I am not okay right now.
One thing I promised myself when I started Flare & Fly was that I wouldn’t only show up when life was going well.
It’s easy to write about packing lists, travel tips, and making memories when your body is cooperating. It’s much harder to admit when it isn’t.
Right now, I’m in the middle of the worst flare I’ve ever experienced.
The truth is, I don’t even know what is flaring anymore.
Since around February, I’ve been getting progressively worse. For the last couple of months, I’ve been throwing up every single day. Sometimes multiple times a day. I can barely keep food down. Water is difficult. The medications I depend on to control my autoimmune diseases don’t stay down long enough to do their job.
Without those medications, everything else begins to unravel.
Every joint hurts.
My body feels heavy.
The fatigue is beyond anything I know how to explain. It’s the kind of exhaustion where getting out of bed feels like climbing a mountain. Brain fog makes simple conversations difficult. My eyes and mouth are painfully dry. The headaches never seem to leave.
I spend so much of my life sleeping because being awake feels harder.
And if I’m being completely honest…
I’m scared.
Not just because this is the worst flare I’ve ever had, but because I don’t know why it’s happening.
I’m scared that it won’t end.
I’m scared that something bigger is wrong.
Living with chronic illness means you’re constantly trying to figure out which symptoms belong to which disease. Normally I can tell. This time, I can’t.
That uncertainty is exhausting all on its own.
But the physical symptoms aren’t even the hardest part.
It’s everything I’m missing while life keeps moving without me.
This summer has slipped through my fingers.
I missed Fourth of July celebrations.
I missed my mom’s birthday.
I missed family barbecues.
I missed river trips.
I watched another summer disappear from my bed.
My youngest daughter is leaving for college this fall, and every day that I spend sick feels like time I can’t get back. Instead of making memories together, I’m trying to make it through another day without getting sick again.
That hurts more than I can put into words.
Then there’s the guilt.
My husband has become my caregiver.
He’s helping take care of me while also walking through one of the hardest seasons of his own life as his father battles cancer. On top of that, he manages his own Type 1 diabetes every single day.
I look at everything he’s carrying, and I can’t help but wonder if I’m just adding another impossible weight to his shoulders.
I know he would never say that.
But chronic illness has a way of convincing you that needing help makes you a burden.
At work, I try to keep going because I love what I do.
I’m still seeing patients.
I’m still showing up.
But I can’t hide it anymore.
My patients can tell something is wrong. I spend more time than I’d like to admit running to the bathroom to get sick. The energy I used to have for conversations and laughter just isn’t there.
The hardest part?
Most people don’t ask.
Maybe they don’t know what to say.
Maybe they assume I’m okay.
Maybe they’re afraid of the answer.
So I smile when I can.
I do my job.
Then I go home and crawl back into bed.
One of the biggest reasons I created Flare & Fly was because I wanted people with chronic illness to know they weren’t alone.
Today, I need to remind myself of that too.
Sometimes living with chronic illness isn’t inspirational.
Sometimes there isn’t a silver lining.
Sometimes there isn’t a lesson waiting at the end of the story.
Sometimes life just hurts.
Sometimes your house is messy because surviving takes every ounce of energy you have.
Sometimes you’re grieving memories you never got to make.
Sometimes depression creeps in because it feels like the world keeps spinning while you’re standing still.
And none of that makes you weak.
It makes you human.
I wish I could wrap this post up with a neat little ending and tell you that tomorrow will be better.
The truth is, I don’t know.
I’m still in the middle of it.
I’m still wondering what’s wrong.
I’m still worried about whether I’ll be healthy enough for the cruise my family has been looking forward to.
I’m still hoping tomorrow is the day I wake up feeling just a little bit better.
But if you’re reading this from your bed…
If you’re missing birthdays.
Missing vacations.
Missing pieces of your own life.
If you’re wondering whether anyone else understands…
I do.
This is a safe place to tell the truth.
You don’t have to pretend you’re okay here.
You don’t have to find the positive in every bad day.
You don’t have to earn your rest.
If all you did today was survive, I’m glad you’re still here.
And if I’m being honest…
Today, that’s what I’m trying to do too.
If you’re comfortable sharing, tell me how you’re really doing today. No toxic positivity required.