Living with Guillain-Barre Syndrome

My name is Sandra, I have had Guillian Barre Syndrome twice. When I was 13 yrs old during the christmas school holidays, we had some relatives here, so we spent alot of time going out to beaches etc. One morning i woke up feeling really tired and my family thought i just wanted to get out of helping on our chicken farm. But as the day progressed i couldnt even brush my hair. That night when i went to shower i couldnt take my top off.

Next morning when i told mum i couldnt brush my hair she got worried and took me to emergency. After 2 days and a spinal tap they diognosed GBS I was completely paralysed by the 2nd day. They almost sent me to a childrens hospital because my breathing was getting worse, but after a week it slowly improved. I stayed in hospital for 2 months then had out patient rehab.

Fast forward 14 years and my worse nightmare appeared. It was the June long weekend, my husband was away for the weekend and i was home with our son 6 and daughter 3 and i was about 5 months pregnant. On Saturday after taking my son to soccer my mother asked to spend the weekend at her place. We went to dinner that night, and i complained of a sore back. On sunday morning i woke feeling tired and walking was tiring me. Holding my utensils for lunch was also a little difficult.

My family kept saying your probably coming down with the flu. In the back of my mind was the thought of Guillan Barre. That night we went to my sisters for a party and needed to lie down, so i went in her house and had a rest on the lounge. When my sister came in to see how i was i couldnt get myself up. My mother took me straight to the hospital. They put me in Maternity ward and when i told them what i thought i had, they decided they needed to transfer to a bigger hospital. The next morning i couldnt open the cereal box for breakfast, so i grab the apple and ate that with great difficulty. They transferred me and did all the test again and after a day diognosed GBS again.

My husband was contacted and returned home on Monday in shock. This time it was a lot worse and by day 5 they put me on respirator. The baby was doing well moving and kicking while i was paralysed. All i could do was move my head and blink. I had to comunicate with my eyes and nodding. They gave immulogan and did plasma farises, but they didnt work that well. I also couldnt eat so i had a tube in my nose.

I spent about 3 months in intensive care and then went to rehab. In October i gave birth to a beautiful little Boy, naturally. It was difficult because i couldnt walk around and move like i did with the others. But mother nature took over and there he was, very healthy. After 2 weeks we both went back down to rehab and all the nurses were so excited having a newborn because they’re so used to having the elderly and stroke patients.

After 3 weeks my mum had to take the baby home because i wasnt coping with the rehab and the baby. Then on November 30 I was discharged from hospital and moved into my mums with the kids. On Christmas Eve we all went back home. With the help from our fammilies, husband and especially my son and daughter i managed at home. Mum spent the next 2 months taking me to rehab.

Now Im 34 yrs old, Im not 100% recovered but i do everything as normal, but i cant get rid of the fear of it coming back. Because i had never thought i could get it twice, and now that i have, everytime i feel a little ill i start to panic. But as the years go by those feelings are starting to subside.

So anyone out there with this, just know there is a light at the end of this terrifying tunnel.