As a young girl I was always physically active, I competed nationally in gymnastics and trampolining and spent any free time I had playing sport. When I turned twelve, it was time to go to high school. I had stopped competing in gymnastics and trampolining and instead, had turned my attention to playing school field hockey. The first six months at high school passed by in a flash and as the months grew colder, I found myself coming down with a virus. Relieved that I didn’t have to hand in a piece of homework I wasn’t happy with I settled myself in for a day of feeling rubbish and then, tomorrow – back to school! However, days passed and what felt like an elephant lying on my chest, did not budge.
My body came to a grinding halt, and this became the beginning part of my journey with chronic fatigue syndrome (CFS). After an initial rough period, post virus I began to slowly pick up sport again. I would walk to the tennis court wall every day and get lost in the cathartic motion of hitting the ball back and forth, back and forth. By August, I had gotten so well that I joined my peers back to school full time for the start of second year.
Not one for missing out I would refuse to sit out of P.E and even joined my position as centre striker for the school team again. When the winter months arrived, I fell ill with another infection. Panicked that this meant that I would become unwell again, I pushed through the virus and went on the school ski trip after a few weeks of off and on sickness. I joined my friends on the bus and we all sang songs and got ready for the exciting sense of freedom this trip brought. Unfortunately, during the trip, I began to get sick and worried that telling a teacher would mean I would have to go home, I hid it from everyone and went on with every single activity we had planned for the week.
Arriving home, I remember feeling numb. My body had crashed in quite a style, and I spent weeks really unwell. It was after these initial weeks that I was referred to a CFS specialist. The next few years I spent intermittently in and out of school, my attendance was low, I couldn’t play sport and I often couldn’t see my friends. A very kind teacher with experience of CFS himself, would come to my house and give me maths lessons.
I would quite often push myself to join in things that required high intensity energy, this had the result of making me quite unwell for week (s) after the event. It was quite different to the life I had when I was well.
At fifteen I started to have funny symptoms; I didn’t think too much of it as CFS encompasses a lot of symptoms underneath the term. But, on New Year’s Eve twenty-fourteen, I was in my Granny’s bathroom, and I blacked out and fell. I had been experiencing some bad pains and my body seemed to shut down with it. I cooled myself down and after a while I re-joined the party. After the party, this blacking out sensation would happen every now and again and by the springtime my walking had gained a wobbly gait and the fainting-like episodes evolved into what we thought, were panic attacks.
By the summer I had visited an A&E doctor on a trip to Scarborough as my walking had decreased and my attacks had gotten worse, but he didn’t know what was going on. When we returned home my attacks started to resemble seizures and so I spent a spell in hospital, where after ruling out epilepsy – I was diagnosed with conscious fainting.
After discharge, I continued to try and see my friends, but my episodes started to get more and more regular, featuring in my day at least once. This went on for a month or two.
One night I was sitting in bed watching television when all of a sudden, I had an episode. When I awoke from the episode, the next one had started and then the next one and so on.
It was a very strange sensation, and one I was about to get used to. I felt like I was swimming in the depths of the oceans water and every time I drew closer to the surface, someone would grab a hold of my foot and I would float down again.
The next few years were spent in and out of inpatient hospital. After my second hospital stint, I got given the diagnosis of ‘Functional Neurological Disorder’. It was a relief to get a diagnosis and at no point did I question if it was the right one, it fit my symptoms to a T.
My episodes were non-epileptic seizures, my walking was a gait problem, my intense pain a part of the disorder and my numbness was the start of my experience with functional limb weakness.
After a while my seizures were consistent, I would experience my legs and arms unable to move at all and I struggled to walk and sit up. I was put in hospital for an inpatient stint, where we tried tapping (which helped but became hard to manage when the seizures were shaky or if my hands were unable to move), sedatives and teeny tiny bits of physio. By the six-week marker we decided on a change of plan, and I returned home whilst I waited to go to a rehabilitation hospital.
The rehabilitation hospital was where I got better you will be pleased to know!! I spent ten months there and during that time, my seizures had changed drastically. I had begun to experience hours of unconsciousness, which yes – was extremely scary but, after months and months of physio, neuropsychology, occupational therapy, input from neurologists and coming off ALL my medication (a choice a very bold sixteen-year-old asked for – I think I was a different person when I was on sedative medication!!) I came out of my unconscious state in a chair. This was a real turning point as I had yet to stay conscious in a sitting up position since arriving to the rehabilitation hospital about six months ago.
The moment this happened a gaggle of smiling nurses appeared around me, shocked! I immediately asked them if I could try to stand up. To which they replied, ‘hold your horses’ girl!’
That night I stayed up in my chair as long as possible so that my dad could see me up, he walked into the wards doors and there I was – sitting up smiling!! I said ‘oh helllooooo’ to him, to which he gave me a very baffled expression in reply!! That is a night I won’t forget in a hurry.
After a few more months of learning to stand again (so that I could surprise people with standing hugs!) and learning to walk again (I learnt to walk by using music to get my walking pattern going – shout out to Paolo Nutini!). I was set out in the big ‘ol world!!
I continued my outpatient therapies and went back to school to get one qualification. At that time, one class was all I could manage but I left that year with a really good relationship with the teacher, a good grade and the school award for having ‘strength, determination and resilience to overcome difficulties.’ Quite a different year to the one I had prior!
It’s now three years later and after attending a widening access course, I am in my second year of university. The university I study at is actually the same place a lot of FND research is conducted– which feels to me like a nice full circle!!
During lockdown I regained some energy and I have slowly started to play tennis again. Running has not quite come yet, but sometimes when a ball is just a little out of reach, I can feel my feet moving as a reaction, without me even having to think about it.
I wanted to write my story to show that recovery is possible. I wish I could give more information about what it really was that made me better, but it just felt like a switch that flicked on. When I became conscious in the chair, it felt like I was regaining more and more pieces of the jigsaw puzzle. I think that the initial first pieces of the puzzle are the hardest to gain, but once you’ve started you can see the beginnings of a whole picture forming.
I am seizure free for four and a half years (and counting) now and something that took over the narrative of my life for so long, is now something I don’t even have to think on now.
A lot of good has come out of the bad too. I think I have a good outlook on life, I know in my past I have been physically tough, but now I feel like I have showed myself how brave I can be mentally.
I am very lucky to have such a good support network and I am very thankful to be where I am now. I hope this story is comforting to anyone experiencing something similar and I hope that you find your switch.
We will be re-directing you to the University of Edinburgh’s donate page, which enable donations in a secure manner on our behalf. We use donations for keeping the site running and further FND research.