Six months ago, Sabine Menassa-Matta was struck down with a rare but dramatic neurological disease. This is her story as told to Fiona Tyrrell
WHEN I WAS diagnosed with Guillain-Barré syndrome (GBS), it was a relief of sorts to find out what was wrong, but I knew I had a war on my hands.
GBS is an autoimmune disease which means that, instead of protecting the body, the immune system attacks it. In the case of GBS, the myelin sheath covering the body's neurons becomes inflamed and the muscles stop working.
It is very painful. When the muscles stop working there is a spasm. It is like having a heat storm raging through my body.
The onset had been relatively gradual. Last February I was tired all the time, but I put it down to breastfeeding Raquel, who was seven months old at the time.
Next I began to feel pins and needles around the nails of my fingers and toes. Then one day I woke up with massive pain in my face. I thought it was the flu or a virus.
However, I knew something weird was happening when I attended a friend's wedding and found that I could not hold my fork or knife - they kept falling out of my hands.
That night my husband, Elias, went on the internet and looked into disorders of the nervous system. He rang a friend back home in Lebanon who is a neurologist. He said it might be GBS.
We went to the hospital in Cork the next morning. When I was diagnosed, my doctor, Roddy Galvin, told me it was going to be a rough ride.
The last person in Cork University Hospital (CUH) to have the disease was in hospital for a whole year.
He explained how the paralysis was setting in and how it would progress up my body and then plateau for up to six months. With the right treatment, he said, I would regain full functional capacity.
My treatment included plasmapheresis and intravenous immunoglobulins. The paralysis began to move higher and higher up my body until it began to affect my diaphragm and I had to have a tracheotomy and was put on a ventilator.
Eventually, I was totally paralysed and could only communicate by moving one of my eyes up and down. I could not even swallow my own saliva.
One night I was in real danger. My blood pressure was up and I could hear a nurse telling Elias to bring Raquel. They thought I was slipping into a coma, and had plans to sedate me.
After that all I remember is being in a tunnel seeing gates and a white husky dog at the end of it. I felt that the dog was telling me to go back to my baby. It is hard to describe, but I am sure that something spiritual happened.
I'm told that some time after that, I opened my eyes and my vitals improved. So the decision was taken not to sedate me.
Then the really hard stuff started. I experienced incredible pain in every part of my body. The nurses were just amazing. The treated me like a sister and like a daughter. When I missed Raquel they used to cry with me. One of the nurses even gave me a facial.
Our experience in CUH was excellent. We had no relatives in Ireland so initially Raquel was given a bed in the children's ward so I was able to continue to breastfeed her. Elias was jumping between the two of us.
When the paralysis moved up my body, I wasn't able to feed her anymore and I was given medication to stop the milk. She was traumatised and refused to take the bottle. It was heartbreaking for me.
Raquel was my real weakness. The separation from her was so unexpected and it broke my heart. When things got really bad, friends took Raquel home with them for two weeks before the arrival of my sister and mother from Lebanon.
The first time she was brought to see me she refused to look at me. When I began to recover and was able to say her name for the first time she jumped on me and started kissing me.
My case was unusual, and I didn't experience the plateau stage, which meant that my recovery was quicker. Things started improving in March and I was weaned off the ventilator in the first week of April.
Being able to talk again was very, very good. However, when the nerves begin to heal they burn and cause extreme pain. I spent two months in intensive care before being moved to an observation unit, where I spent another two months.
Then my rehab started. By June I was able to wheel myself to the bathroom and brush my teeth. Then I started taking steps. I was discharged in the middle of June.
I still can't do much. I can feed Raquel and I can do bits and pieces around the house. Elias is at home with us all the time now as well. I have a lot of pain still and burning sensation in my lower back. This will stay for a while.
I regard myself as lucky to get this and not something else. At least I was given a second chance.
When it first happened, I was a bit worried because of all the things you hear about the health system, but our experience was excellent.
I am very lucky that we were in Ireland. Apart from being at home in Lebanon, I don't think I would have got such good care anywhere else in the world.
I am convinced that, apart from the great care I received in CUH and the love and support of my husband, my determination not to let the syndrome win really stood to me.
A strong mind and positive attitude is very important when you are paralysed and dependent on other people.
• Readers who would like to talk about their own health experiences, good or bad, can contact this column at healthsupplement@irish-times.ie