My Guillain Barre Journey:
I was fresh out of high school, eighteen years old. It was February 2013 and I was at the beginning of what I had hoped to be an eventful gap year, filled with working overseas, focusing on being a dancer, travelling, and many other exciting things that would help me decipher which career path I might take in the following years.
Before GBS- Taken in my final year of high school, 2012.
I was in the process of signing up to work in summer camps in America (I am from South Africa, Johannesburg) and I had some time to kill, so I decided to go and spend some time in Cape Town with my older brother who lived there, and an old friend from Primary school. The week before I was due to leave, I started feeling really ill in the sense that my neck was quite swollen and I was having terrible fevers at night. I went to the doctor who told me that my glands were fine and he could not see anything wrong with me, but I explained that this was not the normal size of my neck and I had one of the most violent fevers of my life, that lasted about 45 minutes, so there had to be something wrong. He gave me a general antibiotic and said that it should get rid of whatever infection I had.
So off to Cape Town I went, still on antibiotics and now having really bad headaches. I struggled to enjoy myself when we went out on the town as the headaches were not subsiding, and we took a brief hike up Signal Hill in Cape Town, but I felt incredibly unfit and exhausted. I merely thought that I was badly out of shape... and the next day my legs were horribly stiff. I thought that it was from the hike, but it only got worse. I also woke up with pins and needles in my legs and I thought that it had been from sleeping on my brother’s couch. I took comfort in the fact that I would be going to my friend that day, and so I would get to sleep in a proper bed. My brother dropped me off at her student accommodation in Stellenbosch on the 14th of February, Valentine’s Day, so my friend and I were going out for some drinks, however, she did not have a car and most people walk everywhere in Stellenbosch.
I was really struggling with the stiffness of my legs, and I remember telling my friend that I wouldn’t be able to walk back, I would either have to drink the pain away or find a lift. Luckily someone she knew was there and gave us a ride back to her place. She gave me muscle relaxants which knocked me out, and I pretty much slept the entire next day. Her mother came to fetch us in the late afternoon so that we could spend the weekend at her parents’ house in Cape Town and have another night out with her friends for Valentine’s Day. I was in an immense amount of pain by this stage, and I still felt quite out of it, but I managed to suck it up and go out for drinks. Once again, I tried to drink the pain away so that I would manage long enough until we were picked up, but I could barely walk to the car, and I was not even drunk! Her parents were horrified, as if I had drunk way too much and could not walk straight, but I explained to them that something was very wrong.
Taken on the 15th February 2013, the night before I went into hospital.
The next morning, the 16th of February, I woke up from the pain, it was so severe that I could not bend over, I could not walk down the stairs, sit straight, or practically do anything, so my friend’s mother had to take me to the doctor. I had plans to watch my friends do a freestyle motocross show that day, and I was hoping the doctor would just give me some medicine so I could be on my way to the show. How incredibly naïve I was, I could barely even walk into the doctor’s office. I remember that they asked me to walk in a straight line, and I couldn’t, then they tested my reflexes, which did not respond. This was when I realised that this was more serious than I had thought. The doctor started asking me if I had medical aid as I would need to go to the hospital, but I started getting quite emotional and scared, so they got hold of my mother and left me out of the conversation. All that I was told from then was that I would have to go straight to ICU where they will be waiting for me, and they would do some tests. I found out much later that the GP had pretty much figured out straight away that it was GBS, the brilliant woman, and she was sending me to one of the best neurologists in the country. She also told my mom to try and fly there as soon as she could, despite my mom asking them if she could simply fly me home for the tests, but then they told her that this was very serious and I needed immediate medical attention. She booked the first flight out and arrived later that afternoon.
First time having my hair washed in ICU, with a completely paralysed face.
Fortunately, my aunt was also in Cape Town visiting a friend, so her, my brother and my friend’s mom were all there with me. I distinctly remember the doctors telling my aunt that I would need to have a lumbar puncture, to which her response was: “is that really necessary?”. I was terrified, I had no clue what was happening or what a lumbar puncture even was. My mom arrived just in time for them to do it, but I was so nervous I kept feeling feint. They tried to do it while I was lying down, but after two failed attempts I had to sit up and have a third attempt, as if one was not bad enough.
Enjoying some sunshine just outside of my general ward with both of my parents.
I had countless blood tests, an MRI, an X-Ray over my chest and a nerve conductivity test. All of which concluded that I had Guillain Barre Syndrome. They started the immunoglobulin therapy as soon as possible, and explained that this medicine was incredibly expensive as it contained the blood plasma of a thousand donors. It was administered via a drip for only five days, while I stayed in ICU connected to numerous machines.
All of the different cables I was connected to in ICU
The doctors told me that I would only get worse, for at least two weeks I would go through a deterioration period, then I would plateau, and only after that would I start to get better. The worst part was they could not say how much worse I could get, but they explained some of the risks and had me doing breathing tests every day in case I would need a ventilator.
Within that first week I felt the rapid deterioration as the paralysis and paraesthesia spread throughout my body. My face became completely paralysed, except for being able to blink, however I still had to physically close my eyes with my hands when I went to sleep. I could still move my arms and legs; however, I was incredibly weak, very numb all over, and yet still in so much pain. I felt that they really could have given me stronger painkillers, it was like clockwork; every night at 3am I would wake up kicking and screaming because the painkillers had worn off. By then it was impossible to go back to sleep, and they started with blood tests and bathing around 4am. The nights in ICU really were the worst. I had to do physiotherapy every day, as well as speech therapy due to my face being paralysed. I struggled to eat and drink, but liquid food did not help as it would all fall out of my mouth. I did not finish most meals as it became too tiresome, and this did not help with my strength. I became so miserable as it was painful to laugh, difficult to talk, and I could not even take comfort from food. Eventually my jaw locked, either from the paralysis or from me clenching it in pain all of the time, but it only made matters worse. As a teenager away from home, in hospital, I mostly got comfort from texting friends, which the nurses tried to stop me from doing as they said it was interfering with the machines, but the physio said that it was actually good to keep my fingers active and spirits up. Soon my hands became weak and numb, and even typing on my phone became too difficult a task.
My breathing tests showed that my lungs were getting weaker, but right at the point that they were about to put me on a ventilator, I made a turn around and slowly started to improve, so fortunately one was not necessary. After a week in ICU, I was moved to general ward, which proved to be more difficult in some cases as the nurses were not briefed on each patient’s condition, and I often had to try to explain why I was not smiling at them, or why I could not take myself to the toilet. The therapy continued with the addition of two or three visits from a psychologist. I watched other people come and go while I stayed behind, barely making any improvements. I had hoped that I would be able to walk out of that hospital smiling as I said goodbye, but when they were ready to discharge me, I did not feel ready to go home. I still could not walk, I had only regained the slightest bit of movement in my face, and I was scared to be without a nurse to wash me and help me with things like getting dressed or going to the toilet. I was mortified at the thought of my family doing those things. But that was exactly what sped up my recovery, I went home and had such determination to be independent again. I mostly used my arms, once wheeled to the toilet I was able to pull myself onto the toilet, or pull myself around the house. I showered on a plastic chair so that my family only had to put me on the chair in a towel and I could do the rest. It took a month of being home and going to rehab as an outpatient (as our medical aid did not cover staying in a rehab and we could not afford it) for me to get out of a wheelchair, I then started walking with a frame, and then slowly on my own. My balance was still terribly off, so I often had to hold onto something, and I would get tired very quickly.
The day I was discharged and had just landed back in Johannesburg. I had very little movement back in my face, and so I could not squint my eyes from the brightness, my eyes watered almost constantly.
The four months I spent at home and the rehab were probably the hardest as I was incredibly bored and frustrated which made me depressed. I felt like so many of my friends made no effort to see me, which was hurtful, I was embarrassed when I went out as people would stare at me, either when I was in the wheelchair, or because I had half a functioning face.
Towards the end of the year I started driving again and was able to get a job in retail. I tried to go back to dancing once, as the physios told me it would be really good for me (I had been dancing most of my life) but it made me incredibly sad as I could not even manage the warm ups without a lot of pain and frustration for what I could no longer do. I am now five years down the line, it took a long time for my face to be what one considers normal, however, I have still not completely regained the movement on the left side of my face, and so I have a lazy eye and a crooked smile. Most people say it is not noticeable, but I am painfully aware of it, especially in photos. I still get a lot of nerve pain, especially in my hips and legs, I have very limited flexibility, but I am still improving, just at a much slower pace now.
Hiking Table Mountain in Cape Town, just under two years after diagnosis, with the same family that took me to hospital.
You can see my lazy eye and crooked smile, two years after diagnosis.
I have been told so many times how incredibly strong and brave I am, although most times it has not felt like it. I would be more than happy to be contacted by any other GBS survivors, I would love to swap stories, as one of the hardest parts of this illness is feeling that nobody understands what you are going through.
January 2018, five years after and still have residual paralysis on the left side
of my face, demonstrated better in the bottom photo.
My Instagram is cat_hall_ and I can also be found on Facebook under Cat Hall.
Thanks for reading.
