How To Live With Excessive Daytime Sleepiness
If you’ve been diagnosed with a sleep disorder and still struggle with excessive daytime sleepiness (EDS) despite treatment, you might be wondering how you can still live a fulfilling life. That’s an answer that I will probably be searching for my entire life - there isn’t a solution that will fix it all, but I’ll share with you what I’ve learned so far.
To start out, I always like to clarify what “excessive daytime sleepiness” actually means. It’s a very cute and harmless phrase for such a debilitating symptom. The technical definition of excessive daytime sleepiness is the overwhelming urge to sleep during the day despite an adequate amount of sleep at night. My definition is a life-draining, soul-eating fatigue that leaves you feeling helpless and hopeless because sometimes it doesn’t go away no matter what you do. To illustrate, I’m currently forcing myself to write this blog entry – not because I don’t want to, but because my eyes are half-closed and I feel like the walking dead. I have the desire to simultaneously stare at the wall and to just sleep for hours. I don’t want to move, think, speak, or be a person – I just want to sleep. Sometimes, there are days where I cry because I’m just so, so tired.
There are medications out there to help with excessive daytime sleepiness and they are life-changing for some people. Unfortunately, they don’t work for me and I’ve tried all of them. This has left me with the lifelong obstacle of figuring out how to get through my day when I often feel like I haven’t slept in ten years. So, how does a person learn to function in this world when all they want to do is lay down or go to sleep? You do the best you can. You learn what you can and can’t handle depending on your level of fatigue. Sometimes, you may have to reschedule or pivot what you planned on doing, while other times you recognize you have the ability to push yourself to follow through despite your fatigue. Depending on your sleep disorder, you may need to make naps part of your daily routine, while there are other sleep disorders where it may benefit you to avoid naps. It’s all about figuring out what is going to be best for you and your needs.
You can also educate the people around you – explain to them what it’s like to live with EDS and how they can help. There are going to be days where you can do everything you need without an issue, while there will be other days when help is needed. You might ask them to help you with daily chores or maybe you just need them to be a little bit more flexible on the timeline of those tasks and ask them to understand that you’re doing the best you can with the energy you have. You might not feel justified in asking for help because you’re “just tired”, but I always like to emphasize to people that it’s more than being tired when your brain doesn’t know how to sleep properly.
The final, possibly most significant, component of dealing with EDS is acceptance. Acceptance doesn’t mean being happy with what you’re experiencing or not doing anything about it – it means that you acknowledge the situation as it is, including what you can and cannot change, without judgment. Despite being unable to change the fact that you have EDS, there are still things within your power, including how you think about your fatigue, and how you take care of your mind and body. For example, if mornings are the hardest part of your day because of how difficult it is to wake up, you may not be able to change that, but you can do everything you can to prep the night before so that your mornings will be as smooth and as simple as possible.
I learned these things with the help of therapy. Being able to process the difficulties of living with a sleep disorder, navigating treatment challenges, and learning more about myself and what I need has given me the chance to live my life differently. Therapy has taught me about the balance of validating my emotions and experiences with having EDS, while also not making my sleepiness into my identity. Living with narcolepsy makes my life somewhat unpredictable because I never know what I’m going to feel like from one day to the next. I hope that one day things won’t be this way for me, but until then, I’ll do what I can to take it one day at a time.
