Rerailment

FlowersTony Benn had Guillain-Barre Syndrome. So did Franklin D. Roosevelt and Joseph Heller. And now I did, too. It had been a long and stressful 48 hours when I arrived at the Department of Clinical Neurosciences in the Western General on Tuesday evening. It was not helped by fact that Tim, our younger son, was due to fly to Vancouver first thing on Wednesday morning for a year at University of British Columbia. I’d deliberately kept Monday and Tuesday clear so that I could help with any final bits of stuff. Oh yeah. Instead, Iain and Tim were dashing between the hospital, work, home, and life was pretty strained. But they arrived at the Western at the same time as me and so were there when I was admitted. This was important because they both saw the doctor (called Tim – the doctors were mostly called Tim or Chris) examine me then give a really clear explanation of what was going on, what the treatment would involve and, most important, the prognosis. It would get worse before it got better, I might end up on a ventilator in HDU, but I would get better. Phew. How long would I be in? No idea, they said, except that it would be “weeks to months”. I didn’t really absorb that fact just then, or the bit about HDU – I was focussing on the “will get better” bit. The guys went off to finish start Tim’s packing and I got settled in and plugged in to the first of five doses of intravenous immunoglobulin (IVIG).

Oh thank you everyone who has ever given blood. I used to, a long time ago, before mine became undesirable. IVIG is a blood product, other peoples’ antibodies to replace mine which had gone out to lunch, turning on my peripheral nervous system. It was probably all triggered by an insignificant dose of laryngitis a couple of weeks earlier; I will never again trust an insignificant cold. Wednesday morning I woke up in DCN Ward 31, couldn’t move my arms, and promptly burst into tears. Again. Now I couldn’t even feed myself. It was just about then that Melanie, my oncology consultant, poked her head round the  curtains. She put her arms round me and told me reassuring things, mostly along the lines of “This is horrible but you will come through it” and “We will look after you”.

The next few days were a bit of a blur. I stopped crying but lost all movement in my arms and legs, although my shoulders and hips still worked. This was good as it meant I could press the buzzer if it was in my hand and my hands were next to each other – I needed to change position every now and again and I still needed to wee. I got used to people doing every little thing for me, being hoisted in and out of bed and drinking through a straw; it’s amazing how heavy your limbs are when they’re not working. And you know that thing about your mother telling you to wear clean underwear in case you fell under a bus? I made a mental note to buy new underwear once I escaped. Meanwhile, I sent people out foraging for essential supplies of nightdresses and pyjamas. I played host to a whole series of students, all keen to tap my non-existent reflexes. For additional entertainment I was blowing into a lung function thingy at intervals – one of the doctors wanted hourly intervals but the nurses refused to wake me up every hour during the night – and watching the volume of air I could shift drop lower and lower. And then it stabilised, just before it reached the critical level at which a ventilator would have been needed. Oh yes! Life was looking up.

A few days on and suddenly I could wiggle my fingers and toes. And then, if I moved my shoulders, I could flop my arms about. It wasn’t long before the nurses had me strapped into a contraption that helped me stand – much easier for getting to the loo. From there it was a short hop and a skip to a zimmer frame, then sticks. As I shuffled along the corridor on a zimmer one day, physiotherapist by my side, one of the nurses watching my progress suddenly said “I’m going to take up running!” I’m not sure that my basic fitness could regrow myelin nerve sheaths, but maybe it helped my muscles get moving again once the signals started to get through. Later that day the same nurse dashed in, stuck a gold star on me, and dashed out again. By the second weekend, and two weeks after it all started, I was walking quite comfortably with a stick, was managing stairs and could make (but not eat) beans on toast and I was looking at by-passing the Astley-Ainslie rehab hospital and going straight home on the Monday. “But we wanted to see you paralysed!” wailed my sisters who had come to visit.

The nurses on Ward 31 were wonderful. They had a ward full of people with all sorts of neurological problems, many of whom could do very little for themselves, but they seemed to have time for everyone. Noone was left with food sitting in front of them that they couldn’t eat, everyone was washed and dressed with a smile. One of the highlights of my day was being put in a bath full of bubbles every morning. Sitting in a hoist all the weight was off and I could move everything a little bit. It’s the simple things, isn’t it!

One of the remarkable things about this whole adventure was the number of visitors I had. I kept in touch through Facebook when I could type – one of the nursing assistants helped when I couldn’t, adding “…and bring chocolate” to a status update. Chocolate arrived, generally with people in tow. I had visitors from all over Edinburgh and the Lothians, from France, Spain, Wales, Oban, Glasgow, Manchester, Donegal, Essex… Unaccompanied chocolate arrived from America and Abu Dhabi. Norfolk sent pyjamas. My brother jumped on a train in London, came to see me for a couple of hours, and got the train home again. There was a procession of the fittest people in East Lothian – swimmers, triathletes, runners, cyclists. The window sill filled up with flowers. And then two weeks after the nightmare began, I walked out with my sisters under my own steam. I can’t overestimate how everyone helped my morale and my recovery. I am now fully recovered and it just seems like a bad dream. Thank you everyone.

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