(Written on Tuesday 8th October)
One day you will find yourself in a situation and you won’t be able to believe it is really happening to you.
Hopefully yours will come when you’re riding an elephant or swimming with dolphins or perhaps when holding your very own baby in your arms.
I’ve had a few but by far my most unbelievable came 10 days ago, on a Monday afternoon when I found myself sat at home, on the toilet and unable to get up. A situation that I had dreaded happening to me at 80 was suddenly a reality at 28.
You see, the consultants prediction- that I hit my plateau 6 weeks ago turned out to be incorrect and as of 12 days ago I found myself steadily deteriorating.
First it was the stairs. They’d always been an issue but suddenly they loomed like everest, mocking me everytime I approached their summit in need of a pee. After 1 actual fall down them and a couple of near misses they began to represent something more than just an obstacle to stress-free toileting. They were the epitome of my absolute failure to live life as a ‘normal’ person and my body’s total non-compliance.
Still, I wasn’t defeated. Even when I had a panic attack on the top step and found myself hyperventilating into Chris’s arms. I didn’t realise I was having a panic attack, I thought I was dying. I thought the Guillan Barre had finally got to my respiratory muscles and that I was done for. Chris, on the other hand with his experience and objectivity, could tell tdespite my protestations that I “couldn’t breathe” that I was in fact hyperventilating, and certainly the tingly lips and dizziness that followed supported his theory. Even then, I wasn’t defeated- afterall, there was always 1-storey living. Bungalows became my obsession.
On Thursday morning I collapsed in a heap on the bedroom floor on my way back from the bathroon. Chris was walking with me at the time, having already lifted me out of bed to go to the toilet, walked me there, waited outside the door for me and then lifted me off when I was done. Even with all that I still couldn’t manage. I still wasn’t safe at home. And that’s when I had to admit defeat and return to hospital.
Unlike my last A&E experience- 9 hours of nonsense without so much as a glass of water, Thursday was positively efficient in comparison. 30 minutes to be triaged, about an hour in a cubicle in minors and then 2.5 hrs in a room in “ambers”, most of which was spent undergoing the most thorough neurological exam I have had since my Guillan Barre journey began.
A lovely, perhaps slightly stressed, junior medical Dr ascertained that overall I was in fairly shitty shape. Not that he used those words as he was about as ‘proper’ as you can get without being a fictional character. Maybe it’s just me but I find it reassuring to be under the care of someone who speaks the Queen’s English. Perhaps it’s the assumption that if someone takes so much care to enunciate properly then they’ll be equally as attentive when it comes to my medical care. I don’t know.
In any case, I had absent reflexes, couldn’t distinguish between blunt and sharp touch, couldn’t raise my left leg off the bed, couldn’t raise my arms to 90 degrees when bent, couldn’t touch my finger from my nose to the Drs finger with any speed or accuracy, couldn’t stand or walk. Like I said, pretty shitty.
Unsurprisingly I was admitted but with no clear plan other than CONSULT NEUROLOGY.
If I’d thought needing to be lifted off the toilet by my boyfriend was to be my lowest point, I was sorely mistaken, as Friday night confirmed when a sit to stand from the toilet turned into more of a sit (on the toilet) to a sit (on the floor). Not a fall exactly so much as a drop. 2 support workers were ‘helping’ me at the time but genuinely weighed about as much as I do combined so it’s hardly surprising it ended badly because: PHYSICS.
Fortunately my nurse for the night was of a more useful physique and after checking that I wouldn’t mind him coming in to help, he lifted me off the floor like it was something to which he was accustomed to doing several times a day and no longer gave a second thought and then apologised for hurting my armpits.
If my feelings when stuck on the toilet at home were shock, horror and disbelief then by Friday when being scooped off a dirty hospital bathroom floor by a total stranger with my pyjamas around my knees my feeling was pretty much numb gratitude.
You see at home I’d been in denial- no I don’t have GBS, there’s been some kind of mistake, let’s try to continue as normal and pretend this isn’t hapening. Then, when it WAS happening and I genuinely could not get up I was angry- no no no No! This isn’t part of my plan! I was frustrated and heartbroken.
By the time I was an inpatient again I’d reached something like acceptance- shit, this really Is happening and it’s happening NOW and TO ME and I’d stopped fighting against the inevitable and accepted that, no matter how much I hated it there were things I couldn’t do. Things I’d never dreamed I’d need help with but that I now did.
My frustration multiplied but was sidelined by fear. Terror actually. I made a pact with myself that Ok, I would accept that this was happening and that I need help but only if it wasn’t going to be forever.