Juggling Chronic Illnesses
You know when you think you have everything figured out, and then life throws you a curveball? Well, the last 18 months have been just one curveball after another for me!
Once I felt like my sleepiness was being well managed, I started looking into my chronic pain issues a bit further with my doctors. After searching for answers about why I was in pain my whole life, I finally got an answer this year.
I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). What has this got to do with narcolepsy, you may ask? Well, apparently a lot more than I first realised!
What's causing my symptoms today?
Every day I get to play a fun game of "What's causing my symptoms today?" Am I sleepy and need a nap because of my narcolepsy, or am I fatigued from my dysautonomia and pain? Was that an episode of cataplexy, or did I sublux my knee or hip?
Honestly, sometimes I don't know the answer. It can be a guessing game of trial and error to see what helps in any given moment.
Is this real?
The problem with having so many overlapping symptoms is that it makes my brain question their validity. For instance, when I have a cataplexy attack that causes me to drop to the floor, I will also generally sublux or dislocate one of my joints. But then my brain questions whether the cataplexy even happened or if I just stepped weirdly and fell because of the dislocation.
I try to remember that ultimately, it doesn't matter, and I treat the situation the same regardless of if it was cataplexy or a dislocation first. But it contributes to the little narrative in the back of my head that is telling me I need to prove that I am sick.
Fear of not being believed
If I don't know what has occurred, then how can I prove I have narcolepsy? I am constantly afraid that someone is not going to believe me and the struggles that I have been through.
After so many doctors told me it was all in my head, I started to be afraid that that was, in fact, the case. Maybe everyone is this tired all the time? Maybe everyone falls asleep at the computer or while driving?
Your experience is valid!
This is as much a reminder for me as it is for anyone out there who needs to hear this. Your experience is valid! Even if you don't have a diagnosis just yet, it is STILL valid! Even if you have multiple chronic illnesses that all affect one another, each diagnosis is STILL valid!
No one ever has the right to question your experience. You are the only person who knows what it feels like to live in your body, and you don't have to prove anything to anyone. What you are going through is real, and you deserve to be heard and understood. Keep fighting! You are not alone!
What is the hardest part of coping with narcolepsy?