In January 2013 I felt a bit stiff, the result of the man-flu I was very obviously dying from.
My ‘stiffness’ was down to Guillain-Barré syndrome although we didn’t know that at the time, and neither (it transpired) did the doctors on my first visit to hospital, as they sent me back home.
Over the weekend my stiffness became more pronounced, and I was unable to move from the sofa. On the Monday morning my wife (7 months pregnant) and a friend carried me to the car and took me to the local doctors’ surgery, who thought I’d been involved in a car crash after seeing my inability to stand, walk or move my arms. After talking to me he declared that I “must have trapped a nerve”.
Monday night and my friend John phoned an ambulance as I was unable to see, hear or respond to simple questions, couldn’t move, and was struggling to keep my eyes open. I didn’t see the house again for a few weeks.
Several lumbar punctures, an MRI scan, a CT scan and about a million blood/urine/stool tests later and (I don’t know this as I have no idea where I was) I’m lying on a bed in the ICU, in a corner, with ‘unknown condition’ written on my notes.
On the Thursday a consultant neurologist returned from his holidays, took one look and declared “GBS”. A huge ‘thank you’ to Dr Stefan.
Onto the treatment; IVIg, replacing my white blood cells with synthetic ones. I have no idea about any of the events surrounding this, but it must have done something, because over the next few days I regained some level of consciousness, and can actually remember some of the events of the next few days.
I definitely remember my hot water/urine bottle being red, which prompted the nursing staff to call a doctor, who took one look at my yellow complexion, the bag full of urine/blood and ordering tests to check on my liver function. The results? Liver 0: IVIg 1.
The next few days are a blur of being bathed by nurses and my very pregnant wife, being pumped full of suppositories and laxatives, being craned on and off the toilet, vomiting, crying and an absolutely desperate feeling of uselessness as I was supposed to be looking after my wife who should have been taking it easy.
By Valentine’s Day I was eating solid food (I can definitely recommend those nutrient-rich drinks as the most disgusting thing ever invented), and the wonderful staff allowed Michelle to come in and feed me, although absolutely no alcohol was consumed by either of us as it is against hospital policy. It was the best thing I’d ever eaten (but not drank, obviously there was no alcohol involved), and I think this single act made me realise that I needed to kick GBS into touch and get back to the business of being a proper husband.
And so began the physio and occupational therapy. Who would have thought that sitting up would be so tiring? By February 21st I was finally declared to be not ill anymore and was moved to Chatsworth Rehabilitation Centre to learn to walk again. How can you forget something you’ve been doing for more than 40 years? Apparently you can, because I did. My brain wasn’t sending the signals to my legs, or it was getting blocked en-route. Cue the electrical tests. Stick a needle in the top of your leg, another in your foot, attach cables and fire about 27 bzillion volts through the unsuspecting victim/patient. There was no doubt that feeling had returned to my body. Whatever my personal torture was it seems that my wiring was still slightly off and needed to be worked on with my occupational therapist.
Physio sessions focused on improving (actually introducing) core strength before building stamina, balance and mobility, and I have to say that it was extremely hard, tiring and emotional. It was made slightly easier by the fact that one of the team looked like Cameron Diaz and I was always first in queue for treatment.
Eventually my arms became strong enough to propel my own wheelchair and I would sneak into the PT room, strap myself into the powered exercise cycle and rack up a few miles whilst entertaining the unit with my X-Factoresque accompaniment to my iPod. they loved me so much that I would open my eyes and there’d be a crowd around me shaking their heads in disbelief that such a sound could come out a middle-aged man with no vocal training whatsoever (that’s what I believe and I’m sticking to my version).
At some time during my stay in rehab I developed bell’s Palsy from which I have made a full recovery, apart from some optical focusing issues (although that could arguably be age-related), don’t know where it came from, what caused it, or why it went, but I swear I was the spit of Johnny Depp whilst I was wearing the eye patch.
On 26th February I received a phone all to say that my long-suffering, beautiful, dutiful wife had gone into labour, and after much pleading and many promises that I would return immediately I was allowed to return to hospital to see my son being born. The delivery suite was furnished with another bed for me, and by a surprising quirk of fate the midwife that delivered my gorgeous boy was the daughter of one of the nurses that had authorised my being there for the birth.
I spent another month in rehab before being allowed home to continue as an out-patient, and with the intense sessions and the exercises that I was given to perform at home I was walking, unaided by August.
I was eventually fit for work again by January 2014 and, although my job is not particularly arduous, I was surprised by just how physically exhausting walking around and talking to people is. Almost a year later and I still have to pace myself, but I climb 200 steps 5 times a day, and feel ready for a challenge now, hence my decision to run 10K and try raise awareness (and money) for GAIN.
In January 2014 I also discovered that most of my body had returned to its former, magnificent glory, as Shell declared that she was pregnant, and in September 2014 she gave birth too the hairiest, prettiest little girl to complement our stunningly handsome and talented 18 month-old son.
Huge (and frankly inadequate) thanks are given to everyone who helped me get through it.
Adam Scorcese
