Hiya! My name is Ruthy, and I live with non epileptic seizures. Seizures of various sorts are very common in young people so I decided to share how I learned to live with them because they affect me on a daily basis in such varied ways. To begin with, it actually took a long old time to get diagnosed!
Well That Was Sudden- Sort Of
It all started back in 2009. I was developing some photos in the dark room at Sixth Form when I suddenly found myself on the floor being shaken awake by my friend. I thought it must have been the fumes, so I wasn’t overly concerned. Over the next month however, I was losing consciousness almost daily, and had no idea why. My doctor’s initial response was, “Well, you’re just susceptible to fainting”. It still makes me laugh to this day! Er well done Sherlock!
Soon, it stopped being just fainting though. I started shaking and jerking badly before and after the fainting spells. I also began suffering from migraines and head pain after I came around.
I was finally referred to Cardiology and fitted with a heart monitor. I was also put through various other tests-but everything came back normal except one thing. My heart rate tripled right before I lost consciousness. At least it was something.
Choosing A Future
My sixth form was useless. The staff there had no idea how to help me and offered no support. I also bombed my AS levels something awful since I was missing so many classes. The most any of the teachers did was to say I could retake them and sit in on last years classes. But I couldn’t do that as they clashed with my A2 ones. My plans for university seemed to be vanishing and my doctor was saying I should consider a break from sixth form.
I felt like I had to make a big choice back then: take a break and wait in the hopes of ever getting better or keep pushing towards the future I so badly wanted. I chose to push. I studied independently like crazy so I’d be able to apply to uni. I begged my school to let me take my exams in a separate room to others so my blackouts wouldn’t disturb other people and I’d be under less stress. They refused. So I panicked like crazy and took my exams feeling awful.
Luckily, all that studying paid off. My university dreams were real! I was so scared about going though, how would I cope, what happened if I lost consciousness around strangers. And I still didn’t actually know what was happening to me. I mentioned my condition on my university registration forms but wasn’t aware of any available help I should have been receiving.
I had an awful first year at uni. Although I was lucky enough to meet some brilliant people, I was missing classes, had no support with my condition, and becoming a VIP in the local A&E. But everything changed at the end of the year. In a bizarrely lucky incident, I collapsed outside the Student Support Office! The team there were horrified I’d had no support that year and promised i’d have it arranged for the next. I could have cried. It was so good to know things would change.
A Wild Diagnosis Appears
During this time, I had been referred to a new cardiologist and had once again come through my tests pretty normal. Afterwards, I was referred to a Neurologist. After I had several tests and an overnight observation, I was finally diagnosed with Non Epileptic Seizures. I’d been on Beta blockers, a medication for seizures, previously but the neurologist didn’t think they were suitable for me. I was pretty much handed a diagnosis and left to get on with life.
Years later and I am now on epilepsy medication. I has removed most of the “fitting” activity but I still endure the collapsing. Curious eh?
Stress, strobe lighting, heat, cold and physical exhaustion can all lead to my seizures. I have some great stories about seizures while out clubbing and needing to be carried out over a bouncer’s shoulder! I have learned to check myself for how tired I am, and to listen to my body more so I end up in fewer bad situations. My university also stepped up and given me a disability mentor and extensions for my coursework along with a separate room for my exams which has made a world of difference.
Things got bad again in my third year. My seizures increased due to stress. To my horror, my university told me I wasn’t well enough to be there and suggested a year out. I was quite offended and refused. I kept at my studies finally passing my IT with Management of Business degree with a 2.1 in 2014.
I think it’s important to go with your gut feeling rather than just doing as told. I knew I could do the degree. I just needed some reasonable adjustments!
Then And Now
After university, I got in to a Graduate program, moved to London, and have kept pushing to find balance between what I want to do and what I can do physically. I work full time from home. Solo travel anywhere is an absolute nightmare for me but my work have thankfully taken that on as a reasonable adjustment. (as they are legally obliged to do) I still live in the hope that my disability might ease off one day. In the meantime, I’m doing my best to make it work.
I hear about a lot of young people, women especially, who have trouble with seizures and fainting. I hope my story can offer a bit of comfort that while these conditions are life affecting and really suck, they don’t need to rule your life.
Achieving your dreams is totally possible if you find the right balance for you!
Ruthy is a twenty something geek masquerading as a business consultant. She spends her conscious time costume making, pole dancing, gaming and blogging over at http://d2shine.co.uk