and on…

To all points she added her own stats to compare to along with a few punctuating expletives.  Not many, but a good whinge about having to go to the chemist to pick up her prescriptions and having to fit in her hair appointment between clinics.  She seemed to take a shining to an elderly Cypriot guy who was waiting for his wife – conversation quickly turned into what made him happy…

Would you be happy if you had lots of beautiful girls around you?  [there's a question to someone you've just met in the waiting room] – he was somewhat puzzled by this.

You know, if you had lots of beautiful girls sitting on you, would you be happy? [eeek - this is strangely compelling but it's also like  your parents discussing sex with you]

Yes, says the 82 year old guy, but very tired.

Oh good grief.

His wife came out of her appointment and they trundled off to have her blood tested…

And then the next patient came in and sat down with her daughter and the questioning began…

This patient wasn’t to be quite as forthcoming with her daily tablet intake but was, I quote, in possession of “all my fucking marbles”…as she then insisted to her daughter that her rent payments of £19 a month (it wasn’t a month it was a week but she wasn’t having it) were robbery, that they had to be paid at the same post office because no-one else was knowing her (expletive)business and that she didn’t need her (expletive) walking stick the (expletive) hospital said she did because she was fine without it – all that happened was that she fell over a lot and the last fall had only required 10 stitches and did so and so want that nice soap…

She definitely wasn’t in the state of dementia that I saw in my first ever job working in the old peoples home (don’t ask me about the poo in the filing cabinet incident) – she was just opinionated and more than happy to punctuate her opinions with a few extra choice expletives.  She made sense, her thoughts weren’t quite sequenced as they perhaps once were but she was ok, for her 80 something years…

It certainly passed the time.  What struck me was that the chatty lady seemed to have completely missed that she was only sitting in the clinic due to the care, attention, skill and resources of the NHS.  It was the only reason she is alive.  And yet she really was giving it some about having to collect her free prescriptions herself.

We all like a moan about the NHS – I am more than up there in the moaning queue when it comes to funding being withdrawn, appointments sent after they’ve happened and the difficulty in accessing services for those with complex but non-conforming conditions but it’s a pretty bloody amazing thing that we have access to.

Maybe I should have turned round and said, “You knowing (expletive) what?  Stop (expletive) complaining and be grateful that we have this awesome (expletive) hospital here that we can access from all over the place that makes (expletive) life changing differences to so many (expletive) people that we will never know”

But I guess if I had, she’d have thought I’d lost my fucking marbles…


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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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You’re Beautiful – Clouds

This is my 19th You’re Beautiful and for the first week I’ve doubted myself.  Doubted that people want to read about positive, beautiful things, doubted that I had much to add.  Doubted that I was doing this for the right reasons.  So I asked that font of all knowledge, Twitter, whether I should do one this week – and 2 people said yes.  So even if you’re the only 2 people reading this (and you’ll know who you are), this is for you, with love, for replying.

I’ve been endeavouring to do a post called “a week in clouds” – the view from my bedroom window at approximately the same time each evening for a week.  I got all enthusiastic and then the rain set in and I am completely and utterly convinced that you don’t want to see more pictures of wall to wall grey – with added rain splatters for good measure.  So I’ve combined some of the photos that I’ve taken for today’s post – because, you see, I think clouds are pretty amazing photography material and they make you look at the world around you – looking up instead of at our feet.

So, what’s your contribution to You’re Beautiful this week?  Do you want me to keep doing them?  Let me know and link up if you can x

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and please tell us you’ve done so on twitter using #yourebeautiful

<div align=”center”><a href=”http:// http://cheetahsinmyshoes.wordpress.com/beautiful/&#8221;

title=”Beautiful” target=”_blank”>

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and if you fancy a bit of cloud spotting yourself, here’s the fab guide from the Met Office…

Met Office guide to cloud types and pronunciations
Source: metoffice.gov.uk


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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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You’re Beautiful – #Blogitforbabies

There’s some pretty amazing stuff going on at the moment.  The amazing, super-human, wears her pants over her trousers at all times Mammasaurus is supporting the Save The Children campaign to Build it for Babies and is driving the #blogitforbabies initiative.  Loads of other bloggers are offering their time, have written fantastic posts, donated their worldly goods and put their money where their mouth is buying bricks to build clinics that save lives.  All this is detailed over on blogitforbabies.org and it’s trying to make lives better in parts of the world where people are not as fortunate as we are, whatever we think.

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Those of us in St Albans are planning to do our ‘bit’ on Tuesday 1st May.  Actually Mummy has persuaded the good people at the Noke Thistle Hotel (just off J21A of the M25 and J6 of the M1 – and very close to the A1 too!) to let us have their Marquee for the day.  From 10.45 you, your friends/colleagues/neighbours/random people dragged off the street, are invited to join us, and our very special guest, Mammasaurus,  for a day of making a difference…

At 11am, for a small donation, you’re invited to join in a Rock Choir session led by the inspirational Abigail Smith who’ll be teaching us a song (you’ll know it), complete with harmonies and moves!  Then it’ll be onto lunch, nattering and cake sale.  The ‘official’ #bakeitforbabies cakes will be on sale as will donations from other amazing blogger/bakers who will be creating their favourites for us to purchase.

Children are, of course, welcome all day.  Then from 3.30 there’ll be some dancing a la Justin Bieber for those who are up for it – including any older children who’ve finished school.   Full details, including the link to the Facebook page are here

You’re Beautiful is about finding the ‘wow-worthy’ things in life and celebrating them.  It’s also about supporting The Black Dog Tribe and doing #onepositivething supporting those of us with mental health issues, past or present.  This week I’ve deviated from stones and clouds to talk about a load of people doing what they can to help others, and if that isn’t just a teeny bit ‘wow-worthy’ I’m not quite sure what is.  Why don’t you come and join us on the day?

You’ve been adding a wonderful selection of beautiful things over on the linky each week – and I’m really grateful (and thoroughly enjoy reading them) that you take the time to share the positivity.  What can you add this week?  It doesn’t have to be world changing stuff – just something that, in your eyes, is beautiful.

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The Lunch Date

Last week I went on a date.  A lunch date to be precise.  My date – well, he’s known for his sense of humour, doesn’t drive and is a bit short – but really does love holding my hand.  He’s a bit of a cheap date as he doesn’t eat that much, doesn’t drink and isn’t allowed to stay up very late.  The conversation tends to be focussed around Cheetahs and can get a bit random – he also has a tendency to try and charm the waiting staff…

However, he’s very happy with some obnoxiously coloured ice based drink and keeping an eye on proceedings – including making loud comments about the portion sizes of some of the meals coming out of the kitchen.

I do get to spend a fair amount of 1:1 time with the Cheetah Keeper (yes, that’s who I’m talking about) but it is so rare that we spend time together doing ‘cool’ stuff that going out for a bit of lunch becomes a huge and wonderful adventure.  Our ‘normal’ time together is spent going to hospital appointments and as much as going on the train to London or driving in so far and getting a taxi can be made ‘fun’ (whilst we desperately try to avoid the conversations about how many needles they’ll be sticking in him this time) it’s just not the same.

At weekends it tends to be that we’ll man to man mark – however it’s often the case that I will be the one staying at home with whichever child is unable to/too unwell/too fatigued to do stuff.  Alternatively I’ll take the Cheetah Keeper and his sister out to give their father a bit of bloke time.

The Cheetah Keeper’s sister loves coming into town with me (on the bus, it costs more than driving & parking, but hey) on a Saturday – but that’s usually to collect prescriptions.  We don’t ‘do’ mooching around the shops together – we don’t necessarily have the disposable income to indulge as she’d like and actually, after an hour or so, she’d rather be back with her brother. (long may it last). Mooching around doesn’t have a routine and is sometimes a bit random for her to process to a level where she’s enjoying herself.  The routine that she’d like to be in (involving a trip to the milkshake bar, the purchase of yet more Hello Kitty merchandise, lunch at Wagamama and then perhaps the purchase of something else pretty/crafty) is not going to happen!

But this time, the Cheetah Keeper and I got our lunch date as his sister was at a party.  I’m not sure who loved it more (maybe it was just the pudding) – although my enjoyment kept having twinges of ‘I wish we did this more’ and he did keep flirting with the waitress…

The thing is with dates, sometimes they start well, you have a lovely time and then something happens and you wonder whether it was a good idea in the first place…

I’m linking this, my 200th post (200, how did that happen?) to #definenormal hosted by the ever so gorgeous Renata at Just Bring the Chocolate
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