Reflection - Living with Vestibular Migraine & PPPD
Let’s be fucking honest.
This isn’t your typical migraine.
This is life with vestibular migraine and PPPD, and I’ve been living with this reality for five years.
Five years of learning that my body doesn’t always play by the rules.
Five years of cancelling plans, changing plans, resting, pushing when I can, pulling back when I have to, and constantly trying to work out where the line is between doing enough and completely wiping myself out.
And after five years, people might assume it gets easier.
In some ways, you learn how to live with it.
But easier?
Not necessarily.
You just learn to live differently.
Day five of a flare
Right now, I’m on day five of a flare.
By 7pm last night, I was in bed.
Dark room.
Stillness.
No noise.
No stimulation.
Nothing.
Because that was all my body could handle.
This is the part people don't see.
They might see me out walking.
Having coffee.
Laughing.
Going to the beach.
Taking photos.
Living my life.
What they don't see is what it can take to get there or what happens afterwards.
They don't see me lying in the dark because movement, screens, noise or visual stimulation have become too much.
They don't see the frustration of knowing I want to do something but my body is saying, not today.
And then there's PPPD
PPPD is another layer to this.
In simple terms, it's like my balance system can stay stuck on high alert after all the dizziness and vestibular problems.
It can leave me feeling like I'm rocking, swaying, off-balance or like the world around me isn't quite steady.
Movement can feel different.
Busy environments can feel overwhelming.
Visual stimulation can be exhausting.
And when I'm already in a vestibular migraine flare, those symptoms can become even harder to manage.
It's not simply:
“I have a headache.”
It's my whole sensory and balance system feeling like it's struggling to find its footing.
I'm already fucking frustrated
And this is where I need people to understand something.
I'm already frustrated.
I'm already exhausted.
I'm already trying to manage something I didn't ask for.
I don't need people adding to that frustration because they don't understand.
I don't need to constantly explain why I'm quiet.
I don't need to justify why I've cancelled.
I don't need someone taking my lack of communication personally.
And I definitely don't need to be pushed when I've already reached my limit.
My communication boundary is simple.
If I tell you I'm struggling, believe me.
If I pull back, don't automatically assume I've abandoned you.
If I say I need quiet, give me quiet.
If I don't respond, understand that sometimes I genuinely don't have the capacity.
I shouldn't have to keep proving that I'm struggling before my boundaries are respected.
But here's the part I'm finding harder to say
This time, I actually need more reassurance.
I need a bit more support.
And that's uncomfortable for me to admit.
Because I've spent years learning how to manage myself.
I've become very independent about my health.
I've learned how to recognise my triggers, read my body, regulate my nervous system and work out when I need to stop.
But sometimes I don't want to be the strong one.
Sometimes I don't want to manage everything by myself.
Sometimes I just need someone to check in.
Not constantly.
Not with solutions.
Not with advice I didn't ask for.
Just:
“I'm here.”
“I know you're having a rough time.”
“You don't need to explain.”
That kind of support can mean more than people realise.
I'm not asking you to fix me
I don't need fixing.
I don't need someone telling me to push through.
I don't need “you'll be fine.”
I need people to understand that I'm doing the best I can with the body I have today.
There will be days when I can get up and go for a walk.
There will be days when I can sit at the beach and drink coffee.
And there will be days when getting from the bed to the bathroom feels like enough.
None of those days make me less determined.
None of them mean I've stopped trying.
They're just different days of the same life.
I'm still here
This illness has changed how I live, but it hasn't taken away the person I am.
I still want connection.
I still want laughter.
I still want adventures.
I still want to be part of life.
I just have to approach life differently now.
And maybe that's one of the hardest things about invisible illness.
You can look completely fine while fighting something nobody else can see.
So if I tell you I'm struggling, please listen.
If I go quiet, please don't make it about you.
If I ask for space, respect it.
And if I seem like I need a little more reassurance than usual, I probably do.
I'm not asking for pity.
I'm asking for understanding.
Because sometimes I don't need someone to make the symptoms disappear.
I just need someone willing to sit beside me while I ride the fucking wave.