After leaving hospital, we headed home, against my mum’s better judgement. She wanted me to stay with her and my dad so they could look after me. I was wrung out and just wanted my own bed. Friends reassured me that half the people who have a seizure never have another. It’s just one of those things. Who knows really how our bodies work? All of this reassurance was happily accepted. Elated not to have died, or have had a heart attack or stroke, a possible diagnosis of epilepsy seemed like a gift compared to what could have happened. Google said there were several different types of epilepsy, though none of the seizures described seemed like the one I’d had [which is why I’ve tried to describe it so much here, sorry], but no worries. It would all become clear, and it would all be absolutely fine.
The next day I felt much better. A bit stiff from the seizure, but the doctor had said it was the equivalent to a proper workout at the gym, so not surprising. I slept late and then showered around lunchtime. As I got dressed, I was fastening my bra, and…. my left hand curled up in to an immovable claw. The electric shocks began surging again. Luckily, I was standing close to the bed, so managed to angle myself in a way that meant I’d fall on to it once the paralysis reached my legs. Why I didn’t just sit down on the bed immediately I’m not sure.
When I came to or woke up, I was again unrefreshed and confused. More so today; finding myself lying on a pile of wet towels wearing only a badly fastened bra, I just thought ‘Blimey. I must *really* have needed a nap’. As with the day before, I got on with my work. Once finished, I wondered why I felt so weird, and slowly the memory of the second fit came back, at first as if it had been a dream, and then it solidified to the point where it was inescapable.
I dialled 999 again, and then called my parents. “It happened again” I said in a tiny voice to my dad, sounding and feeling like a scared small child.
Perhaps this seizure was worse, perhaps it was the cumulative effect of having two within 24 hours or perhaps it was what would happen over the next few days, but my memory of this period is really quite sketchy – I can’t remember anyone’s name from this day. My dad and two more lovely paramedics arrived, and took wonderful care of me. At casualty, another BabyDoc asked lots of questions. We all like to get the answers to questions right, and in this respect I thought I was doing a bang up job. Not so much.
BabyDoc 2: You fell to the ground because you passed out, or you passed out *after* you’d fallen?
BD2: *furrowed brow*. You’re sure? That’s…unusual. Did you lose control of your bladder?
Me: No! That’s a total win, isn’t it?
BD2: *more furrowing* Hmm. That’s weird. [In a proper epileptic fit that would make you black out, you’d lose control of all voluntary functions, so only selective loss is a bit strange. At the time I thought his youth meant he was unaware of the pride a middle aged lady with two kids takes in her pelvic floor]
Me: Please can I stay in hospital? I’m really scared of this happening again. It’s horrible.
BD2: No, no there’s no need. We’d be unnecessarily exposing you to the risks of a hospital stay for no good reason.
He left, and returned a little while later, to say that he and a consultant had reviewed the CT scan from the previous day and they had decided to admit me to await an MRI as there was an ‘unclear area’ on the CT. I’m not sure why the decided to review the scan, but at the time, I was so relieved to be allowed to stay that the implications of what he was saying didn’t even occur to me. I honestly thought he meant that the picture quality wasn’t very good and they just wanted a higher resolution image, without stopping to think why.
Having got my way, I was full of the joys of spring, joking with the phlebotomist who took my blood for the second time in two days that I was only here for the loyalty points. Top lols, eh?
We were moved to the Admissions suite, where people who have come to hospital via casualty are farmed out to the relevant wards as beds become available. It was like a clean, organised bedlam. Every patient had at least one relative or friend with them, so it was fairly crowded. Patients were being wheeled in and out by porters every few minutes. Someone put an egg sandwich in my lap. A pleasingly cynical nurse took some details whilst cursing under her breath at an annoying patient in the corner. I admired the panache of an old lady next to me who whipped out her Philishave and gave her impressive beard a quick strim in front of everyone.
Mum arrived with a bag of clothes for my stay. She had packed:
- 1 pair of my husband’s jeans
- 1 pair of my husband’s pants
- 1 pair of our daughter’s pants
- 0 pairs of my jeans
- 0 pairs of my pants
- a sports bra not seen for around 10 years and several sizes too small
- 1 pair of my pyjama bottoms (yay!)
- 0 pyjama tops
Bless her, she tried, and it can’t be easy to cobble together a usable set of someone else’s clothing from their house while you’re in a panic, but the sheer rubishness of that list still makes me laugh.
As I delved in the bag, looking for something, anything useful, my hand did the claw thing once more. “It’s happening again!” I shrieked. My mum ran to get help. My dad tried to hold my hand, which was almost exactly the wrong thing to do. It really magnified the electric shock feeling. Somehow I managed to shout “LET GO!” at him, probably much more forcefully than intended. This seizure was really mortifying. In addition to the pain, I was acutely aware of all the people around, looking on in horror as I made weird, uncontrollable noises, and jerked about in the high backed chair. Nurses and doctors appeared from all directions and moved me to the bed, put an oxygen mask on me and presumably did other things. I didn’t lose consciousness although my consciousness was definitely altered or impaired. I could hear and understand what the medical team were saying, but would have been hard pushed to reply. My memory of the fits is not linear, it kind of occurs in bursts of a lucid few seconds, followed by a blank.
One example of this weird type of consciousness is my left arm position. I distinctly remember seeing my hand and forearm in front of my face, as in figure 1. (I’m not wearing a horse bridle in that picture, I just can’t draw a circle). It felt as if my arm was straightened behind me, as in figure 2. According to my dad, who witnessed the whole thing, both arms were actually raised straight in front of me, like Superman about to take off, as in figure 3. He did say I was looking at my arm as if I hated it, though. As the fit subsided, cynical nurse turned to me and said “Now *that’s* how you make a consultant run. Well done!” I like cynical nurse. I didn’t like the harrowed looks on my parents’ faces.
Chucking a fit, especially an atypical fit in front of medical people suddenly makes them want to immediately give you drugs, which is A Very Good Thing. I was wheeled at some speed to the Monitoring Suite, where they keep a very close eye on you. FairlyGrownUpConsultant told us he’d put me on an anti-convulsant drug called Keppra. Both my dad and I misheard this as Capra, and asked “Like Frank?” in unison. Senses of humour must be genetic. FGUC just looked confused.
The initial, large ‘loading’ dose of Keppra was administered by IV, followed by twice daily oral doses. I couldn’t get it in to me quick enough, and tried to persuade FGUC to whack in a few extra doses for good measure. Somehow, superior pharmacological knowledge and medical ethics prevailed. Swizz.
Despite being wired up like a Christmas tree, with a nurse coming to take temperature, oxygen and blood pressure readings every half hour, I slept like you’d never think it possible to sleep in a hospital. Absolutely sparko.
Reasons to be grateful today:
- I didn’t piss myself!
- The NHS, again
- They’re looking after me. Everything is going to be OK
- They’re giving me drugs
- Everyone is lovely
- Still not dead, and apparently no chance of being dead
I love you, you are very marvellous indeed! Thank you for writing this. :0)
Gosh, thanks Lucy! x
I’m so sorry for what’s happening but I find this so interesting to read too.
Btw as an epileptic BD2 Is wrong, you dont piss yourself with every seizure 😉 😘
Ha ha! Excellent news. High five, lady. 😀
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