Temporary derailment

“Do you normally use a walking aid?”  Do I normally use a walking aid? Do I normally use a walking aid? “No! I ran for an hour and a half on Friday morning!” and I burst into tears. It was Monday morning and I had turned into an old lady overnight. On Sunday morning I got out of bed as one does, and my leg gave way. I went into instant denial – muscular, probably that kick set at swimming on Saturday evening, it would sort itself out.  But by late afternoon I was having problems getting up stairs and I couldn’t open the clothes pegs on the washing line. A stroke? Please, no. I sat and loooked at the phone as we wondered what to do. The cancer helpline? NHS 24? There was no point – we just headed to A&E.

Ghost Zimmer


All of life, and most of the Lothian Police force, is at A&E at the Royal on a late Sunday afternoon. Thankfully I skipped the waiting room, gave the first of endless blood samples, saw the first and most junior of a long stream of doctors, and then settled in for a long wait and a spot of Edinburgh wildlife watching. It became clear, as the hours passed, that I was not going home that night and it being Denial Sunday of course I hadn’t brought so much as a toothbrush. Book, yes, overnight bag, no.

The Combined Assessment Unit, where I spent Sunday night, is a glorified corridor, a sort of U bend in the main thoroughfare with the nurses’ station in the centre. I don’t think they really expect you to sleep, especially not when your bed is only separated from the passageway by a curtain. On my left was a silver haired gentleman who had been found unconscious somewhere near Greyfriar’s Bobby. He was fully conscious now but couldn’t speak. No, he really couldn’t speak. Ever. So they had no idea who he was, beyond “John” tattooed on his arm, or where he belonged, and during my stay one of the nurses turned detective and spent most of her day on the phone trying to find an identity. Shouldn’t Social Work do that sort of thing? A doctor eventually recognised him from a previous visit, and the trail turned hot. A little further to the left was another elderly gentleman who was hard of hearing and thought the nurses were there for his personal attention. All communication, and there was a lot of it, was at a shout. “Nurse! Nurse! Bring me my clothes! I’m going home!” But they didn’t know where he came from, either, and couldn’t track down any relatives. “I want my clothes! I want ice cream! Is it lunchtime?” I got through most of “Shantaram” by David Gregory during my stay in the CAU. I should have sent out for ear plugs.

Back to Monday morning. By this stage, 24 hours on, I could still stand but couldn’t walk. By lunchtime I couldn’t stand and by the evening I could no longer turn over in bed. Doctors of varying juniority came, tapped my reflexes, and went. “High cholesterol” snapped one of the more senior ones before she moved on. I went for a brain scan. “The good news” said a cheery consultant “is that you have a brain. And it’s a big one!” His  junior associate was only used to seeing scans from more elderly patients, apparently, so thought the lack of space around mine was abnormal. Nice to know I’m not elderly yet. Anyhow, I hadn’t had a stroke; I think that was good news. An MRI scan of my spine showed nothing untoward. That was also good news, as any tumour or damage would have had to have been at neck level. So by Monday evening, I was deteriorating by the hour and they said “We don’t know what is wrong. We will have to wait until tomorrow to talk to neurology.”

Monday night was long and grim. My legs weren’t working, my arms were weak, I couldn’t turn myself in bed,I didn’t know what was going on, there was no treatment happening and I thought I was heading for a hospice. Motor Neurone Disease? Multiple Sclerosis? Neither an appetising prospect. And all this was punctuated by “Nurse! Bring my shoes! Where’s my stick?” “No, Mr X, YOU HAVE TO STAY HERE.”

Tuesday morning. I was given a choice between using a bedpan while flat on my back in a corridor or a catheter. Lovely.  One of the jokey male nurses said “Now come on, pull yourself together ha ha ha!” “Ha ha ha” I laughed through clenched teeth, because I could still clench my teeth. There had already been a lot of tears, each time another function went, and my sense of humour was in crisis. The progression of doctors began again. Someone came and tapped all my reflexes, and told me my nerves were fine so it was something muscular.  I didn’t like to disagree but even I could see that, while whacking me with a hammer was certainly generating movement, it was action/reaction sort of physics and there was nothing reflex about it.

But then a neurologist arrived. What a lovely lady! She tapped all my reflexes and went “Hmm”. I wiggled – or didn’t wiggle – my toes, lifted – or didn’t lift – my leg, made chicken wings with my arms and coughed. Or rather didn’t cough. “Is that a normal strength of cough?”  “Er, no, not really.”  And then suddenly there was a diagnosis, and a plan. Guillain-Barré Syndrome. And no, I’d never consciously heard of it. I would be moved to the Western General, where neurology is based, the moment a bed was available and they would start treatment as soon as possible. Suddenly there was a way forward.

Photo credit: Ghost Zimmer Antony ***



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