First thing on Monday 7th July 2014, I woke up and knew immediately something was very wrong. I was experiencing weakness in my legs and couldn’t walk properly. With help from my pretty new boyfriend, I stumbled into a taxi and asked for them to take me to St Thomas’ A&E. Following extensive tests and scans, I was admitted, and by the evening, I could no longer walk or stand, and weakness had started spreading to my arms.

By the morning of Tuesday 8th July, I was given the diagnosis of Guillain-Barre Syndrome (GBS). I didn’t know anything about it. I couldn’t even pronounce it. Naturally, I googled it and found GAIN’s website and learnt a bit more. A rare 1 in 100,000 autoimmune condition causing nerve damage and paralysis, and in my case, triggered by a recent food poisoning infection. The St Thomas’ medical team warned me that it could get worse before it got better, and it did. Over the coming hours, weakness spread to my whole body and face, and started impacting my breathing (forced lung capacity). I was taken down to Intensive Care for monitoring with the possibility of needing to intervene to support me breathing (which thankfully wasn’t necessary). I was started on IVIG treatment (an insanely expensive blood treatment) which stopped me from getting any worse. I was completely immobilised and would not get out of bed for quite some time.

After just over a week in Intensive Care and their High Dependency Unit, I was moved to their stroke ward (the best fit for the symptoms I had and their ability to offer daily rehab support). As the only GBS patient, trainee doctors would come and try diagnose me based on my symptoms as practice. I was surrounded by older patients who had suffered strokes and a few very sadly passed away in beds next to me. I was young, but terrified of what my future and recovery would look like.

I spent 3 months under a fantastic team on that ward who helped me re-learn the basics – day by day I could start to move my hands, sit up and use an electric wheelchair, shower with assistance, stand with assistance, start taking back my independence with basic personal care - drinking, eating, dressing, brushing my teeth, brushing my hair, using a toilet again and not a bed pan, take my first steps on a huge assisted walking machine. As a 25 year old, I had reverted to the basic needs of a baby. It was slow. It was isolating. It was embarrassing. Along with the nurses and doctors, my mum, sister and boyfriend had become my carers and I needed help to do the most basic tasks. My dad put his life on pause to be with me in hospital.

I applied to go to Queen’s Square Neuro Rehabilitation Unit and was accepted. An ambulance transferred me and I started an intensive programme of physio, occupational therapy and psychology sessions. It brought a new structure which was so welcome and my days were full, as if I had started a rehab school. I also met other GBS patients (and others with a range of neuropathic conditions) which was hugely helpful to share experiences.

After almost half a year in hospital, in December, I was finally discharged and could go home as a wheelchair user, walking some distances with a zimmer frame, plenty of adapted disability equipment (sofa raisers / shower stool / toilet frame / transfer board) and enrolment to a further daily intensive physio programme in the community in Brixton.

From that point, I went back to work with assistance from Access to Work transport, starting building my confidence going out and eating out, using my wheelchair, using public transport with ramps and assistance, completed a 5k walk with my sister and started a new job with The Prince’s Trust. I eventually dropped the wheelchair and zimmer frame for crutches, then moved to a walking stick and finally walked independently. This process took years.

I have come a long way and have been so lucky to make this level of recovery as some GBS patients will never walk again. To this day, I have permanent nerve damage in my feet (and suffer with foot drop and balance problems), have weakness in my legs and hips and have weak hands and a resting tremor. I still struggle with various daily activities, but have also found plenty of adaptations. Bleach bottles and child locked medicines are still a pain and I still regularly trip up on my own dead toe!

So, what now? Ten years on from my diagnosis, I have come such a long way and have become aware of many more people affected by GBS; a hairdresser I met in Queen's Square who couldn't use his hands; another patient who was the father of two young children who left in a wheelchair who feared he would never walk again; a family friend’s toddler who couldn't even communicate or understand what was happening to her; a family friend’s mother; a colleague’s girlfriend. You start to realise that whilst GBS is rare, it's there and it's devastating and it's under-researched.

It is time for a challenge and to give back so I am going to climb the biggest peak we have in the UK, Ben Nevis. For many climbing Ben Nevis would be a nice day out. For me, it will be a big challenge (requiring support from my then boyfriend and now husband, Tristan) and walking poles to help my poor balance due to permanent nerve damage in my feet and muscle weakness.

I have chosen to raise funds for GAIN (Guillain-Barré Syndrome & Associated Inflammatory Neuropathies) – a charity who provide support for patients receiving these diagnoses and their families, and crucially, invest in research into these rare conditions. I have recently started volunteering for GAIN and they have big ambitions to transform support.

If you are able to give in any capacity, however small, I will be incredibly grateful, as will GAIN.

Thank you,
Steph