In April last year, Sharon and I finally tied the knot; we had been engaged for far too many years. There is not too much that we haven’t been through in our time together but nothing had prepared us for the impact that GBS inflicted upon our family five years ago.
In 2010, I was healthy and actively travelling the country for work during the week and at weekends, was running around everywhere with our young family. On 1st June 2010, having cycled only a few hundred metres with my son, it was obvious that something was wrong with my legs. Two days later I was flat out in bed with Campylobacter food poisoning, rapidly losing all strength and beginning to get pains in the peripheral parts in the peripheral parts of my body. It took three and a half weeks and several visits from my GP before GBS was suspected and when I was admitted to hospital, a lumbar puncture confirmed this. My GP was amazing and followed my progress and gave so much more advice than any of the hospital staff and consultants. Mainly because she had come across something new and had the desire to learn. The alarming thing was how little the staff in hospital looking after me, actually knew about the condition.
At this stage, I had no idea what GBS was nor what to expect.
I was lucky. My breathing problems stabilised and I was sent home just over a week later to recover back at home, which although the surroundings were nicer than the hospital, it was ill equipped for my recovery.
When it came to our wedding, we decided not to put the traditional wedding favours on the guests’ tables. Instead, the money we would have spent was donated to GAIN and a small card left on the table to inform our friends that we had done so. On the day, more money was raised by my youngest son, who had his own initiative to spell pocket sized packs of tissues to the guests that were left over props from the best man’s speech.
When I first returned home from hospital, I was left for a while on the sofa with a laptop. I thought I could Google to find the solution for a quick recovery to an illness I had no idea about, other than the name “Guillain-Barre syndrome”. Every search I made brought up websites full of the worst case scenarios. After a short time, the laptop nearly went through the window and it was a long time before I used the internet again. It was probably this experience that influenced the idea of the charity donations instead of wedding favours and having discovered that a well publicised heart charity did a similar thing, we decided to do the same for a GBS related charity. This is how I discovered the GAIN website. Probably too late for my own experience but very important to know that there is a charity out there who can help others who are faced with the same uncertainties that we faced.
The future? Well, although GBS still likes to remind me that I have done too much every so often, I am probably physically and mentally better than I ever dreamt I would be. I am back working, I have probably learnt the true value of friends and family and above all, finally got around to marrying my soul-mate who helped me through the worst times. And by the time this makes the newsletter, I have hopefully completed the 50 mile Liverpool, Chester, Liverpool cycle ride with friends and my son, who was one of my key motivators to keep pushing on. This is a small part of my training towards next years goal- to cycle up the Stelvio Pass in Italy which has been on my bucket list since I was about 14.
Keep up the great work and ensure that awareness is spread throughout professionals as well as the general public!