I don’t want to simply survive my life.
I want to feel it.
I want to live with intensity. I want to laugh until my stomach hurts, dance in the kitchen, make things with my hands, listen to music loudly, love deeply, create beautiful things, sit under the stars, travel, kiss my person, watch my boys grow, and notice the tiny moments that would be so easy to overlook.
I want to feel every part of my life.
And that desire means even more to me because I live with endometriosis, pudendal neuralgia and chronic pelvic pain.
Pain has taken things from me.
It has taken days. Plans. Sleep. Energy. Spontaneity. Sometimes even the feeling that my own body belongs to me.
There are days when sitting hurts. Walking can hurt. My pelvis can really hurt. My pelvis can burn and ache. Nerves can fire without warning. There are days when my body demands that I slow down whether I want to or not.
But here’s something I’ve learned:
I am not only my pain.
My life is so much bigger than the parts of my body that hurt.
I don’t want to spend every good day waiting for the next flare.
I don’t want to postpone happiness until I’m completely well.
Because what if “completely well” isn’t the destination?
What if the goal is learning how to build a life that still feels enormous, even inside a body that sometimes has very real limitations?
So I’m choosing intensity.
Not reckless intensity.
Presence.
I’m choosing to notice the coffee I’m drinking instead of thinking about everything I have to do.
I’m choosing music.
I’m choosing creativity.
I’m choosing my children.
I’m choosing love.
I’m choosing laughter.
I’m choosing the ocean, sunsets, conversations, stupid jokes, spontaneous moments and the little things that make me feel like me.
I’m choosing to make art even if I have to lye down for periods afterwards.
I’m choosing to celebrate the days my body gives me more freedom.
I’m choosing to rest without believing that resting means I’ve failed.
I’m choosing to stop measuring the value of my day by how productive I was.
And I’m choosing to understand that sometimes living intensely means resting intensely too.
Because chronic illness has taught me something healthy people sometimes don’t have to learn:
You don’t get an unlimited number of ordinary days.
So I want to actually be there for mine.
How I’m trying to get more out of life
1. Stop waiting for the perfect day.
There may never be a day when everything is pain-free, organised and perfectly timed.
Do something beautiful anyway.
2. Make small moments count.
A cup of coffee. Music in the car. A sunset. A cuddle. A funny conversation with my kids.
These aren’t insignificant moments.
They’re my life.
3. Create around my body rather than constantly fighting it.
If I can’t do something for three hours, maybe I can do it for twenty minutes.
If I need to sit, I’ll sit.
If I need to rest, I’ll rest.
Adaptation isn’t giving up.
It’s finding another way.
4. Protect the things that make me feel alive.
Creativity. Family. Love. Friendships. Music. Nature. Humour. Whatever makes you feel like yourself deserves space in your life.
5. Don’t make pain the narrator of everything.
Pain can be present without being the main character.
I can acknowledge that I’m hurting and still notice that the sky is beautiful.
I can have a flare and still love my life.
Both things can co exist at once.
6. Let myself have fun without earning it first.
I don’t have to be productive enough, pain-free enough or accomplished enough to deserve joy.
Joy doesn’t need permission.
7. Learn my body’s limits without making them my identity.
Knowing when to stop isn’t weakness.
It is self-awareness.
My limitations describe what my body can manage on a particular day.
They don’t describe my worth.
8. Capture the good days.
Take the photos.
Make the memories.
Write things down.
Laugh loudly.
Do the thing you’ve been looking forward to.
Not because tomorrow will necessarily be bad, but because today is worth remembering.
9. Stop feeling guilty for enjoying myself while I’m sick.
This one matters.
Sometimes people with chronic illness feel like they have to prove they’re sick all the time.
But having a good day doesn’t mean the illness disappeared.
Laughing doesn’t mean I’m cured.
Going out doesn’t mean I’m suddenly fine.
I am allowed to experience joy while living with pain.
10. Remember that intensity isn’t measured by how much I accomplish.
Sometimes intensity is living.
Sometimes it’s dancing.
Sometimes it’s making something beautiful.
Sometimes it’s lying in bed listening to music and feeling completely present.
Sometimes it’s surviving a brutal day and waking up the next morning ready to try again.
There is no single correct way to live fully.
And perhaps that’s what I want most now:
Not a life untouched by pain.
A life so full of meaning that pain isn’t allowed to define all of it.
I have lived through years of medical appointments, procedures, surgeries, investigations, uncertainty, judgement, toxic defining of my diagnosis’s by specialists and pain.
I know what it feels like to have my body become something I constantly have to negotiate with.
But I also know this:
There is still so much life inside me.
So much love.
So much creativity.
So much curiosity.
So much laughter.
So much I haven’t experienced yet.
And I’m not waiting for my body to become perfect before I start living.
I’m going to live with what I have.
I’m going to make adjustments when I need to.
I’m going to rest when I need to.
I’m going to fight for appropriate treatment when I need to.
And when life gives me a window of freedom?
I’m going through it.
Because I don’t want to merely exist between flare-ups.
I want to remember that I am a whole person.
A mother.
A partner.
A creator.
A woman.
A human being with dreams, values, ridiculous laughter waiting to explode out of me, big feelings, deep insight, messy days and beautiful ones.
I want to feel the music.
I want to feel the love.
I want to feel the excitement.
I want to feel the ordinary moments.
I want to feel alive.
And if chronic pain has taught me anything, it’s this:
Don’t wait for life to become perfect before you allow yourself to live it.
Live the life that’s available to you.
Make it meaningful.
Make it colourful.
Make it yours.
And when your body says slow down…
Slow down.
But don’t stop living.
You have to be more than just wanting to be alive and survive if you understand me.
You have to want more for yourself and for your life.
“You will be the saviour of you, it’s funny how it turns out that way”
Quote – The band “Incubus” Lyrics
Cassie x
