At 29 years old, on 30 July 2015 my life, and everyone I love, changed overnight. I awoke with flu-like symptoms but thinking that’s all it was, I met my friend for tea. Feeling worse, I went back to my mum’s house so she could look after my (at the time) two young children and I could sleep. By the Saturday, I was rushed to hospital, unable to see my husband’s shirts in the wardrobe three feet away.
Upon admission to hospital, I had a severe headache, photophobia, slurring of speech, severe sickness and ‘episodes’ which were seizure-like where the pain would be so severe I’d count until it subsided. These episodes continued frequently for five days. Several different diagnoses were bandied about: a stroke, acute disseminated encephalomyelitis, postpartum psychosis, but what stuck was Functional Neurological Disorder (FND).
What followed was several weeks in three different hospitals and months of both private and NHS speech therapy, physiotherapy and occupational therapy.
Overnight, I went from being a 100% functional mother of two, wife and full-time restaurateur to not even being able to wash myself! My husband and I had to move back in with my parents, having lived on our own for several years, so my mum could care for me and help him with the children.
I could not walk. I used a wheelchair. One day I said to my husband, ‘this is the last time I’ll be using this.’ I still could not walk, so my family had to witness the humiliation of me climbing walls and crawling to get around. Slowly, I stopped crawling and got around using a walker. Determined not to be reliant on a walker, I gradually started taking steps unaided; a couple at first and then my husband would coach me to reach a goal. Very slowly, I was taking more steps unaided and becoming less reliant on a walker.
Eager to be back in our home, my husband and I agreed to move back in as a New Year goal. In January 2016 we moved back in. I remember being worried about my daughter waking in the night, because I couldn’t rock her to nurse her back to sleep and she was only 10 months old. One night she woke, and after picking her up, I bent my knees and jigged up and down, which pacified her and she went back to sleep. The relief that it was just any movement and the comfort of me picking her up to sooth her was immense.
My children’s illnesses
In November 2016, as I was still recovering from my own illness, my daughter was admitted to hospital suffering seizures; one caused her to stop breathing and she was put in a medically induced coma and transferred to Southampton paediatric intensive care unit. Fortunately, she made a quick and full recovery and was discharged just a few days later.
A few days later, my son was admitted to hospital suffering seizures, one prolonged one he didn’t come out of and necessitated him being placed in a medically induced coma. Fortunately, he too made a quick and full recovery and he was discharged from hospital a few days later.
Then in April 2018, my youngest son was admitted to hospital suffering seizures and had to be transferred to another hospital for treatment. He made a full recovery to baseline.
Then in March 2019 my worst nightmare was realised when my daughter was again admitted to hospital suffering seizures. She tested positive for flu A and after nearly a week of not getting better, we took the decision to have her placed in a medically induced coma and have her transferred to Bristol for treatment. When she was extubated, she had to learn to walk and talk again and basically relearn every skill a four-year-old possesses.
In November 2019, I attended a private appointment where a doctor finally confirmed after four years the FND diagnosis was wrong.
All four of us had to shield during the first lockdown and I think what was particularly hard for the children to accept, was that for the first time they felt ‘vulnerable’. They’ve always known they get ill, obviously, but in between illnesses, they’re absolutely fine so it was difficult for them to see themselves in that category.
Of course, the constant battle of balancing their physical and mental health has been horrendous but I have to hope a better year is coming.
Follow Lucy’s journey.