Nicole's Story | GBS
- Chris
- Aug 1
- 5 min read
It feels mad to be writing my Guillain-Barre Syndrome story down as I never thought id do it. I’m a very private person but if my story can help one person to find strength or hope then it will have been worth it.
I was a healthy, happy single mum, to a beautiful 4-year-old little girl.
At Christmas 2020 I got ill, during a world pandemic. I was told it was covid, but I knew my symptoms didn’t match up. I had the worst headache; I couldn’t look at light and my legs were getting weaker by the day. I had terrible pins and needles in my hands and feet, and my strength was deteriorating.
After seeing many medical professionals, I finally got an appointment with a junior doctor who saved my life.
She immediately told me I had meningitis and needed a bed on the infectious diseases ward. I was transferred and was treated with intravenous antibiotics for bacterial meningitis. I have never felt so poorly in all my life. I was sent home on a Wednesday, still poorly, but the hospital didn’t want me to catch covid on top.
By Friday morning I woke up and couldn’t move, I thought I was going to die. I was taken to hospital and then sent to another one for diagnosis. I was so calm, I remember talking to my daughter on the phone and wondering if this would be the last time I spoke to her.
When I got to the hospital where I would spend over a month, reality set in. I noticed that every uniform said ‘stroke unit’ on it and I began to cry, thinking I'd had a stroke. I was reassured that that was the neurological ward and didn’t mean I had had a stroke.
After every test under the sun, many blood tests, which is my phobia, MRI and a nerve conduction study, I was diagnosed with Guillain-Barre syndrome on my 27th birthday.
I was told that it affected 1 in 100 000 people and they weren’t sure what caused it, it was just unlucky. I'd never heard of it and couldn’t even use my hands to google it.
I asked if I was going to die and never got a straight answer, I was just told that they would do everything they could to help me. I was so scared. My daughter had never even spent 24 hours away from me and I'd already not seen her for over a week, she couldn’t visit me due to covid rules and the neurologist didn’t know if or how long it would take for me to recover.
Guillain-Barre syndrome is a rare, auto-immune disorder, where the immune system attacks the peripheral nervous system. I was told that a lot of my nerves had been damaged by the disorder and the first line of treatment is IVIg or liquid gold as the Drs said, it was started the same day - 2 bottles for 5 days.
My body reacted to the treatment so I had to have it really slowly, it took 10 hours each day for me to finish the 2 bottles. I laid in hospital for 4 weeks, my face dropped, I couldn’t eat or drink, I got a blood clot in my lung and my lungs were weakening. The Drs kept saying that it was my positivity that was getting me through but I knew that it was the thought of getting back to my little girl.
I eventually got medically fit and went to the neuro-spinal rehabilitation centre to learn how to do everything again and gain some strength. They were miracle workers, I had incredible physios, neurologists, an OT, I was offered therapy, and the nurses were lovely. I’d gone from fully independent, to all my dignity gone, being cared for.
As the weeks went on, I was improving, I learnt to sit up, feed myself, stand and then walk. I was using a wheelchair and crutches.
The day I finally got home to my daughter, I will never forget, but it was hard I cried so much when I cuddled her and I had this new zest for life, I wanted to live more than ever.
Life as I knew it was changed forever, I thought as soon as I got home it would all be a distant memory, but no, I have permanent nerve damage and scarring, I take multiple daily medications. I still 4 years on see neurologists, have spells of physio and see OTs. I use FES-functional electrical stimulation for footdrop and wrist splints at times.
Not a day goes by when I am not feeling like I’m being electrocuted by the nerve pain. Some days I feel so weak, others I drop everything I pick up, but I look fine and that’s where people think I’m fixed and assume.
I recall the Drs telling me that I may not be able to carry any more children while I was ill, but I didn’t pay much attention, I just wanted to return to my girl.
In January 2023 I met the love of my life. He took on my daughter and we became a happy, crazy little family. We started to talk about having a child. My periods had returned to normal, but I told him what the Drs had said and he was supportive.
There was no information on the internet about having a child after GBS and my neurologist didn’t think it was a good idea, but I knew that I needed to live, I wanted to have a child with the man I love, just like everyone is entitled to.
I got pregnant very easily and had a very scary, long 9 months. It was classed as high risk and was consultant led. I couldn’t keep any food down and was sick constantly and hospitalised on drips, but I got through it.
We were told many different scary issues my baby may have due to having to take some of my medication during pregnancy due to the amount of pain I was in and luckily, I gave birth naturally, to a beautiful healthy baby girl.
My family is complete, I have slowly got my social work degree, and I thank my lucky stars every day for my family, the NHS and to live.
