Felicity Gregson's blog

February 2020

My name is Felicity, I’m 17 years old, and I’m from south east London. I have been a patient at Evelina London for 7 years.

It all started around the age of 9 when I would fall asleep randomly and whenever certain emotions were triggered – like laughter or crying - I would collapse and was unable to hold myself up. These episodes were short but once I fell asleep, there was no waking me up! I was under the care of my local GP for two years. They were very unsure as to what was going on due to my symptoms being so rare. Initially, they had considered that whenever I experienced these episodes, I should have a can of full fat Coke because the caffeine would make me more alert! It did not help.

Eventually, I was transferred to Evelina London where I was introduced to Dr Michael Farquhar in the children’s neuroscience department, who has been my doctor ever since. After a few appointments, I underwent an overnight sleep study which consisted of multiple wires being glued to certain areas on my body to pick up my sleep pattern and rapid eye movement (REM). The wires were very uncomfortable and sticky but once I took them off, it was a huge relief. This proved that I had narcolepsy, which is a brain condition causing you to suddenly fall asleep at random.

With narcolepsy, cataplexy often comes with it – this is when a strong emotion like laughing makes you suddenly collapse, which explained my loss of muscle tone when laughing.

Luckily, once I was diagnosed I was able to look into which medication was best for me. It took me a while to get used to it and to find what dose best suited me, but it has been a dream ever since.  

There are multiple examples of where living with narcolepsy has been difficult. It used to be impossible to stay awake in the cinema as the seats were too comfy and it was dark so it felt like a sleepy environment! It would be frustrating but once I was prescribed medication, it was much easier to deal with.

I often see the positive side to things, as a lot of my episodes are funny due to the weird places I have fallen asleep. For example, my mum told me to take the washing upstairs and come back down for the next load. When she realised I’d been gone unusually long, she came to find me – I had sat down on the stairs and decided to take a nap, using the washing as a very comfortable pillow!

As for my sleeping pattern, I have to get a certain amount of sleep every night or else it is difficult to get up the next morning. I have a set bedtime of 9:30pm every night and my alarm goes off at 7am the next day to ensure I have enough time to get ready and get to school. I can often be late, but my school is very supportive, and we have come up with a plan as to how to work around it.

When doing my GCSEs, I found that my narcolepsy was a lot worse as the stress made me even more tired than usual. Unfortunately, there is no cure YET, but the medication is very effective and answers are always developing. I have appointments at Evelina London every six months and as of September, I will be transferring to the adult clinic!

I try not to let it stop me doing things that I love, such as netball – I play for my school team and we compete in regular matches.

I am not yet sure as to what career I’d like to pursue, but I think I’d like to follow the psychology route. Helping others and acting as a listening ear for anyone is what I’d like to be able to do, and I think psychology is the best option to achieve this. I am currently studying psychology, photography and French for A-levels, with psychology being my favourite subject. I also have a weekend job in a café which is very enjoyable.

I have a little sister who is very energetic so being sleepy pretty much all the time becomes very annoying for her; however I believe that is what sisters are there for, to annoy each other! She is an early bird which I definitely am not, but other than that we usually get on very well. She is very supportive and helps me a lot but it becomes very frustrating for her sometimes. But we always find a positive side to it.