Living with narcolepsy, the frustration of setbacks, and learning not to take the good days for granted.
There is something incredibly difficult about finally beginning to feel better, only to be reminded almost overnight of just how bad things used to be.
And I don't think you can fully understand that feeling unless you've lived it.
Living with narcolepsy has been a journey. One that, for a long time, I didn't even understand myself.
There is a difference between being tired and being so overwhelmingly sleepy that staying awake becomes a battle. And I'm not talking about needing an extra cup of coffee or wishing you could squeeze in an afternoon nap.
I'm talking about wanting desperately to be awake, to be present, to participate in your own life, and feeling like your body has other plans.
For a long time, not knowing what was happening was difficult. You know something isn't right, but you don't necessarily have the words to explain it. And how do you explain something to someone else when you don't fully understand it yourself?
Then, finally, there are answers.
And with those answers comes hope.
Not necessarily a cure. Not a promise that every day will be easy. But an explanation and a treatment that begins to make a difference.
And little by little, things start getting better.
You begin to remember what it feels like to function. To make plans without constantly wondering whether you'll be able to stay awake long enough to follow through. To do the ordinary things that most people probably never give a second thought.
And you are grateful.
So incredibly grateful.
Because when you've experienced what it feels like to lose the ability to do some of those ordinary things, you develop a different appreciation for them.
And then, just like that, the medication is on backorder.
Not because you forgot to refill it. Not because you decided you didn't need it anymore. But because the medication that has been helping you function simply isn't available when you need it.
And suddenly, you're right back in a place you had hoped you were moving away from.
The overwhelming sleepiness. The struggle to stay awake. The frustration of wanting to do something and knowing that wanting to do it isn't enough.
And perhaps one of the hardest parts is remembering.
Remembering how terrible it felt before you knew what was wrong.
Remembering how much effort it took just to get through a day.
Remembering the frustration of having things you wanted to accomplish, people you wanted to spend time with, and responsibilities you genuinely cared about, while fighting a body that seemed determined to shut down.
Except this time, you know what is happening.
You know there is something that helps.
You know what feeling better can be like.
And somehow, that makes being without it even harder.
Because now you're not just hoping to feel better someday. You've experienced better. You know the difference.
And you want it back.
I think that's the part I wish more people understood about living with a condition like narcolepsy.
It's not a matter of motivation.
It's not laziness.
It's not a lack of desire to participate.
I love my life. I love my family. I love teaching children. I love the opportunities God gives me to serve others, to create things, and to make meaningful memories.
I have ideas. I have plans. I have things I want to accomplish.
And sometimes my body simply cannot keep up with my heart and my mind.
That's a hard thing to accept.
Especially when you're someone who enjoys being involved, helping others, and making the most of the opportunities in front of you.
I also think there's a particular kind of discouragement that comes when you've made progress and suddenly find yourself struggling again.
It's easy to wonder how long this will last. How much of the progress you've made will be interrupted. How many things you'll have to put aside while you wait for something that should be available.
And yes, there's frustration in that.
I don't think acknowledging frustration makes me ungrateful.
I can be thankful for the answers I've received, thankful for medication that helps, and thankful for the progress I've experienced, while still being frustrated that access to that medication can suddenly become a problem.
Both things can be true.
And as a person of faith, I think that's important for me to acknowledge.
Trusting God doesn't mean that I never get discouraged. It doesn't mean I have to pretend that difficult things aren't difficult.
Sometimes faith looks like thanking Him for the progress you've made while asking Him to help you through a setback you never wanted.
Sometimes it's recognizing that you don't have control over everything, even when you wish you did.
And sometimes it's simply getting through today without allowing the difficulty of today to steal your hope for tomorrow.
I don't know exactly when things will feel normal again.
But I do know something I didn't know before.
Better is possible.
I've experienced it.
And even though these last several days have reminded me just how difficult living with uncontrolled narcolepsy can be, they have also reminded me how grateful I am for the days when treatment is working.
Maybe that's why I wanted to share this.
Because there may be someone else who is still trying to figure out why they're so exhausted. Someone who has been misunderstood. Someone who has finally found a treatment that helps but is now facing an interruption they didn't choose.
Or maybe someone who loves a person living with a condition they can't fully see or understand.
I hope you'll remember that just because someone looks okay doesn't mean they aren't struggling.
And just because someone is struggling doesn't mean they aren't trying.
Sometimes they're trying harder than you could ever imagine just to do the things that come naturally to everyone else.
As for me, I'm still grateful.
I'm grateful for answers. I'm grateful for progress. I'm grateful that I've experienced days that are so much better than the ones I remember.
But I'm also going to be honest about the hard days.
Because they're part of the story too.
And maybe sharing those parts will help someone else feel a little less alone.
I haven't forgotten what better feels like. And I'm holding on to the hope of getting back there.