My journey with GBS started nearly 30 yrs ago, as a fit, healthy and sporty 27 yr old, with a bout of influenza nicknamed “the Phillipine Flu” back in August 1983. It took me approx 6 weeks to recover and got back to a normal daily routine although still feeling somewhat tired, with my husband and 2 children aged 5 & 3.
In November, 3 months after the initial onset of the Phillipine Flu, our family went for a family get together on the central coast. On the way home to our home in Richmond NSW, we stopped for some takeaway food for dinner, and almost instantly felt ill. My husband and children were fine, and was only me feeling like this. After reaching home I had what I can only describe as the worst bout of gastroenteritis known to man. I was left so weak my husband had to carry me to the bathroom each time.
I spent the next couple of days developing what I now know as GBS symptoms. The weirdest being that everything tasted like soap that I did try and eat or drink. I was very weak and could barely walk around the house. I had also lost some use of my hands and my skin was so sensitive.
I became scared on the 3rd day and asked a friend to take me to my local GP and didn’t even care that I was in my PJ’s. After checking me over he sent me for blood tests and collapsed on the bed there sobbing sensing that something was terribly wrong. Luckily friends helped with my 2 little ones getting them to and from school and preschool. Our eldest son seemed to sense that something was up and use to come straight to me in bed with a drink when he got home.
On the 4th day my husband rang the GP to tell him I was deteriorating and came back to me saying that I was to try and eat an egg. Well you can imagine what I said I would do if he did bring one in. By this time I wasn’t eating or drinking. The Dr then came to visit me later that morning, and when he pulled the sheet back I was shocked to see that all my calf muscles had deteriorated. I could see the looks of concern and would be getting another home visit the next day.
The following day my husband had to go to work, although very reluctantly, and said he would try and get off at lunchtime. He was in the RAAF. When he arrived home I was even worse not being able to get out of bed at all. He immediately called my GP who told him take me straight to Windsor hospital and he would organise tests.
The next 2 days were the most painful of my life. I couldn’t bear anything touching my skin and couldn’t even use a pillow. I felt like I had run a marathon and done 10 straight days of aerobics. After I was admitted they did a lumbar puncture, which was cruel, and took 4 of them to hold me in position and me yelling.
Next was a check up from a neurologist and blood tests. It was the first time I heard the term Guillain Barre Syndrome mentioned. The next day I was transferred to St Vincents where I again underwent a barrage of the same tests including another dreaded lumbar puncture. They sneakily came from behind and hit me with a pethidine shot, and I can honestly say it was the best I felt during this whole ordeal. Back in the 1980’s not as much was know about GBS so was sort of a guinea pig and was even a case study for interns being taken into a room of white coated people and talked about.
I was lucky enough that my deterioration stopped there whether out of sheer determination or by good luck. By this time they confirmed that it was GBS and warned me of possible organ failure. I really didn’t comprehend how serious this was until later in my recovery after reading up on the syndrome. I did have breathing problems about the 3rd day at St Vincents and had the buzzer ready in my hand but thankfully passed and to this day think it was shock and determination that helped ne overcome it..
By the end of the first week there I was made to sit up by a grumpy old sister and have never forgiven her. It was so painful. By this time I had lost so much weight that a lady in the same ward said I looked like a Bi-afran. I did however start to eat simple things and very cautiously start physio. As all my family and friends were back at Richmond I asked to be transferred back to Windsor as soon as I was out of danger and after another 2 weeks finally went back.
My 2 children were being cared for by my mother at her house on the NSW south coast, so my husband went and picked them up after organising time off, and I finally got to see them after over a month in hospital. I was finally allowed home by my sympathetic GP on my birthday in December. He said I was depressed and needed something to cheer me up. I hugged him. I found out later from a friend who had the same GP that he was distracted during one of her consultations, and she asked what was wrong and he said he was worried about me. This apparently was in the first stages before I was admitted to hospital.
I had to attend outpatient physio everyday, and every day was a struggle and had a 3rd lumbar puncture to confirm that my count was declining in my spinal fluid. During the procedure they hit a nerve on my right side not knowing this would leave some permanent damage.
At home I couldn’t hang out washing, cook meals, open jars, do my daughter’s hair, and went around on my bottom doing what housework I could manage. My husband had to come home from work and then start at home. I was very independent and determined to not let this get me down for long. I was offered home help but refused and my GP was constantly in touch.
I didn’t really have much support from friends once I came home, even to the point of my husband received a posting to Victoria a month after I was released from hospital. He had to do nearly everything and to this day don’t know how we managed it.
Looking back over the years of physio, hydrotherapy, tests and pain, as well as the love of my husband and 2 children, who learnt to be very independent from a very young age, and as I hear so often when an illness like this changes your life forever, I am so grateful for the inner strength I found and the will to never dwell on what might have been.
I have subsequently been diagnosed with fibromyalgia which I find hard to keep under control. Again I still carry on to the best of my ability and keep on keeping on. I have held part time employment over the years and to my surprise won a full time position in the Public Service at the ripe old age of 40.
I may not be able to do the physical things I would like to and now have to wear a splint on my right leg for support and drop foot. My right side was mainly affected and still suffer chronic weakness even today. I can no longer work but have the love and support of my family and my husband retired from the services to help me at the ripe old age of 45 and we spent the next 6 years caravanning around Australia, and recently went on a 6 week vacation to the United States even going to the Grand Canyon and Alaska. Was very tiring BUT ‘I did it’. My interests now besides 3 adorable grandchildren are playing middle eastern music on my Djembe drum and helping run an online chat-room for ladies who need support for whatever reasons.
I don’t know what is in the future so am so glad I put one foot in front of the other and take each new obstacle in my path. I am in awe of all the GBS sufferers who develop full blown symptoms and am aware of how very lucky I was to not suffer the full force of this cruel disease.
Thankyou for listening to my story and always sending positive thoughts to everyone.
Sandra Cluley - December 2012