Living with cataplexy … It won’t kill me unless I laugh and fall in front of a bus!

Have I ever told you I have Cataplexy? When I try to explain to people what it is , it usually goes along these lines…

“You have cataplexy ? Eh … What’s that?”

Me ” its a brain / muscle disorder”

“Eh? What ”

Me “Basically … and without getting too technical – extreme emotion, sadness, happiness, anger can lead me to fall down. My left side gives way, my head slumps. I look odd for a few seconds as I really can’t keep my head up-right or keep my eyes open. I look awfully attractive ! ”

The usual reply while partly laughing “Gi’over … What is it really??!! ”

It must be about 10 years ago that I was sat at my friend Carol’s house. The horrific moment is set in stone in my memory! They had just treated themselves to a new cream carpet and settee. I was perched on the settee with a big glass of red wine in hand. You can image the rest, only it wasn’t that straight forward – as I tried to explain to my host ! My left arm had in all seriousness suddenly acquired a life of it’s own and flipped sending bloody red wine everywhere. She looked at me and smiled through gritted teeth with the annoyed ‘shurrup your just pissed face’ while scrubbing away at her not so cream carpet!

Although I wasn’t aware at the time that was the start of my cataplexy . It took numerous doctors visits and 18 long months to get diagnosed, but we did eventually get there.

On my first visit and as I explained my symptoms, I swear my doctor turned around and started laughing before composing himself and proceeding to tap all my joints with his little hammer. I suppose it does sound totally bizarre when you say it out loud .
Perhaps he didn’t know what else to do. Tap away it was then.

Eventually on my third visit to the doctors and as he got his little hammer out again ( I can confirm that I have amazing reflex’s) I thought enoughs enough and asked him to refer me to a specialist. My random floppy arm had spread to my leg; basically my symptoms had got a lot worse. I was convinced I had a tumour or something along those lines. Something had to be causing my body to act so weirdly?!

It didn’t take long to get an appointment and a couple of weeks later I was sat in Thornbury Hospitals neurology department, waiting to see my specialist.

As I explained my various ailments to him he didn’t laugh, he remained quite straight-faced. He did get his bloody little hammer out and proceed to tap my knee joints! He asked a few questions before advising me that he was 95% sure I had cataplexy. He reassured me not to be scared , but rather that I go home and read up on it. He proceeded to book me in for an MRI scan just to be sure.

The MRI scan (was awful) confirmed that yes I did have Cataplexy. The relief that I didn’t have a tumour or anything as sinister was a big relief but how would cataplexy effect me ?!

The official word on cataplexy goes like this …

‘Cataplexy is an episode of muscular weakness triggered by strong emotions such as laughter, anger and surprise. The loss of muscle tone ranges from a just-perceptible weakening of the facial muscles through weakness at the knees, to total collapse on the floor. Speech is slurred, eyesight impaired (double vision, inability to focus) but hearing and awareness remain undisturbed. Attacks often last less than 2 minutes and they may only last a few seconds. Some people have repeated attacks of cataplexy which persist for up to 30 minutes. During both mild and severe the patient is fully conscious’

It sounds delightful doesn’t it!

My mum always laughs and says if anybody was going to get such a weird ailment it would be me!

Life is more or less pretty normal. Well rather, those close to me are aware of my condition and are prepared . Should I laugh or cry and start to slump they initially grab my drink (typical Sheffield ladies) followed by my arm to make sure I don’t end up on the floor. Luckily I have only ended up on there twice , both in the safety of my mum and dad’s kitchen. We laughed so hard that non of us could move !!

I can’t tell jokes anymore, though to be honest I was never very good. I never quite reach the punch line because I’m flopping and grabbing at walls trying to remain upright !!

Dates is a tricky one . I could sit and explain my condition ; sound like a fruit bat? Or I could leave it and let them witness ‘it’ for themselves. Despite one of my friends offering to video me having an episode – I have never taken them up or seen myself have an attack . I don’t think I would want too either. I can image it must be a potential shock if your not aware. I mean come on… Suppose I meet someone and we get to the first kiss stage. Suppose I come over all emotional or giggly .Oh oh. My head would start to droop, my eyes would get heavy and potentially close. My left side would go weak and I’d start to collapse ! I could end up a big heap on the floor! Hardly the stuff of dreams. Poor bloke would wonder what the hell was happening.

I can laugh because I’m quite frankly
laughing at myself and because most importantly it isn’t life threatening. (Unless you make me laugh and I fall in front of a bus) It could have been a whole lot worse . It has made for some funny stories over the years and it gives my friends and family a giggle.

Living with cataplexy is frustrating at times but nothing I can’t cope with. Infact I can’t remember what it was like to be normal? A time when I didn’t have to grab a wall to remain upright. A time when I was allowed to sit on new cream settees!

Until next time , Tracey x

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