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An eventful day in A+E and MAU

May 31, 2011

6.30 on Sunday and I clambered out of bed and made my way to the bathroom, in the few seconds that it took to return to my bed, the tingling in the legs started and by the time I had laid down, my body had entered a full cramped spasm attack yet again. I remember thinking, as I laid there in agony waiting for the paramedic to arrive that perhaps my red stripy boxers weren’t the best choice (although I’m sure they’ve witnessed much worse).

Its the first time I’ve had a seizure whilst being practically naked and the friction of my legs frantically rubbing against the bed sheets was starting to burn my feet (I’m sure Ray Mears could have harnessed the power to start a camp fire…) but fortunately the Paramedic arrived and used yet another cannula and more Diazepam.

8:00 and we were in the ambulance on the way to A+E again, and after a discussion with the Doctor, he decided to admit me to MAU (Medical Assessment Unit). 12:30 and a bed became free on MAU and off I went to sit bored stiff in new surroundings.

We were supposed to be having a joint Birthday BBQ that day (My two brothers and I were all born in May) and we had family coming for the afternoon/evening, so I told Mum and Dad to leave and get home so they could sort stuff out. I continued to sit and wait, I had already counted the tiles on the ceiling, learned the alphabet back to front and was currently reciting my 12 times table, when the Doctor visited me about 15:45.

She had read my letter which I’d sent previously to Professor Mathias, so was already clued up on how I was feeling/what I am suffering with etc. After the usual head to toe examination, we discussed the fact that there wasn’t anything they could do for me, and admitting me to hospital wouldn’t really achieve anything, because London is the only place with the answers. I asked her what I should do in the event of another seizure, and stressed my concerns about getting addicted to the Diazepam, so she said she’d speak to the head Doctor and see what she recommended.

An hour later, having watched someone buff the floor with one of those machines, I sat transfixed on the tree blowing in the wind outside the window (I know, exciting stuff; I really should start that diary) as the nurse passed by.

“How you doing Liam?”

“Me?.. I’m thoroughly enjoying myself”.

Shortly after, the Head Doctor and her juniors turned up and she started asking questions.

“Can you explain to me what happened today?”

“Yes, I went to the bathroom this morning, got the tingling in my legs, made it back to my bed, laid down and the usual fitting started”. I’ve now got the facts down to the shortest possible sentence.

“So you collapsed?” she said.

“No… i got back to my bed and laid down..?” me now thinking that she’s not really listening to what i just said.

“Right… and were you dizzy at any point?”

“Dizzy?… I’ve been consistently dizzy for the last year” I’m now starting to wonder if she’s talking to the right patient.

“Oh right??” she say’s looking at me like i’m making it up.

“Yes, its part of my syndrome…?” I gesture to my notes.

“Your syndrome?” she stares straight at me like ive just told her im pregnant.

“Yes, my syndrome, its all in my notes…” Im now getting slightly sarcastic and trying to keep calm and gesture to my notes again.

“………..” she looks at me in silence

“Ive got postural orthostatic tachycardia syndrome, which means I go tachycardic when i stand up and im currently waiting for tests in London before i can find out the right treatment for it” I real it off like im trying to sell cattle at a cattle market.

“Have you had a 24hr heart tape done?” she asks.

“yes they did a 48hr one last year… it should all be in my notes” I’m now extremely p***ed off that she clearly hasn’t even looked at my notes.

“Well, I’m going to discharge you, as you’ll need to go to London for the tests and hopefully they can find a solution. Best of luck!” she says as she clicks her pen and grabs her note pad.

“Yes but what should i do, if i have another one of these seizures..?” I say, grabbing her attention before she turns away.

“Well, you should get up slowly”

I try to tell her that she’s stating the bleeding obvious, “Yes I’ve been…” she cuts me off,

“Don’t move around quickly as it’ll only worsen things”

“Yes, I know, I…”

“Thats probably what caused your collapse today”

I just sat lost for words. She hadn’t bothered to read my notes, despite me writing saying how things are and what i’ve been dealing with for well over a year now, and then she patronizes me like i jumped out of bed this morning and did a cartwheel followed by a forward roll before going to the bathroom. and to top it all off she still thought i’d collapsed! I felt like grabbing my notes and slapping her around the face with them. un-frickin believable…

  1. Dan!el permalink

    NHS!! Useless most of the time!!

    I hope you get to London soon!! 😦

    • Yep, but strangely the supposedly ‘less senior’ doctor was fantastic… Oh well.

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