Chronically Optimistic

I quite often feel bemused when people look at me just getting on with life and exclaim “I don’t know how you’re so cheerful”, or “I don’t know how you do it. You’re really brave.”

Anyone who actually knows me, knows that rather a lot of the time I’m angrier & more irrational than a wasp, and spend an unnecessary amount of time holding pity parties. Generally this is in the privacy of home where Mr Geek can appreciate the full spectrum of my whining. God, he’s a lucky bastard.
But as I trundle out of the door, Mr Geek gives me a kiss & grumbles something about dinner and I slap a smile on.

Because, you know, if you take a deep breath & smile…. it confuses the living shit out of people. I smile at people because it makes people feel nice to be smiled at. I love my good morning routine as I roll past the ladies in the front office, the premises guys, & the happiest maths teacher on the planet. 

It doesn’t matter that I’m struggling with increasingly uncontrollable pain levels. I’m more than my body. I might not be physically dancing about in a snorkel anymore, but I’m still me. Weirdly, the end of term approaching has reminded me that I’m more than the sum of my parts. Rather than finishing this year haggard and wondering what a bloody stupid idea it was to become a teacher, this year I’ve been a wreck anyway so actually I’m ending it appreciating all the ways that teaching allows me to be a real person.

Next year, I welcome my new form (my last lot have now flown my nest after 3 years of growing into adults!). Each of us in the year team have a special reason for students to be placed with us – think of it like a teacher talent tree. Mine is routines & extra TLC. Our routines are visual and planned in advance – I am happiest when everything is structured & my kids tend to be those that thrive on similar. The TLC bit applies to a whole range of reasons. Kids arrive with a spectrum of issues that reflects the adult world, from shyness to mental health to physical health. There is no child that doesn’t benefit from someone who welcomes them as part of their extended family. In turn, I get to witness their successes, their soap opera style relationships, hand out birthday cards, read to & with them, I’m the sympathetic ear when they need one, and the kick up the backside when they’re being a knob. My last form witnessed my health decline rapidly over 3 years & they used it to forge intensely empathic responses to others who needed help. I didn’t think I could be prouder.

Then I was when I met my new form. I ended our induction day by showing their parents photos of our day together where they’d overcome fear of school, of new places, of sensory overload, of looking silly (posing for selfies with our form teddy bear when you’re 13 wipes out any Alpha male ideas). Just like having another child, you don’t divide your love, it multiplies. And stealing the words of an old headteacher “you’ve gotta love em. Children, no matter how old, need love”.

So as one academic year ends (in a week and 1/2) & another is right around the corner, I’m optimistic. By September, I’ll have my Master Teacher badge which sadly is just that – gone are the days of elevated pay, but it’s nice to be recognised as a subject specialist & be involved with training new Computer Science teachers.

Making it through the tough bits means I reap the rewards of being a stubborn arsehole who’s still got more fight left in her. And, well, Mr Geek, that lucky bastard gets at least another academic year of me falling asleep on my marking & being a diabolical wife.
Maybe this year will be the year I finally get around to submitting my fellowship for the Society for Education… dream big 💖

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I Have Faith, It’s just Not Your Faith

It’s Christmas and there’s lots of people celebrating in their own way, and whilst out shopping for my beautiful girls’ gifts I was approached by an utter stranger with the words “he will heal you when you let him into your heart”. Unlike last time, (and because it Wasn’t a child) I responded with my actual thought of “Don’t be ridiculous”. Also stop touching me. Personal space please.

I fully expected to laugh about it on the way home, but instead I packaged it away in my head. And waited until now in my safe blog space to explore it. So welcome to my 1am painsomnia party. Anyone in the house who can’t sleep despite both diazepam and oramorph shout “heughhhhhh!”…..  oh. Ok. Just me then.

I know a lot of people who have enormous faith, some Christian, some Muslim, others Buddhist. They are kind, wonderful people that I am richer for having in my life. I was raised Christian,  but given the freedom to make my own choices (with a healthy dollop of Catholic guilt should I choose to leave the church). But whilst the amount of water remains the same, my glass got bigger.*

My first bug bear was the idea that I got ill because of something I did. Sin makes you sick… or I did something to deserve this stupid genetic condition that wreaks havoc with my internal organs and encourages my skeleton to separate at every possible occasion. I deserve this pain because I sinned. How very Catholic. If this is the case, had I known, I would’ve enjoyed that sin a lot more.

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The other suggestion I’ve had from people of faith is that God has a plan and this happened for a reason. So, this all loving father tried to kill my daughters (which were saved by science) and has had a fair few pops at me and because I’m the weeble that won’t fall down, we’re just throwing pain in my direction because there’s a reason I feel like death on a daily basis, it’s just on a need to know basis. Bollocks.

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EDS has been slowly stretching me like chewing gum for a decade (and much longer when you consider childhood injuries), although this year the stretching went nuclear, but to add to that CRPS developed in my pelvis. I will not be stronger because of this, what I will be is physically addicted to opiod medication because this is levels of pain that no amount of praying is going to touch. In those wee small hours in the early days when my bones felt like they were running with acid, I prayed,  I begged, I would make bargains. In the end, the being that made it stop, or at least tolerable, was a GP with a recognition that I needed something to work on my neuropathic system. If you are reading this and still think you should post a passage from a 2000 year old book to tell me why I feel pain, please study the chart below. Now live that pain daily until science rescues you.

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The side effects of Neurotonin which was prescribed alongside a whole host of painkillers for the non-neuropathic pain, are similar to those following a mild stroke. The drug prevents synapses from being formed and as suc, words are temporarily lost from my vocabulary and my short term memory worsens. I quite literally did give CRPS a piece of my mind.

My faith is placed with my doctors who have dedicated their lives to solving the mystery of dysautonomia and eds. They do not declare themselves infallible or omnipotent, but so far they have been brutally honest about a lack of a cure, whilst helping to reduce pain and set me on a path where I’m strong enough to help myself plateaux rather than slide down further. I do not worship them, rather respect them and trust them quite literally with my life.

I will finish the same as I started. If you have faith, that is a wonderful thing. I commend you for holding onto that light in a world that’s pretty hideous right now. But, please don’t try to convert me. I am a humanist – I deeply believe that we should attempt to treat each other how we wish to be treated and take care of the things around us. When I die, I believe that it is the end – my body will go back to being part of the earth and I will live on genetically in my children. What matters is the here & now rather than any afterlife.

Christmas to me is a Pagan festival which celebrates the winter solstice and the idea that hard times are over half way through. Spring will soon be here and with it the warmth that will sooth my bones and food that will support my slowly failing body. Despite this, it’s also a holiday adopted by other religions to promote a sense of community, and anything that makes us look at someone and ask them if they need a hand (or leg, or shoulder) can’t be bad.

So to you, whoever you are. I hope this week brings you a small piece of love or joy in the form that you hope for. And if you possibly can, this week pay it forward – ask at a coffee shop if you can pay for the next person’s coffee, go sit with the little old lady sipping tea on her own and listen to her, see that lady in a hijab looking uncomfortable on the bus? Go sit with her and smile if she looks at you, listen to the carol singers at your door and thank them for bringing you music, however bloody awful and put of tune it was, ask the lady in the wheelchair if she needs a hand. Be nice. Human nature is not to be cruel.

*kudos to you if you got the reference

It’s Easy Isn’t It?

It’s very easy to get frustrated when I can’t just get up and do something myself. This gets magnified a gazillion times when you add hormones into the mix.

Just for reference the week before “that week” involves extra wobbly joints, extra joint pain, not so random CRPS flares, breasts that swell and feel like they’ve been used as speed balls, retention of enough water to solve a sub-saharan drought, and just a teensy bit of irrational anger.

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It’s very easy to forget that you picked me up from work, cooked dinner, shuffled the kids to bed, and because of all that washing my stinky wrist braces was not high on your agenda.

It’s very easy to forget that we’re separate beings, so your day hasn’t been spent listening to my squeaky wheel so you did forget to oil the bearings because you haven’t heard them squeak since this morning. It’s also easy to forget that a week isn’t actually that long since I mentioned it – you’ve had other plates to spin like making sure my chair battery is charged, scanning every medical letter that arrives, planning our combined diaries, getting me to doctors appointments,  monitoring my medication, bringing me water & reminding me to eat…. and generally functioning for two when I go vague.

It’s very easy to forget that your job is important too, probably moreso and that you’ve been working on my time schedule for the last half term (the last 6 years tbh) which impacts on your work. This is a very valid reason why the Christmas cards that I bent my fingers out of shape writing at the weekend are still sat on the footstool.

It’s very easy to forget that although we were sensible and went to Amazon for all the Christmas shopping, someone needs to unpack these boxes that are invading our bedroom, wrap them & hand them out, and invariably that’ll be you.

It’s not easy to forget that I need you. I don’t want to need you, I want to want you. Needing you puts me in an uncomfortably vulnerable position, but if I have to need someone,  I’m glad it’s you.

I’m sorry I’ve been an irrational psycho this week xx

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Vive La France!

*see below for English translation*

Je me suis rĂ©veillĂ© ce matin, Ă  un Ă©tat d’urgence Ă©tant dĂ©clarĂ©e en France. Il est trop Ă  comprendre, mais je l’espĂšre, que le peuple de France savent que les cƓurs ont Ă©tĂ© brisĂ©s Ă  travers le monde quand nous avons entendu de la perte insensĂ©e de leurs citoyens.

Ce matin, nous avons parlĂ© Ă  nos enfants terrifiĂ©s qui ne comprenaient pas pourquoi quelqu’un voudrait tuer des gens comme ça.

Le monde pourrait apprendre beaucoup de la sagesse d’un outragĂ© 9 ans:
“Je ne veux pas ĂȘtre musulman, je ne veux pas ĂȘtre chrĂ©tien non plus, mais cela ne me donne pas le droit de vous dire quoi faire ou de vous tuer parce que vous ĂȘtes diffĂ©rent.”

Comme nous Ă©tions en expliquant comment extrĂ©mistes travail en utilisant WW2 titre d’exemple, elle m’a dit “si elles vous tuĂ©s pour ĂȘtre handicapĂ©, je damagedly leur faire du mal!”.

Il ya tellement plus d’amour dans le monde que se trouve la haine. Et si vous lisez ceci, s’il vous plaĂźt aider Ă  rĂ©tablir l’Ă©quilibre un peu aujourd’hui en pratiquant un acte de bontĂ© au hasard. Il ne ramĂšnera pas les morts, mais montrant l’amour en leur nom les honore beaucoup plus que des reprĂ©sailles haineux.

Si vous avez besoin d’idĂ©es, s’il vous plaĂźt visitez le site Web Happsters.

Étaler un peu d’amour aujourd’hui.

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In English:

I woke up this morning to a state of emergency being declared in France. It’s too much to comprehend, but I hope that the people of France know that hearts were broken around the world when we heard of the senseless loss of their citizens.

This morning, we talked to our terrified children who didn’t understand why anyone would want to kill people like this.

The world could learn a lot from the wisdom of an outraged 9 year old:

“I don’t want to be Muslim,  I don’t want to be Christian either, but that doesn’t give me the right to tell you what to do or kill you because you’re different.”

As we were explaining how extremists work using WW2 as an example, she told me “if they killed you for being disabled, I’d damagedly hurt them!”.

There is so much more love in the world than there is hate. And if you are reading this, please help restore the balance a little bit today by practicing a random act of kindness. It won’t bring back the dead, but showing love in their name honours them far more than hateful retaliation.

If you need ideas, please visit The Happsters website.

Spread a little love today.

Stop Trying To Be Normal – Things My Daughters Teach Me

This is a bit of a follow up on yesterday’s rant with another classic IDS quote. I will however, do him the service of keeping his quote in context:

“I think the figure is now over 220,000, which I believe is the highest figure since records began, in proportionate terms, but the most important point is that we are looking to get that up to the level of normal, non-disabled people who are back in work. Those with disabilities have every right and every reason to expect exactly the same support into work that everybody else gets,”

So I’m not normal. What’s new?
I’ve been struggling with using the D word for a while and have been using my blog to test the water by dropping it into conversation here before I use it with the general populous.

But two conversations with and about my daughters have hit it home this week and left me wondering why I was so uptight about it.

TinyPants, who is now 9 and speaks her brilliant little mind as if she were running the country mentioned offhand to me that she’d “been talking about your disability at school to my teachers. They didn’t know you were disabled.”.
I tried fluffing it out saying well yes, Mummy is in pain and I do use the wheelchair, and sticks, and….

Then she looked me square in the face and said “You are disabled. Your body doesn’t work. You are my mum and you’re disabled. It’s a fact. Just like Best friend is my best fried and she’s Brazilian. What’s the problem with saying it?”

Um, nothing you blindingly insightful child. Bloody hell, never change.

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Cue cute picture of TinyPants with mega milkshake testing said best friend

Then we had parents evening for Beanpole. We had the usual are you aware that your nearly 11 year old is tackling GCSE papers? conversation. Yes, she’s also totally unaware of how clever she’s become  (This is a good thing) so she’s also working her socks off. Clever teacher. But the thing that struck me, and made me terribly proud of her was the gushing from her teacher of how great it is that she refuses to change to impress people. She sticks to her slightly oddball guns and does what she feels is right and makes her happy. Who cares if she loves dinosaurs and has read every book in the library, she is & looks how she wants to (within set parental limits), and figuratively sticks two fingers up to the crowd. Because of she literally did it, she’d be grounded forever.

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Less cute, more emo - only my oreo milkshake understands me.

So neither of my kids see the point in normality, nor do they see disability as not normal.

We are who we are. And I’m very proud of them for being better than me.

Exercising when your limbs keep trying to fall off.

Moving isn’t just good for the body, but good for the head too. And frankly, I’ve been a grumpy sod for the past week or so. So, on the back of having rested the whole day yesterday,  I insisted that we take the kids swimming at the local pool today.

It’ll be fine, I said. They have stairs into the pool, I said. I’ll feel better, I said.

So here it is in gif form….

Mr Geek wasn’t sure and was holding in all his internal fretting whilst the kids launched themselves bodily onto the giant pool inflatable.

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I was sat at the side, slightly annoyed as they’d taken out the steps I’d promised would be there. So once we’d discovered steps weren’t going back in, Mr Geek helped me off the crutches into a sat by the pool scenario and he lifted me into the water from there. (OK,  can I get an “awwwwwww!”). Once in, I realised that even standing on the floor was causing sciatica and knee pain, so I sat on my pool noodle and bobbed about like it was a floating throne.

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Once satisfied that I wasn’t going to fall off and drown  (I can swim, it just hurts), or try anything stupid like front crawl, Mr Geek went off to do a few lengths. I was left bobbing around kicking my legs around like a baby in one of those inflatable seat things (except my pool noodle is far cooler, and it takes core muscles of a god to balance! ). This was blissful. I was weightless & moving with only minor twingyness! Stuff started to ache after 1ish minutes, but not anything that indicated imminent death.

Then the kids wanted to move to the “fun pool”. We needed to get out. The life guard had suggested the lift that resembled one of those theme park grabbing machines. I’m not ready for those looks. Too much attention.

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So between me and Mr Geek he lifted me back out of the water onto my bum, then picked me up off the floor.

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Getting into the fun pool was easier (proper steps & much warmer), but because I was exhausted by now and the kids had buggered off to the slides, Mr Geek and I just hung about talking. Without me realising he had positioned me onto his leg and just held me in a sort of floaty position in the water. I was totally relaxed.

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Finally, the kids were done. Sadly, so was I and couldn’t actually walk back to the car, so Mr Geek helped me change and grabbed the chair from the car.

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As soon as we got home, I got (OK,  I was helped into) a hot bath & assessed the damage.

1 hour of happy floating = both knees complaining behind the patella, my right elbow popped back in (Getting out of pool 1 required me lifting myself), my right shoulder making weird noises & shooting pains down my arm and both wrists sore & crunching.

But I swear blind it was worth it for an hour of what felt like normal movement. That and hugging Mr Geek in a pool 🙂

A Weird Kind of Nostalgia

So, my mum and Dad look back on the 60s and 70s with fond (and rather squiffy) memories of Led Zepplin, Crosby Steele Nash & Young (yes, I know who they are!) and Camel.

And we have these.

1. This was is “our song”

2. One of the funniest support bands we saw. Zebrahead played this and encouraged the young teenagers to swear which appeared to be the best moment in their lives…

3. More dubious content, but this is the inner teenage boy making music about things teenage boys really do care about…

4. THIS was how I got seduced. It says a lot when your most romantic moments with your husband sound like Kung Fu Panda…

5. The happiest song of my early 20’s… It speaks volumes!

6. You know it’s love when he goes to see them in concert with his ex girlfriend because you’re just too pregnant to go. Not that I’m bitter. Much.

He told me it was rubbish to make me feel better. He lied.

7. Angry balloons made me happy. I still like the original…

8. I tried explaining this song to our kids, they looked at me like I was some sort of alien. I guess from their perspective our rebellion seems a bit naff.

9. The same goes for this. Although I have a feeling, it was a bit naff even when we liked it.

10. Final one. I guess it ought to be good? Something which sums up the younger years we spent together before we got grey (or greyer in LSH’s case) and slightly more responsible… Or this. We liked this.