International Womens Day
Life changed for our colleague Laura Rawlinson in May 2019 while she was on maternity leave. She didn’t know it at the time but that is the day she became a victim of Miller Fisher syndrome, a very rare nerve disease where the immune system attacks the body’s nervous system. Today, on International Women's Day, we’re sharing Laura’s extraordinary story of hope and determination and we think you’ll agree it’s an inspiring read.
“I woke up as normal to hear my little nine-month old Ella crying. I went to soothe her but knew straight away that something was wrong. I had double vision so kept blinking which didn’t help and as my husband James was away on business, I called my mother-in-law to help with Ella. I had a nap, hoping my vision would return to normal, but it still hadn’t by that evening so I called 111 and they told me to go to A&E. The eye doctor there could find nothing wrong so told me to come back the following day if things had not improved. Rather than improve, my symptoms had got worse very quickly by the next morning. My hands and arms were tingling and felt quite numb and my speech was slurred. My family thought I was having a stroke and by the time I was driven back to the hospital I couldn’t walk and was helped out of the car into a wheelchair.
“I had every test under the sun and James was called back home, all the time my condition getting worse by the hour to the point that I was unable to swallow so was choking on my own saliva. I had to have a lumber puncture to drain fluid from my spine, was medically sedated to keep me alive and put on a ventilator in the intensive care unit at East Surrey Hospital, where I stayed until I was stable enough to be moved to the high-dependency unit.
“Miller Fisher syndrome can happen to anybody at any time. Apparently, my attack was worse as my immune system was stronger to start with as I was breastfeeding, but the prognosis was that I should make a full recovery in time. I’m pleased to say that although I am not 100% recovered, following a lot of hard work and rehabilitation over the last year, I have achieved more than I could have hoped for, despite COVID-19 throwing another spanner in the works.
“In February last year I was at the Royal Hospital for Neuro-disability in Putney, undergoing rehabilitation, re-learning how to do everything for myself, from breathing and talking to regaining control of my bladder. I wasn’t able to feed myself and although I could stand up for a very short time, I was still in a wheelchair. At weekends I was allowed home but when the pandemic started to take hold, the hospital said I would not be able to have any visitors for the foreseeable future which was very difficult to hear on top of everything else. I decided not to go back and continue my recovery at home. As a family we weren’t completely ready for that full-time but James was working at home and between the six sets of parents and step-parents we devised a six week shift pattern so they could help us and Ella but also safely self-isolate in between visits too.
“Like everyone else, I’ve had to get more used to the virtual world! My physiotherapy sessions largely moved online but last summer I was able to have some in-person contact wearing protective clothing. I have used various bits of kit like a zimmer frame and walker to help me and a massive milestone was completing 180 lengths of my house – one for every day I was in rehab. I haven’t needed the stairlift since Christmas and my priority now is to maintain and build my strength up.
“Today I am now mostly independent, able to feed, wash and dress myself and walk unaided. I have had a couple of falls as my balance still isn’t quite right but luckily I haven’t hurt myself. It can be quite terrifying but like all parts of my rehabilitation, I have to try and get the balance right between pushing myself and knowing my limits. Talking of limits, I still can’t style my hair so James is helping me with that but I guess a few of us are having bad hair days anyway in lockdown!”
It’s been a very long and painful journey that I’m still on and as well as my physical therapy, I’ve had to work on my mental recovery too through psychology sessions, using different coping strategies and trying to achieve small goals. Being away from Ella for such a long time at the start of her life was devastating so now being at home with her and being able to hold her is very special.
“It’s been great to start a phased return to work as I’ve been away for such a long time. One of the hardest aspects to deal with was that my brain was completely unaffected throughout the whole time. I could hear people talking to me even though I couldn’t speak back and the mental boredom was really hard. I’m now using voice recognition software and touch screens and need to build up the stamina and feeling in my hands, as well as not being used to much screen time. I’m still recovering but hope to make a positive contribution to the team and hear about everything that I’ve missed.”
Welcome back Laura - we're so proud of you.