Succeeding With Narcolepsy
Famous Narcoleptics and Famous People with Narcolepsy
Jessi Lott - "This is me and my nephew, he is my pride and joy at the moment"
Jessi Lott - "This year I played rugby, its the first time I've been part of a sports team since being diagnosed"
Occupational Therapy Student
Dunedin, New Zealand
"I was also falling asleep in the MDT meetings at the hospital, and luckily the neurosurgeon picked up on this and pulled me aside...".
All my life I wanted to do something useful and helpful for people, I didn't ever want to be stuck in a dead end job doing the same thing every day. I also always had a fascination with big machinery diggers, dump trucks, trains and planes so decided that when I grew up I wanted to be an aeronautical engineer (building aeroplanes) and in order to do this I needed to pass 3 years of physics in high school in order to study physics at university. Thankfully loved physics. I was always good at maths and numbers, and physics was easy to pick up and understand. I passed my first year of high school physics with A's making me top of the class in 2008. For the first half of 2009 physics was great and I was still top of the class until March/April when I found myself unable to stay awake and focus. I would sit at the table and my eyes would droop and my head would just fall in funny positions. Sometimes I could hear everything around me and be unable to respond and other times I was completely asleep and had no idea until I woke up confused as to why we were talking about totally new things. Initially, I passed this off as the result of problems at home making me unable to sleep during the night, but as this was occurring daily at school in many of my classes I became concerned and went to the doctor. They did some blood tests and found nothing wrong so they taught me how to relax myself at night in order to sleep better but this didn’t help. Next they made me do a test with a sleep mask and monitor to test me for sleep apnea but still found no issues. These tests went on for ages without finding any issues so I gave up with the doctors. While the doctor stuff was going on I was struggling to cope with my schooling. I was getting behind in all my classes, including physics. I was still passing, but not with the grades I would of liked. My first ever C was a major shock to me and I broke down. I lied to my parents about my grades as they were difficult to talk to and unsupportive and didn’t see anything other than an A as a passing grade. This lying continued all throughout 2009 where I told them my exam results were a lot better than what they actually were to avoid disappointing them. I never told them anything was wrong medically In 2010 I only had one more year of high school and physics to go until I could go and study physics at uni, but things were getting increasingly worse. Some days I didn’t go to school because I physically didn’t have the energy, and if I did go I would sleep in classes, and my teachers were very concerned. This year was the make or break year and I broke. I tried to keep up with my classes the best I could, and passed my assignments throughout the year, but as the final exams approached my sleep and lack of energy impacted my ability to study. I failed my physics exams and my goals were crushed. I was so gutted. I also tried out for the army shortly after this as I thought that something physical would help keep me alert and awake. I passed my /English and Maths papers in 2010 so this meant I was eligible to sign up. I did all the testing to join, passed the physical and written, but failed the medical due to the sleep problem which had been occurring for two years now, which I still had no diagnosis for. I was referred to a specialist but was unable to make the appointment as I had no way to get there, My mum had moved away and my dad was often working and unable to help me out. I spent all of 2011 waitressing part time and this was depressing. I felt that this random sleep issue had prevented me from leading a meaningful fulfilling life. People often thought I was lazy and unmotivated but in all honesty I just didn't have the energy to do anything. It was the worst year of my life, when I wasn’t working I was stuck at home in a bad relationship. I was living with my boyfriend and we argued a lot. Unfortunately, it was the only place I could live at the time and had to put up with it. Between that, a boring job, and health issues everything became too much and in November I broke down and behaved in a way that led to me being arrested and locked in the cells for a night (I was attacked by my boyfriends friend and defended myself with a knife because no one else would help me) and having to face court. My court case carried on for 3 long months and this was very stressful on me and I realized I couldn’t live life like that. I decided to look into other options of things I could try studying and just see where I get. I decided to sign up to study occupational therapy, as it sounded interesting and rewarding. I began my study in Feb 2012 and found the course interesting and there was quite a lot of physical learning which helped keep me awake. I enjoyed it, so I was able to make myself get out of bed in the mornings. Everything was going well; with fewer sleep attacks until placement. My first placement was in Timaru hospital in may 2012. it was a community placement meaning I was working with people in their homes. The first week went well, but it snowed the second week, and people had their fires and heaters on. Sitting on their couches in the heat made it difficult to stay awake and I would be dozing off within minutes, this made me look bad. I was also falling asleep in the MDT meetings at the hospital, and luckily the neurosurgeon picked up on this and pulled me aside for a bit of a chat. We talked about my sleeping and what had been happening at school over the last few years. Then he set up an appointment for me to do a sleep study in Dunedin when I returned home in July. I did the test in July and the results came back in August. They told me it was a condition called Narcolepsy, which I had never heard of before, but they told me it effects REM cycles and chemical levels in the brain. They said it is what had been causing my difficulties in class. From there we began talking about medical options to help me control this. From there things began to get better, my studies improved significantly and I was able to explain to my lecturers why I had been sleeping in class, and they were able to help me from there. They allowed me to take recording devices to class to catch up on things I miss when I'm asleep and allow me to play with things in class to keep my self awake. It is now the end of 2013 and I can say that things have gotten better for me, This year I ended my abusive relationship, and ended up meeting a very lovely guy who makes me happy, joined a sports team and learnt how to play rugby, got myself a job and of course I have passed my second year of occupational therapy. After a long road of struggling I have finally been able to begin sorting my life out and getting back on my feet, and think things can only get better from here.