Limitless, Yet Limited

I have a thirst for learning. I am always interested in developing a new skill, doing something new. I get restless and bored with the mundane. I crave a little excitement, connections with people, and travel. If I was not so sleepy and exhausted all the time, I would be moving a mile a minute. I imagine myself as someone who would be constantly on the go, working full-time with a full social life, going to the gym several times a week, and travelling several times a year.

It's hard to watch people living without limitations

It can be discouraging to sit and think about all the things I wish I could get through before I crash. Remembering the times when I was doing a lot of the things on that list, I wish I could still do them today.

It can be difficult to watch people without my limitations. They seem happy not trying to do all the extra things I think I would be doing if I were them. It can make you ask the question: Why do their options and possibilities seem limitless yet unobtained, whilst my desires are limitless yet... limited?

The limits of living with narcolepsy

Often it feels like my narcolepsy is limiting me, like it is an invisible wall or barrier that is constantly in my way, always impeding my efforts. My narcolepsy symptoms started when I was in my mid-to-late teens. It has impacted my entire adult life. Sometimes it can be hard to remember how life felt without it.

It made studying and exams harder as a student, and before I was even diagnosed it felt like the then-unknown problem was eliminating my long-held dream of becoming a lawyer. Everything became harder. My grades suffered. What I had been working toward for years was suddenly out of reach, still in sight but blocked.

Modern technology has helped me feel less isolated

Since I was diagnosed so early, I sometimes find myself jealous of other people with narcolepsy who were symptomless into adulthood. They started their careers and families before any diagnosis. It feels like they got the chance to achieve their dreams before having narcolepsy interrupt them.

Although I feel like my narcolepsy has been working against me most of my life, I think I have learnt to adapt rather than just conform. I am still a social person. The success and availability to connect via social media mean that I have been able to connect and maintain friendships all over the world. So, I have not lost friends just because they have migrated, and I have been able to find an amazing narcolepsy community online. Modern technology has helped me to create a world where I do not feel isolated with my narcolepsy and instead know dozens of people who understand my struggle, encourage my dreams, and not only see but understand the complete me.

Adapting to barriers

Instead of letting my narcolepsy limit my international travel, I adapted. I made changes to get around the travel barrier. I have had to overcome some of the guilt that comes with having a hidden disability and accept the help so that I could travel without being completely exhausted and needing days to recover after flying.

When it comes to my desire to continue learning, I have learnt to trust myself and try, even if it seems unwise to those around me. Often when I have started a new job or course of study, I will hear voices reminding me that I am already struggling to do all I am doing now. That it is hard enough for me to stay awake, so why add more to my plate? That after a very busy day, I am wiped out for a day or 2. I’ll be reminded about the support I need to just get through an average day, to wake up and make my appointments. I will often hear, "Have you thought this through?"

I am still proud of myself

Being able to push through to achieve a new skill or try something new is something that has made me proud throughout the years. I am happy that I can say I have worked in various industries even if just part-time. Whilst the wall blocking my law dream seemed insurmountable, I am happy and proud that I went to university, that I went on to study sign language and, most recently, barbering.

I know to others it might seem crazy to continue to push against the wall, to have a list of things to do and achieve that to them seems a little too much. For me, there is something great about that feeling you get when you have achieved the seemingly unattainable, about dreaming limitlessly even when limited.