I’m not sure why I’m writing this story. Perhaps, it’s so that my pain can finally be seen.
Perhaps, it’s to raise awareness so that others don’t have to suffer as I have.
Perhaps, it’s simply to grieve.
And whilst you may think this is a sad story, I would like to think it is one of strength.
Strength to carry on when life doesn’t give you lemons. Just shit loads of tiny pips.
I wake up and feel like my entire body has been hit by a bus.
My muscles are stiff and sore, and quite frankly I can’t be faked to move.
My head is fuzzy, the never-ending hangover continues and my joints click, cluck and crack beneath my feet. My eyesight is a little less blurry today, hallah bloody fucking looyah. The pressure in my head and ears is pretty intense. It sounds the sea is swirling in my right ear, swooooooooooosh swoooooosh. My jaw is in fuking agony.
I gurn in the mirror, not sure whether to laugh or cry. I stand up and my heart rate shoots to the sky. I feel breathless.
I feel like I’m going to have a heart attack. Only I now know this feeling too well. I breathe into it. Silly heart.
You are safe.
I do my pranayama or chi gong to loosen up and set my intention for the day.
I climb into my car, rolling my shoulders again and again.
Trying to sit up straight hurts. I whack my stereo on, play some high vibe music and repeat positive mantras as I drive to work. ‘Today I command health and wellness.’ ‘Today I only expect and accept the best.’ ‘Today, I choose to be an empowered being.’
I like working.
It keeps me distracted.
I can focus on other people, rather than myself. In fact, I find joy here. Joy in melting and merging with other people’s stories.
Hearing what they have to say.
My heart rate is still racing, but it’s okay. My right ear randomly screams a really high-pitched tone in my ear for 30 seconds. I feel a little off-balance. But I’m okay.
My finger joints have been swollen for three months. But today, my body surprises me.
It’s in my toes instead.
I laugh at the hilarious addition of another old Granny symptom.
I eat something. I love food, but I don’t really love eating.
Sometimes it just sits in my stomach for hours, and it just doesn’t go down. It’s like a rock. Just sitting there.
Like it wants to be my friend or something. Hah, well you can f**k right off friend. Most of the time, I’m just insanely bloated. You know when you see those people in hospital beds pumped up with gas.
Most of the time. I feel like I’ve nearly pissed myself four times today. But it’s okay. I didn’t.
And quite frazzled. I used to sleep at this time every day. F**k that. I want to live instead.
I practice some chi gong, or lie on my acupressure mat and listen to some feel-good tunes. I practice feeling alive.
I connect to myself and let source energy fill me up.
This is my favorite time of day.
Sometimes, I’m just f**ked.
I lie on the sofa with a bag of peas on my head.
Other days, I am absolutely BURSTING with energy. I cycle, run or do some strength training.
It still hurts.
But it’s fun. I smile. I laugh. I love life.
Sometimes, I have a wobble.
I want to stay up and do fun things.
The other half of me, says no it’s sleep time.
I sit in my room and reflect on the day.
I write down what I feel gratitude for today. I write down how I have felt today.
I give my body a 5/10 rating. It’s done well. Well done body.
I sit and pray. I pray for strength to guide me, to heal me, and to hold me.
I pray to give over my sadness, my frustration, and my pain. I pray that tomorrow will be a better day.
Ehlers danlos syndrome symptoms are most definitely not for the faint-hearted
No chronic illness is; whilst we may look like normal, happy-go-lucky functioning human beings on the outside.
We are usually crippled in pain. But this pain has been my biggest teacher.
Through relentless challenge, I have learned the best lesson of all. I am one resilient MOTHER F**KER.
Nothing will stop me.
Before the chronic illness, I used to be scared.
Scared of what to do, what not to do, scared of pain, dying, and death. Now, I’m invincible. You can throw me anywhere, make me do anything. I won’t flinch.
I may be made of flesh and blood and dodgy collagen. But I am free. Free from fear. There’s nothing to be afraid of anymore. I’ve been through it all. Every day. Daily. Again and again and again.
And I’m still here. I did it. I’ve done it. I’m doing it. I can choose to be anything, do anything and go anywhere. I may have to rest. I may have to cry. I may have to lie down with a bag of peas on my head.
But I am alive. I am god damn alive and I feel every second of every day.
If life gives you nothing but pips.
Yes, pips. Shitty, little, tiny pips. Not even lemons. You were not made to make lemonade.
You were meant to reap gold from the earth. You were made to sow your tiny seeds, and watch them grow. Serve and sow each day, in the best way you can. Even if you only have one drop of water left in you.
Sow. Sow, sow.
And let yourself grow. Into the biggest, most badass, resilient MOTHER F**KER you know. You’ll be glad you did.
When the rest of the world has a shortage of lemons. You’ll still have your seeds.
And you’ll know. It’s not the end of the world. You’ve got this. You always have. You are mother f**king unstoppable.
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