/Liz’s Story – Stroke caused by antiphospholipid syndrome.

Liz’s Story – Stroke caused by antiphospholipid syndrome.

‘No triumph, no tragedy’, goes the title of Peter White’s excellent R4 show about disability.

I remember being struck by the phrase the first time I heard it.  You’ll never know what success is unless you first know disaster, it suggested, ‘Rudyard Kipling-like’.  But show me the person who says they knew that before they lived it and I’ll show you the naivety of the not-yet disabled.

You’ve got to pay for triumph before you can have it, and the ‘currency du jour’ is tragedy.  Few in life know that better than a stroke survivor.

When my dad was 64, he had an ischaemic stroke.   His dad carked it at the age of 40 (heart attack, probably another blood clot).  Don’t know anything about my Grandfather’s life but I bet he got migraines. So, does my dad.  So do I, all my life.

But my mother wasn’t the sort to entertain ill health.   Maybe because she lost her mother to a brain tumour when my mother was 25 so, imagining herself all ‘Nothern grit’, wouldn’t ‘stand for ill health’.   But you can’t chivvy people out of life-threatening conditions, mother, d’you see? Naïve fool.

A damaging childhood led to a mistake of a marriage in my late 20s.  I got out as soon as I realised the seriousness of the error but I was 38, April 2009, by the time I found myself pregnant with my first child.  In the July I had a miscarriage.

At the hospital: ‘We’re so sorry, but you must understand it happens (one raised eyebrow silently said ‘especially at your age, dear’.)  Here’s a leaflet, now off you pop to try again when you’re ready.’

August: up the duff again.  Hooray!

September 2009:  At the hospital after losing that one too: ‘We’re so sorry, but you must understand it happens.  Here’s a leaflet, now off you pop to try again when you’re ready.’

Me: Something’s wrong.

In-every-other-way-excellent partner: Well, maybe, but what can we do?

Me: No.  Something’s wrong.  I want help; I need to talk to someone.

Me to ridiculously costly private obgyn (obstetrics and gynecology) in late September: Something’s wrong.

Ridiculously costly private obgyn: We’re so sorry, but you must understand it happens.   Here’s a leaflet, now off you pop to try again when you’re ready, oh, and try not to inhale petrol fumes when you fill up the car. (I think that’s the slightly-different to the NHS observation I paid for).

Me to myself:  Something’s wrong.  And the truth is I now to seem to be the only one I can rely on for help.  But I’m not a clinician.

When I was pregnant for the 3rd time the following February, I insisted on a referral to an obgyn on the NHS, because this was the only thing I could cling to as a likely source of help.  We got hormone injections and a prescription of one baby aspirin a day; we got to 36 weeks and I started to claw my own skin off.

Back to the Obgyn: ‘Oh, it’s a liver problem, that kind of itching.  Nothing unusual.’

Me: Something’s really wrong.

Obgyn: ‘No, no, we see this quite often.  Here’s some cream to help with the itching.  Stop the aspirin next week and we’ll bring you in at 38 weeks to be induced’.

The cream did nothing.  I stopped taking the aspirin and on the Friday before the Monday of the inducement, the baby stopped moving.

But I’d read the books and wanted to believe this might not be sinister and we were due in the hospital on the Monday anyway, right?  He’ll be born then.  I just concentrated on that.

Now I want to reach back in time and slap myself repeatedly and hard around the face for being my mother’s child. You naïve fool, you not-yet disabled girl.  Get to the hospital, idiot-brain.  Now.

Monday rolls around.  We present ourselves to the hospital.  We get hooked to a baby-heart-rate monitor. After about 20 minutes a midwife scurries in then out again and is back almost immediately with a surgeon and some forms giving them ‘the right to remove your uterus if it will save your life, now sign here please, and hurry.

‘My thoughts while they’re administering the epidural go like this: I thought I’d never be in an operating theatre, this is surreal; look at all those signs on the wall; do they read them when they’re operating; surely they know all that stuff?    What if I get it wrong about the test-you-for-numbness freezing spray, will I feel them slicing me open?  I am definitely terrified and maybe that’s what paralyses me  because now the anaesthetist is frantically nodding, “OK,” and they’re lying me down and putting a screen over my stomach and then all I know is what it would feel like if someone decided to do the washing up in my lower abdomen and I hear ‘it’s a boy’.  Then nothing.

Shouldn’t there be crying?  Aren’t babies born crying?   Why is no-one talking to me?

The pause goes on.  And on.  Then someone hands the baby to his father so my first sight of him is only the top of his head. What does he look like?

Then it all blurs for a bit until I know am in the recovery room, with a thankfully squirming and oddly squashy-looking baby in my arms being told, ‘Samuel’s a nice name.’

Good god, he’s alive.  He’s mine.  I think there is a chance he will end up with a name I didn’t choose and don’t particularly like.  But I know that one of the names I had picked out belonged to a dark-haired child and well, this baby didn’t really have much hair and so he was, de facto, although I didn’t feel ready to choose, the other name I’d picked; Yannick.

And so he still is.  Nearly 8 now.  He is more Yannick than I ever knew I could have.

But he’ll never know me as anything other than the stroke survivor I became 6 weeks later.  You must forgive the long preamble to this account because the story of my stroke is inseparable from the story of the birth of my (fated to be only) child.  That’s because my stroke was caused by antiphospholipid syndrome, a lifelong, incurable autoimmune blood-clotting disorder, which kicked in with a vengeance after Yann was born and which wasn’t diagnosed for another two months, but which, looking back over my life, explains a lot.

Immediately after being born, Yann was revived form his barely-breathing state by some talented paediatricians.  The blood clots that caused the first two miscarriages had started again after I was told to stop taking the aspirin, reducing his oxygen.  No doctor ever said as much to me but I know he came as close as one can come to being stillborn and just another ‘it happens, dear, try again when you’re ready.’

But he made it.  The recovery ward that day was quiet, so two hours after birth, there was just me, Yann and Rob, who’d finally gone for a long-deferred wee.  Yann was in my left arm and a midwife was in and out, watching us.  Whilst Rob was in the loo, my left arm collapsed (first TIA) and Yann folded in half and went blue.  I could neither move nor speak.  I just remember feeling paralysed and there being no-one around apart from me and a freshly-delivered but now dying baby.

I don’t remember much in the moments after that, but I pulled myself round enough to register the absence of Yannick and the presence of Rob, saying ‘He’s been taken to Special Care’.  That night, “babyless” in a side room, surrounded by all the ‘newborn’ balloons and sounds of babies bonding with their families, I couldn’t get any sleep at all. There was a light they said they couldn’t switch off and I was so tired. So tired.

Now I knew for sure something was wrong.  Really and properly wrong.  I think it was the next day I was given labetalol for high blood pressure.  The medication lasted 8 days, but apart from that no-one asked me anything about what had happened or investigated at all. The TIA went undiagnosed.   After a few days they discharged me and Yannick was let out after 8 days.  We went home.

Eurgh, health visitors, midwives, the GP I was registered to.  No, I shouldn’t be listening to you.  You need to listen to me.

Something’s wrong.  I keep kind of ‘blanking’ and a few times, my eyes have gone completely out of focus, like I’m Tom the cat and Jerry, the mouse, just banged my head, like that, right, spinny?  I have some kind of post-operative infection, could the metronidazole be what’s making me dizzy and weak?  And tired, so tired?

No, dear, that’s normal.  Is your baby eating right?  Is he putting on weight?  Are you trying hard enough with breast-feeding? I can get you a counsellor for that you know.

Is it normal to be this tired?  Why can’t I sleep at all?  Why is my left arm so weak?  

Oh, you might have Post Natal Depression, dear.  Let us help you.

No, it’s not that. Something’s wrong.  No.  It’s not that.  No-one is going to help me.  And I no longer have a clue how to help myself.  I’m intimidated.

I’m going to have to let them admit me to this psychiatric unit they keep banging on about.  I don’t know what else to do.  But they’re wrong.  Now something is wrong AND someone is wrong about it.  But I am powerless and in despair now.

They give me something called olanzapine.  I start it on the Tuesday.  They up the dosage on the Saturday and that night, inevitably, it helps cause the stroke that nearly kills me.

Now with undiagnosed APS, I was in the queue for stroke anyway.  The TIAs by that stage had got to about 20 or 30, my neurologist later reckoned. But with the TIAs, the high blood pressure, the atrial fibrilation – olanzapine should never have been prescribed.  It shoved me, hard and fast, to the front of the queue and made the stroke significantly worse than otherwise it should have been.

Here’s what I remember of that night:  Rob saying he was going to talk to the doctor on the way out about the fact I was still totally unconvinced they were right about what was wrong with me, me listing to the left like a ship taking on water, then trying to sleep, being aware something in my head felt like it had just gone ‘bang’, the formless, subconscious but clear thought, ‘that’s it, then, whatever it is that was wrong has just happened.’

And on some level after that, yes, the, ‘am I dead?

I remember the ambulance.  I remember a few days later explaining to the insufficiently ashamed psychiatrist that if stroke wasn’t a cure for post-natal psychosis, that maybe she could now see she was wrong.

And apart from learning how to walk and talk clearly again, learning how to feed myself again, learning to be a parent, going back to work as planned 8 months later, learning how to manage my acquired disability around both those things, which there is no more room to relate here, that’s my story; at least, that’s the tragedy.  The triumph came later, much more slowly, infinitely harder to recognise but ultimately so much more significant and meaningful.  It happens any day I choose not to be defined by the past. Every day that I pass for ‘normal’.  Any day when I can get so absorbed in the things I like to do that I can forget I am anything but just me.

 

2018-10-11T15:47:05+00:00October 11th, 2018|Comments Off on Liz’s Story – Stroke caused by antiphospholipid syndrome.