21 years later…
In early October 1994 I had a severe flu like illness. I was 17 years old and still at school. After a week or so of wishing I was dead, I was well enough to go back to resume my studies. A few days after that I was walking home one evening down a steep Hill, when I found that I was having difficulty walking. My legs wouldn’t bend properly at the knees and I adopted a zombie / Frankenstein monster walk.
I had recently passed my driving test, and when I got home my mother told me to drive to my sisters friend’s house to pick her up. I said that my legs felt strange but she told me to stop being silly and go and get her. I had a very strange drive where I couldn’t properly judge how hard to press the brake pedal!
By late evening I was trying to play my guitar, but I found that I couldn’t even fret the strings and was struggling to hold a pick. Even at this point, I still had no idea that anything was seriously wrong. I thought I must have somehow pulled some muscles and off I went to bed.
In the morning I woke up and tried to get up, only to find I couldn’t do any more than push myself up on my elbows. At this point my parents realised that something was wrong and called the GP’s surgery. As I couldn’t get out of bed, I had a rare home visit.
Amazingly, my doctor, a woman probably in her late 50’s at the time, just so happened to have done a thesis on GBS in her student days and gave an initial diagnosis immediately. It was the first case she had ever seen (she was quite pleased!).
Shortly afterwards, an ambulance collected me and shipped me off to the Royal Hallamshire Hospital in Sheffield. Unfortunately for me, there had been a bout of meningitis in my school year at that time, so I was given a lumbar puncture to check for that condition, which was one of the most unpleasant things I’ve ever experienced. I was also given some sort of electrical nerve stimulus test which was also very painful. The initial diagnosis was then confirmed and I was started on a drip of immunoglobulin. I found that made me shake badly as if I was very cold.
My lung capacity was monitored hourly and it eventually dropped to a level where I was moved into intensive care. By this point (around 24 hours after I had the first symptoms) I was paralysed from the neck down, bar some breathing capacity!
I was extremely lucky that I was not ventilated. I got very close, but managed to avoid it. After around 5 days in the high dependency unit, I was moved into a neurological ward to recover. After around 2 weeks I was thrilled to find I could move the big toe on my right foot. No one could see any movement, but I could feel the muscle moving. Over the next couple of weeks my movement came back and I was gradually able to start physiotherapy and occupational therapy. I went home for a night at Christmas and then was discharged to out patient care in January 1995.
Other than muscle twitches/tremors (which I still get), I felt I’d had a lucky escape and got on with my life.
A few months ago, my mother mentioned that she had heard an article on BBC Radio about GBS. In it they briefly mentioned that long term effects included fatigue. Over the last 21 years I’ve become fairly well known to my family for ALWAYS being tired. They (and I too, to be fair) just put it down to me being lazy. I will frequently take a nap during the day and I always wake up tired, no matter how much sleep I have had. I’ve frequently commented that I have never felt refreshed after sleep.
I’m a reasonably active person. I walk 45 minutes each way to work each day, I am capable of running more than 10km and I have two young children to keep me on my toes. But I do all of this constantly feeling tired. Today, for example, I slept for 8 hours overnight, took 30 mins to wake myself up enough to get out of bed and then on an hour long drive to a family event, I fell asleep (no, I wasn’t driving!). The second I woke up from my snooze I felt tired. I even tried to have a nap in a chair in the kids playroom at my in-laws house before driving home feeling shattered and then going to bed, where I am now, at 9pm. I’ve not done enough today to justify feeling as tired as I do.
I’ve done some Googling which has turned up a few articles linking GBS with long term fatigue issues. However, none of them give any clue as to what to do.
If these issues are related to my illness all those years ago, is there any treatment to stop me being so lethargic all the time?
Thanks for reading. I’d be interested to see if there is anyone else who has experienced similar problems, especially so long after having the illness.