Accepting Your New Reality
I have recently just finished my master's degree at university. When I was younger and doing my GCSE exams at secondary school, I was extremely career driven. My life goal was always to have a really successful career, and this was something that I was always working towards. Consequently, I was really determined and always worked hard in school.
I was diagnosed with narcolepsy just before going to university, and even there, I still very much felt the same. I was still determined to work towards a successful career. However, as time has gone on, I think my priorities have changed. And the reason for that is because of my narcolepsy.
When I was younger and first diagnosed, I was lucky in that I could pretty much push through the sleepiness and the symptoms. I could still keep up with educational and social commitments. I was able to engage in several social activities a week as long as I took medication and had naps.
Now, however, the fatigue completely takes hold of me. After a day of social activities, I can find myself completely wiped out. Some days my whole body feels physically heavy. I also suffer with chronic pain, and I believe some of that is linked to my narcolepsy.
Accepting my limitations
When I was first diagnosed, I was determined to not let narcolepsy stop me from doing anything. I did not really accept help, either, and just tried to push through. However, as time has gone on, I have been forced to accept my limitations.
Now that I have finished my master's degree, I am contemplating next steps to take. In all honesty, I don’t think that I will be able to work full-time again. I have worked full-time in the past and was able to push myself through, but now I do not think my body would be able to take it. As much as I do not want to, I have to accept my limitations.
I could push myself to do full-time work, but the work I was doing would suffer and would not be of any quality. Additionally, it would take a toll on everything else. I would have no life when I came home and would struggle with basic things such as cooking and eating, washing etc. I would probably have to spend weekends resting.
Struggling with self-worth and guilt
Narcolepsy has forced me to change my views. I have had to accept that I cannot be so career driven. I cannot put so much energy into my career because it means that I would have no energy at all for anything else. This is extremely difficult for me, as I have spent so many years of my life working towards having this extremely successful career. I also got a lot of self-worth from doing well at school and university and working towards a career.
Now that I cannot pursue this, I struggle with it and feel guilty because I feel like I should be able to work full-time and pursue a career. However, I have had to adapt and adjust my views. I have had to learn and come to the realisation that work does not have to be your whole life. We do not have to buy into this "hustle" lifestyle where our life revolves around work.
I need a flexible work schedule
Don't get me wrong; I'm lucky to be in a situation currently where I can have the option of not working full-time. I am still living at home with my mom, so I do not have bills to pay, and I currently do not have to worry about the financial aspect.
However, it does worry me for the future. I worry about how I would be able to live somewhere where I am responsible for paying bills, etc. Ideally, I need to work a flexible schedule where I can choose the times that I work to suit me.
As a result, I am currently pursuing a new venture of being self-employed. I’m going to try setting up a virtual assistant business and continue with my writing.
Where are you in your narcolepsy diagnosis journey?