Actually all Around

Image result for love actually
picture pinched from:  Love Actually

Modern medicine (and the NHS) enable many survivors of brain injury and psychological disease to lead surprisingly normal lives.  The doctors sound cautiously positive about mine.

But meanwhile it’s hard, as I told everyone over Christmas.  And I do mean everyone: extended family, friends (I can’t thank you guys enough),  teachers at school, innocents out for a jog, the pub waiter, a librarian…

I’m trying out new labels, you see.  I’ve stepped outside the satisfying ‘good veterinary surgeon’ box, outside the ‘contributing family member’ box and occasionally outside the ‘good parent’ one.  And given that the confusion isn’t going to improve overnight or kill me, ‘confused’ and ‘ill’ are suddenly my identity.

How insulting!  Because I’m not ill!  Other patients in hospital needed frames to walk or ate only mushy food, but not me!

An older guy in neuro rehab explained  that he wasn’t an ‘ill person’ either, although he looked it from where I sat.  We talked about our respective careers;  he was a scientist and his research sounded – clever.  And lifesaving.

The mother in the next bed (post car-crash) was a nurse.  And even the nurses on duty had lives outside that place.  And two of them were Type 1 diabetic.

Nobody is just an ‘ill person,’ or a ‘nurse’ or a ‘relative,’ you see.  Nobody is just here to be an extra in a two-dimensional film of my diabetic life.  Ill people have lives and achievements;  hospital staff get ill;  at the time this was an epiphany.

Then came epiphany number two – that a lot of the useful, active ‘normal’ people I know in real life are actually ill-people too.  I’ve lost count of how many friends and family reminded me that they are struggling with something;  illnesses such as chronic fatigue, depression, arthritis, diabetes, anorexia, heart disease; cancer.  But we are not our illness any more than we are our sexuality or nationality or race;  we are people.

Which brings me to one person in particular;  a family friend, known in our household for her sharp wit, wry observations, formidable intelligence and good advice.  She says that she can only recommend endurance and sends me knitting materials;  I don’t know if she’d heard about the trouble I’ve had knitting an elephant, but the wool is beautiful and the note accompanying it recommends that I start with scarves.

She is pleased when I tell her that I’d forgotten she was ill;  like me, she doesn’t want her illness to be her defining characteristic.

But neither does she trivialise it:  survivors of illness aren’t just the superficial feel-good stories you find in crappy newspapers:  ‘I beat such-a-disease, by being positive every day.’   Illness and disability can be isolating and difficult;  frustrating and maddening to live with, as at least some people reading this will know.  It’s ridiculous to expect anyone – but most of all ourselves – to be high achieving, super-strong and invincible in such situations.

I’m afraid I cant remember her words, but I have taken inspiration.  Enjoy what you can do, and be nice to people;  I am enjoying knitting this scarf.  I am also running, doing yoga and watching DVDs.   My scarf is growing and I’ve seen Love Actually a record number of times this Christmas.  I cry for the wee boy at his mothers funeral every single time.

And that brings us nicely back to the subject of illness.  Illness is – actually – all around.  But the good news is, that so are tools to help us:  strength, humanity and…..

Love.

 

 

 

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Bionic Liz

Two days ago, I went to the hospital with my glucometer, thus:

 

blood

http://www.health.com/health/gallery/0,,20469215,00.html

 

and walked out with a constant glucose monitor.  This magic device measures my blood sugar not five or six times a day, but all day long, every few minutes.  It also draws a graph:

 

dexcom

Image: http://www.mynewsdesk.com/uk/dexcom-europe/images/dexcom-g5-call-outs-mmol-465096

An alarm goes off if my sugar is about to go too high or too low, and when I check back I can see exactly when (and therefore why) it happened.

Even better, the electronics taped to my abdomen are conveniently small:

IMG_6479 (1)

 

It’s the technology, not the tummy, that’s up for discussion by the way.  The CGM (that checks my glucose all day) is on the left.  It has a short, palsticky tip that goes under my skin.  The tube on the right’s from the pump, that constantly puts insulin in.  I am a middle-woman between them – I check the trace and tell the pump what I’ve eaten (so that it can work out how fast to pump).  It helps to cut the guess-work:  rather than an isolated number (my blood sugar is 5.6) there’s a trend arrow on the phone app. (and stable / climbing slowly / falling fast).  Thus I can see what effect my activity and food are having in real-time and what to eat, or what insulin to take, to keep it stable.  Even if I’m not watching the trace (and why wouldn’t I be? – it’s fascinating) the alarms should minimize the chances of me hypoing ….

On one level this is very exciting.  On the down-side, it’s hard to shake off the idea that I no longer exist on my own.  I feel slightly like a lab-rat, wired up to lots of equipment, which I ‘need’;  if there was a big natural or political disaster, I’d be scrabbling to get hold of insulin, but also my pump, oodles more bits of specialised plastic and my phone.  The complexity of my requirements is ever increasing….. there is no doubt that I’d be dead in the natural world.

And then there is the more immediate problem:  remembering how to use the thing.  I can say, with my fingers tightly crossed, that the phone app. is intuitive.  I can only hope that I have instructions for changing the sensor extremely carefully written down…..

 

The Trouble with Humans

Sure, there are other species with impressive intelligence:  David Attenborough recently demonstrated an octopus using tools.

But not as clever as us:  the octopus couldn’t have made a film.  They don’t teach that in Octopus Elementary School.

Humans, you see, are unbelievably clever.  But we are undoubtedly stupid, too.  Our cleverest people can show, beyond reasonable doubt, that climate change is escalating.  We can use our technology to transmit this information around the world.  And yet….

(INTERRUPTION TO WHISPER: I’ll say something happy soon.

 Meanwhile, I DARE you not to go:  ‘Oh Gawd, climate change,’ and click the cross at the top of the screen.

Although, it’s tempting to click away, isn’t it?  I’ve taken to switching Blue Planet off before the end, so I miss the bit when Sir David makes me feel very sad.

Instead, I convince myself ‘it won’t really happen,’

Or ‘I can’t do anything about it’ (although,  if we got together, we could)

Or:  ‘My current life is more important,’ which is obviously bollocks too.  Because we can’t really live without Oxygen on Earth, can we…?

But wait! – I promised to change the subject.

To another splendid issue that no-one wants to talk about:  the decline of our own bodies.  More immediate than Climate Apocalypse (I hope so, anyway) and trickier to lay at the feet of Donald Trump.  Our bodies are as vital to our personal survival as the Earth, yet we are programmed to abuse those too.   

I blame Evolution, myself.  Evolution’s too damned slow.  We have evolved to seek high-energy food when the opposite would be more useful.  In fact, evolution is barely happening at all, thanks to our healthcare; folk like me with bodies that would naturally be incompatible with life (placenta previa, Type 1 diabetes), are managing to pass our (otherwise obviously awesome) genes on.

Our primitive brains still crave the old advantages: children, food, comfort, nice things and group status.  And though we are clever enough to understand intellectually that we are ruining our bodies / world if we keep doing what we’re doing, our primitive brain hasn’t managed to keep up.

We crave the good life so much that we don’t stop doing it. Is it a hopeless business?  If we won’t listen to the experts to override our instincts to improve the health of our own bodies, I wonder if we will ever listen about saving the Earth.

And that’s why climate deals are one of the most important issues in the world, you see:  individuals desperately need forcing to comply.

Solutions on a post-card, meanwhile normal, happy posts will resume in the New Year.

PLEASE do your personal best with both the climate and your personal health this Christmas.

A very bloody Merry One to You.

Image result for amazing christmas octopus

 

https://www.google.co.uk/search?q=amazing+christmas+octopus&safe=off&dcr=0&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjroZi1w4XYAhWGDcAKHZ8YBbgQ_AUICigB&biw=1366&bih=613#imgrc=3mT7-VFqEShk3M:

 

 

 

 

Another Percy

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The Percy Pud, our local 10K, is popular;  finishers get seasonal desert.  I’ve blogged about it previously, but didn’t enter this year, being ill.

I had been out of hospital for a few weeks, when the Facebook market in second-hand places began.

The race, apparently, was tomorrow.

Gulp.  But hey – I probably could….

‘I’m sure you can,’ hubby agreed, ‘But I’m not sure you can navigate to the start.’

‘Course I can.’

Sounds simple, no?  Its not very far from our house.  Route to start-line into phone;  phone on charge.  Full running kit; write list; check eighty times.  Then I got something in my eye.  It itched like hell.  I fell to sleep with the ball of one hand pushing against my eyeball.

The next morning, my eye was glued to my palm with green slime.  My sclera looked disgusting, but the pain had gone.

I decided not to run.  I strode up and down for ages, trying to decide for definite, and decided not to run again.  Then I changed my mind.  Hunted round the house, checked everything I needed eighty times more, worried about the route.  Picked up the phone, squinted at it, started walking.  This was tricky:  the run was no-where near where I’d remembered.  But I merged with a parade of walking runners, some in costume, and followed them.  We came to a standstill outside a marquee.  I left my fleece by the third tent-pole to the left of the entrance, and wrote that down.

Then I looked at the sea of runners.  There were things happening everywhere – an overwhelming Where’s Wally? scene.  Suddenly, I couldn’t work out what to do next.

Someone explained that I have a clever sort of chip – on the back of my number, see? – and that I needed to wear the number;  ask in the tent for pins.

‘Right.  Thankyou.’

To the pin-person:  ‘Where’s the start?’

‘There.’

‘Where exactly?’

‘You stand next to the marker for the time you think you’ll run.’

Oh yeah!  I knew that, didn’t I!  But – How long does it take me to run 10K?????????

I didn’t ask that.  I’m forgetful, not stupid.  I looked back on Facebook at guessed an hour.  The people standing around me didn’t look intimidatingly fit.  In fact, they didn’t even look intimidating.  Okay, then.  I walked forward.  55 minutes.

There were some awesome costumes, but I can’t remember now what they were.  At some cue, the crowd began to shuffle.

Last time, running was the hard part.  This time, it was the part I knew how to do:  run.  Stay with the marker.  It was getting uncomfortable but it wouldn’t be forever.  After a very long time, we were on the home downhill.  With energy to speed up! – smugness.

The cheesy brass band made me feel quite elated.  I even remembered where to pick up my stuff.  But – oh shit – how was I meant to get home?

The story doesn’t end brilliantly.  Hubby and I found each other.  We were meeting family at the sculpture park.  The kids sang loudly in the car.  The conjunctivitis got worse and I got grumpy.  I lasted half the day with my family, then went for a rest in the car again.

Except – I didn’t make the car.  I’d bloody forgotten where we’d parked.  I wandered round lost for a while, then, after what seemed like hours, bumped back into the family, even shorter-tempered than before.

But let’s not focus on that.

A message came.  I’d done the Percy Pud in about fifty-seven minutes.  Better than last year, apparently.

Small victories.

pud2

 

Being More…..

 

“Remember:  the buzz-word is ‘moderation’,” one of my nurses said on discharge.

Moderation?  Really?  Not my kind of buzz-word it’s not.

Moderate people are not bright or stupid, tall or short.  They’re not sarcastic, laughably polite, or known for their interesting facial expression.  Moderate people don’t get carried away with mad ideas to change the world.  They wouldn’t make big romantic gestures, or spend whole weekends having sex.  Not that I’d want a weekend of sex with a ‘moderate’ person.  It’s the slightly immoderate characteristics that make a person shine.

I went for a run on my own.  The freedom made me ecstatic.  I ran with abandon until I could suck no more air into my lungs.  I was soon too knackered to continue, and less than a mile from home.

A friend later reminded me that real runners go slowly, which is how they keep moving.  I tried it and it worked.  When I finally remembered to turn around and go back, I’d already gone far too far..

Perhaps it’s better to run with someone.  I can go much slower and get further with a friend.  Eventually, the plan starts working:  and when you forget everything you don’t run out of conversation.

run

http://www.justrunlah.com/

 

Regulating my yoga-practice presents similar challenges.  One night in a back-room at the rehab centre, I suddenly clocked that I’d missed dinner doing sun-salutes.  My body was sore and my sugar rock bottom.

Next time, I followed an online class.  Until Lesley Fightmaster said lightly:  ‘you can take a downward dog instead, if that’s too big a stretch.’  She obviously didn’t intend the poor memory-less sucker watching it to feel patronized, pause the tape and practice ‘just one more time,’ and then again several times more because they forgot to stop.   I forgot to repeat it quite so much on the other side, and ended up hypoglycaemic and particularly tight in just one ass-cheek.

Hubby found us a real-life class.  It’s full of people older than us, and includes boring things like sitting properly, warming up and mindful breathing.  When you’re in a class, you can’t skip the boring bits.  You pay attention to your breath, just like they tell you to.  I’d forgotten that yoga was supposed to be relaxing.  The class gives me tightness in all the right places, and a kind of happy, yogic glow.

So moderate exercise is achievable.  Now:  what about parenting?  Tiddler’s homework was to make a model animal.  We had toilet-roll tubes, small boxes and brown and yellow paint.

‘Look!’  I showed him.  ‘What animal can we make?’

‘A dinosaur!’

Not what I’d had in mind, but I had sudden inspiration for a fabulous dino- tail.

Tiddler had a different plan.

‘But that’s rubbish,’ I told him.  ‘Look.  Brachysaurus was actually shaped like this….’

This ‘discussion’ went on awhile.  It got louder and climaxed with Mummy at the top of her voice, like a – well, like a Toddler, actually.  Then I went to bed thoroughly ashamed of myself, for not having had the mental agility to back down.

‘Are you going to read your reading book?’ I asked him another time.

‘No!’

Yes!’  I said, and he read it very well.

‘Now,’ I said, ‘You got a word wrong there.  Will you read that word for me again?’

Tiddler did, and got it right.

‘Good.  No, let’s go from – (shit, I’ve forgotten where we’re up to) – from the top of the first page?’

That’s when he kicked the book from out of my hands.

Overkill with everything:  perhaps that’s how Mummy’s going to be from now on.  People with strong opinions and poor mental flexibility annoy me:  I must equally annoy other people now.

There’s a way to deal with it, however.  I think I’m going to have to be quite kind to myself, you know?  Maybe – just floating an idea here – take some rests.  Not push myself too hard.  Look for moderate options, or something like that.

Moderate options.  Moderation.  Yes:  I think that’s it.

Moderation.  It can be my new buzz-word.

 

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Forgetting Myself

What don’t you appreciate, unless it breaks down?

State education; the NHS; civil rights;  security; the ability to do our thing without some nutter shooting us.  That we can reveal our legs / hair / sexuality;  practice our religion;  swear in the street;  express our views; go to work without being groped.

These basics aren’t as reliable as they should be.  Not even in Britain, where we are ‘lucky.’  Not even in 2017, ‘modern times.’

This is the story of losing something else that I should have appreciated more.

Unaccountably, I was in Hospital.  Someone explained the situation to me, but a few hours later, I woke to find myself in hospital again.  I was just as surprised, because I’d forgotten waking up there the first time.  It happened again, and again, and again- until some of it started to stick:  I was in Hospital – in Bedford, actually (I didn’t need to remember that – it was helpfully printed on the sheets).

I didn’t know why I was there, so I kept asking.  They said I had some memory loss.  I asked them if they were sure.  So they asked me who the Prime Minister was, and the month and year.  I was wrong about both, but named some of the cranial nerves.  Then I went to sleep for a bit and woke up bewildered as before.

 

confused

 

Over time – weeks – I became able to understand that I’d lost my short-term memory.  I still knew my friends and family.  I could still talk.  The nurses wished I couldn’t, because I repeatedly initiated the same conversations with them about differential diagnoses, worried I had a brain tumour because they’d ordered an MRI.  Afterwards, I kept forgetting that they’d given tumours the all-clear, and then they decided to order another (more detailed) brain-scan and we went through the whole process again.  ‘Don’t worry,’ they told me, smiling.  ‘Just keep asking.’

So I did.

I still can’t remember the name of the lady in the bed opposite, but I tried to learn it every day.  It was hard to decipher her speech so we wrote notes; I could look back at these for reference.  I started trying to write everything down:  names, diagnoses, news events, recent political history and, especially once I’d been moved to a hospital nearer home, my visitors’ news.  We’d been visiting good friends in Bedford and they were amongst many lovely people who bent over backwards to help us in this period.  I was later gutted to realise that I’d forgotten a years worth of their news.  They were married!  And that’s not all:  other friends had more kids than I’d thought.  A low point was asking a neighbour after his wife.  I think I was at her funeral.

Even with visitors, I kept forgetting to thank people for things but repeating the same news over and over again.  Someone else’s visitor said she’d once worked with my husband in an office:  I refused to take her number because my husband’s a climbing guide, but later I remembered she was right and that I’ve missed the chance to put them in touch.  En route to Sheffield, my wedding necklace came loose and  I refused to let the ambulance guy look after it. Or at least thats what I think happened; several weeks later, I realised I didn’t have it on any more.

I tried to record visits and conversations; to cram my friends’ histories, love-lives and secrets back into my head.  I tried to remember news events;  what I’d had for dinner.  I couldn’t reliably hold on to any of these things, and spent a lot of time in tears.  One day I realized how exhausting all this was and tried to let go of the compulsion to know everything I ‘should’ know.  Another day, I had the same thought and this time managed to write it down.

My glucose control in hospital was terrible, because it was hard to remember what I’d eaten and whether I’d had my insulin.  The doctors wanted to take me off my amazing pump in favour of a system they understood.  I fought them about that until they ran out of diagnostic tests, sighed and moved me on to neurological rehabilitation.

I must have been the most able-bodied person in rehab, but it took weeks to learn the route between the toilet and my bed.  The rehab centre had a garden, and they found me a yoga space, and thanks to books and You-tube I started remembering what to do.  It was a relief after weeks of a hospital bed, not allowed to do physical activities and unable to do cerebral ones.

Actually, that’s not entirely true: you don’t need memory for jigsaws – in fact, to my surprise, I enjoyed them.  I also rewatched films I’d seen before, and remembered the plot.  I  became able to read novels I knew well in one sitting.  This was best done at night, because I’d get lost if I was interrupted.

But now, I also did craft with therapists, sang with musicians, painted bad pictures and wrote tired inspirational quotations on them.  I cried- a lot – after seeing a psychologist, who told me simply that it was okay to be sad.  Losing your memory is distressing, especially when you forgot the fact you’ve lost it and have to relearn the whole trauma several times again.

After that, there was no more they could do to help me, really.  They reckon I might get better, and might even go back to work in a year. Whatever happens, you can read about it here, because a friend reminded me about this blog.  Welcome back, every body and if you haven’t enjoyed it, just be grateful that you can remember it so you won’t be clicking on it again.

 

A Novel Question

 

 

My novel question is this:  why admit to trying to write one?

Why confess to spending hours in a head all by yourself, obsessing over things that aren’t real and trying to write them down?

The vast majority of novels are barely read;  people who write them must be egotists. How else do they persuade themselves for thousands of words to keep writing; that their work is good enough to finish the thing?  There lies, perhaps, a barely distinguishable line between someone with confidence in their outstanding abilities (like JK Rowling), and someone sad, deluded and hopelessly over-committed (like me?).

Yes- that’s right.  Deluded!  I nearly fell off my unicorn at the thought.  Honestly though:  why admit to trying?  Who wants to publicly end up like the woman who wrote this?

https://www.theguardian.com/lifeandstyle/2017/apr/01/what-im-really-thinking-the-failed-novelist

In the beginning, I decided not to answer such pivotal questions.  Sidestepping is easy:

–   *surprised look*  – ‘But I’m not trying to write a novel

–  ‘You’re not?’

–   ‘No.  i’m just writing a story.  For fun.  Just for me.’

It’s a great line.  It re-frames the whole idea:  suddenly, I am not some desparado bent on creating a masterpiece, but someone who sits there for hours rearranging the structure of a few sentences because it gives them mental satisfaction.  Readers?  Smeaders.

Reputation intact then.  But is it true?

Who cares?  I used it anyway.  I used it when I started to ask my friends about stuff I didn’t understand.  If they smiled to themselves, I didn’t notice across cyberspace.  I just appreciated it that they helped me out.

In fact, I grew in confidence until I stuck a few of them in a Facebook group, and even sometimes picked up the phone.  I found myself having all sorts of hypothetical conversations with this generous expert gang.

So then I got brave and contacted Sheffield University.  I told them I was a writer doing research: technically true, because I write.  They invited me in and were nice to me and showed me their department.  I went out feeling as though I’d been right to go there and was a step closer to my goal.

Nearly a year later, I’ve finished the first draft of my 110,000 word ‘story.’   Unable to contain myself, I Face-booked that I’d just written a novel.

Then I read it back and gulped.  When had that happened?  Was ‘novel’ actually my word for it now?  It must have crept in steadily over the course of a year;  I’ve become one of those weird egotists after all.  A potential delusional being who likes to spend all evening with her lap-top.  I felt as though, in using the n-word, I had just laid myself bare.

I was still sitting blinking, when a strange thing happened:   ‘likes’ started pinging in.

In fact, people were saying positive things.  Quite a few who’d enjoyed the blog even asked to read it, which made me happy.  Then I thought:  ‘Not yet.  I’ve got to make it as good as I can get it, first.’

So I’ve nonchalantly sent it to a very few (well, two) trusted people, to try and flag up the story’s main problems.  Nonchalance is a must:  I’m obviously not on tenterhooks to learn whether my perception of the current draft’s problems is anywhere consistent with theirs.  I don’t want to put them under any pressure, other than to be honest and tell me every tiny bit that is shit; not to give it praise it doesn’t merit.  I know everyone says that, but it’s true.  I want to know how to make it better, after all.

Anyway, where was I?  Nonchalant.  Yes.  I nonched home from printing and posting out the snail-mail copy, then nonchalantly sat down.  Hubby looked over at me and said mildly, ‘So your sent it second class, I take it?’

Well, obviously – er – I mean, no.

But there’s no point in being ashamed, I suppose.  I’ve put more hours of my life into that than my career for the past year.  I am a person who has invested hours in hoping that I might write something that someone might want to read.  One day.  After some small improvements.  Possibly.  And then, I’ll let it loose on someone.  Somewhere.

So yes.  I am presumptuous.  I am weird.  I am possibly delusional.  I am, after all, an unpublished novelist.  And what’s really weird about it is that I am actually okay with that fact.

Only since I started using the N-word, I have realized that I am not as much as an out-lier as I thought.  Did you know that Sheffield has a novel-off, where people read out bits of their novels in a competition a bit like the X-factor?

In the library, I found out that there’s a group, with other people, all trying to write novels, too!  They are probably human, because they meet in a pub.  I might slink in there one day, and join in.

Before-hand, I’m going to do a recce though.  I’m only going in if there’s a ring on the wall outside, that I can tether my unicorn to.