What is your role on the committee and what does it entail?
My role, as Secretary, is to organise meeting venues and liaison with the Club or hospitals for suitable rooms with the necessary capacity and facilities required for each meeting. I also write back to the Secretary and /or Board of Directors after our meetings, and request our room hire fee be waivered and donated back to the Association. So far I have been successful, and we have received back 100% room hire costs. I do hospital visitations for new GBS and CIDP sufferers and continue to visit them in ICU or hospital wards and later at rehabilitation hospitals. I follow their progress and keep in touch, continuing to give support to both them and their families for as long as they need me. Quite often they become members themselves but not always, as some just want to forget what they have gone through and just get back to living their lives again as best as they can. I write a report for each meeting and sit on the Board, filling in as Chair or other positions when required.
Can you briefly share your experience with GBS?
I first suffered severe pins and needles about 18 years ago, after coming down with the flu whilst holidaying on the Gold Coast. When I consulted a doctor I was told that I had probably overdosed on vitamin C and not to worry. The severe sensations were like the pain was from the inside wanting to get out and I remember the only way I could relieve them was by pressing the area with my hands or stamping my feet repeatedly. These strange feeling lasted about 3 months and although very painful I came though it without seeking advice from another doctor. I gradually got back to normal but I have been afraid of taking vitamin C ever since. Over the years I forgot about this experience. My husband and I had just returned from Perth after being over there for 12 months. We decided to buy a van and we took 4 months to return to Sydney. We had only been home a few weeks, when both Malcolm and I came down with a very severe case of the Flu. Mal recovered but I lingered on. On New Years Eve 1999, we walked to the water’s edge and watched the Harbour Bridge fireworks, but on our return I kept stumbling as if someone was kneeing me in the back of the legs. I felt very tired and my feet were aching so I went to bed, leaving my husband downstairs to continue watching the TV and all the New Years Eve festivities by himself. On the morning of 1st January 2000, I woke up and was unable to get out of bed. I tried but slid to the floor with no strength in my Legs or body. My hands, feet, and face were suffering from pins and needles. I had often wondered how sick one would have to be to warrant the call of an ambulance. At this stage I knew instantly that there was something very wrong with me. I called out to Malcolm and he helped me back up onto the bed. The ambulance was called and at my insistence they agreed to take me to hospital. They thought I was over reacting and was experiencing a reaction brought on by the flu. My experience with GBS can be read on this website under “Case Histories”.
What was the toughest challenge you faced during your recovery and how did you overcome it?
I went downhill very fast and I supposed it was the thought of becoming a vegetable and just being a burden on my husband and family. I told my husband that I wanted him to leave and not come back. In the past he was a man who preferred not to watch a movie or TV programme where there was some-one suffering. I wanted to spare him and my family any worry. Not being diagnosed for a number of days, I did not want anyone to catch what I had and pass it on. To my relief no-one took any notice of what I said. I became quite strange in a way and kept remembering how I used to walk by disabled people in wheelchairs, and promised myself that I would in the future (if given the chance) stop and acknowledge them with a smile and a few words- just so they didn’t feel invisible and that some-one cared. I felt very humbled when I received flowers from friends and well wishers and would cry. I would not think myself worthy of them spending so much money on me. I did not know of the association and did not have any contact with people who could tell me what was going on. The doctors would only say that I would get better. How at that point I craved information.
How did I overcome it?
By acknowledging each and every small achievement I was able to accomplish. I was like a child lapping up the praise my husband would bestow on me and the support he gave me was so inspiring. I wanted to make him proud, so I would try so hard to show him how well I was getting. When I was transferred to Balmain Hospital from RPA I enjoyed helping the elderly patients and that in turn helped me. I contacted the GBS Association when I returned home after a neighbour had printed out some information for me. I would have loved to have had a visit from some-one who new what I was going through. I decided to join when I was well enough.
What inspires you each day?
I enjoy and appreciate my life, my husband who inspires me daily and I am happy to visit patients and let them see that there is light at the end of the tunnel. I try not to worry about things that might never happen and enjoy and help where I can. After all these years I still ache a lot, have no reflexes in my legs, cannot run anymore and need help pulling myself up when I crouch down, but what I have gained from this experience is well worth all the suffering I have endured.
Do you have anything else you would like to share?
I would not wish this illness on my worst enemy. But my experience I believe, has made me a better, compassionate and more understanding person. To look at me to-day you would not believe that I was ever sick. I have recently become a very proud GREAT GRANDMOTHER. Below is a photo of the five generations.