5 years of EDS

On this day five years ago I got a diagnosis of Ehlers-Danlos Syndrome. After a decade spent navigating increasingly confusing symptoms that never seemed to fit together, I thought that getting an answer would be the start of my life changing for the better. Now that I knew what was wrong with me, we would be able to figure out a treatment plan, get all my symptoms under control, and I would be free to go out and start my life with no limitations just like any other 20-year-o

Lucy Amelia

Dec 10, 20256 min read

LATEST POST

EXPLORE MORE

5 years of EDS

Dec 10, 20256 min read

I met my younger self for coffee today

She was 10 minutes late, and I was 15. She told me she wasn’t expecting anyone to show up. She asked me to order her a flat white, and I...

Feb 18, 20252 min read

An Inspiration

“You inspire me every day!” What does it mean to be an inspiration? Am I an inspiration because I am still here? Am I an inspiration...

Jan 4, 20222 min read

Depression (a triolet)

The world is dark but still, it spins, and there's a creature on my back crushing my chest and the wounds on my leg hold a comfortable...

Aug 12, 20211 min read

Taken (short story)

It felt like he was staring straight into the depths of my soul. I’ve always hated prolonged eye contact but this was something else. It...

Jul 11, 20213 min read

Red String

I often find that my mind wanders, and when it walks off it always seems to find its way to you.

May 18, 20192 min read

What is your reason?

I think about my future a lot and always with an array of contrasting emotions towards it. On good days, I think about my children. I...

Mar 23, 20184 min read

To My Future Children

To my future children, You are extraordinary. I haven't even met your other parent yet but I know how extraordinary you are. You make me...

Dec 19, 20173 min read

Discover More

WELCOME ♡

Welcome to Memoirs and Maybe's, a personal blog where I share my creative writing, thoughts, and reflections. Here you will get a glimpse into the inner workings of my slightly chaotic, messy mind and get to know me a little better along the way. I hope that while here, you find yourself entertained, whether that be through joy, connection, or just a good story...

Read On >

CONNECT WITH ME

this month has been so beautiful but so unspeakably difficult in so many ways - so much growth and change and hurt and pain all at once, but i can honestly say that at the end of it all i feel happier, healthier and more like myself than i have in a very very long time🦋

a difficult year filled with so much love and so much joy❤️ thank you to every single person who was a part of my 2025 #newyear #2025

constantly dread this conversation #disabilty #chronicillness #longtermsickness #wfh #smallbusiness #chronicfatigue #fnd #neurologicaldisorder #wheelchairuser

so much healing💕 #mentalhealth #recovery

it's the very last day of autism acceptance month and it's taken me the entire month to try and work out what i would actually like to say - growing up i always felt like there was something wrong with me, no matter how much people insisted that i was just like everyone else, deep down inside i knew they were wrong.

autism was brought up a few times when i started struggling with my mental health in my teenage years but i was so terrified of that 'label', of the preconceived ideas of what 'autism' meant that i pushed it away and refused to listen.

i didn't start to actually accept it until much later, until i was an adult in my 20's and little did i know that learning about myself would help my family too. autism and adhd are genetic and though it has been difficult getting my family to listen as well, they are slowly discovering things about themselves and their own needs which has been beneficial for everyone. even going as far back as my grandparents.

we are a much happier, regulated household since learning these things about us. and for that i am grateful... i no longer feel like something is wrong with me. i know my brain works differently than some people and thats ok with me. i don't know who i'd be if my brain didn't work this way. while the negative traits are undoubtedly negative and difficult to live with, the positive ones are so wonderful. i love my passion, how deeply i care about people, my creativity, the little details i notice everywhere that other people seem to miss. i love my honesty, my unwavering acceptance, my sense of justice and empathy. i wouldn't change these things for the world.

i am deeply thankful that i have had the chance to truly understand myself, my brain and the way it works - and the same goes for my entire family.

(ive written a much more detailed post on my blog which i will share later today if you are interested but for now, thanks for being here ♥) #autismacceptancemonth #autismacceptance

getting to know and love so many of you is the greatest honour of my life - i have no words for how grateful i am to have found a place here❤️‍🩹 #chronicillness #community #disability #disabilitycommunity #friendship

this trend made me so emotional i feel like i want to write something following a similar pattern bc it's so beautiful and therapeutic🥲 #mentalhealth #recovery #neurodivergent #chronicillness

it hasn't been perfect or easy but i am grateful for all the happiness and healing that has happened this year. i'm grateful for all the experiences i have had that i couldn't have even imagined having 2 years ago. i'm grateful for all the wonderful people in my life who have surrounded me with love all year round. i'm grateful for all the ups and all the downs and the ability to find joy and beauty in the small things again. i'm grateful for the ability to finally understand myself, for answers and treatments and accommodations. and i am especially grateful for the mindset i am entering the new year with❤️ #newyear #2025 #healing #happiness #joy

for all the good days, the bad days and everything in between… i am blessed to still be here to see it all❤️ it really does get better… #suicidepreventionmonth

fnd awareness month - my story🎗️

#fnd #fndawareness #fndawarenessmonth #neurologicaldisorder #nonepilepticattackdisorder #nonepilepticseizures #motortics #tics #recovery #positivity #disabled #chronicillnessawareness

Happy Neurodiversity Celebration Week!🌻

At some point i will make a more detailed post than this about everything but at the moment I am just extremely grateful for the chance to get to know myself.

I am thankful for all the people who have helped and supported me these past couple of years. I am grateful to those who noticed and actually said something. Those who have listened, believed me, and have given me the confidence to heal, understand and love myself.

It's a long complicated and difficult journey, but I'm getting there. I'm learning how my brain works for the first time in my life and so are all the people around me. It's refreshing and terrifying and overwhelming all at once, but I can slowly but surely feel my inner child letting out the breath they've been holding their entire life and that feels incredible.

#neurodivergent #latediagnosed #audhd #disability #sensoryprocessingdisorder #neurodiversity

international wheelchair day 2024👩🏼‍🦽

(apologies for being a day late)

#internationalwheelchairday #chronicillnessawareness #wheelchairuser #disabled #disabilitypride

a little snippet from my end of year ramble on tiktok but i think it says everything i wanted to say. i'm proud of you for being here, no matter what you did or didn't do, you made it and for that you are incredible. happy new year, i hope it's kind to you <33

there are so many things i want to say about this, about the journey to achieve this and the monumental mountains i've had to climb to get here but i'm going to save that for another post… for now i'm just going to say i did it.

finally and despite everything, i did what no one thought i would be able to do. i don't have the words to express how much this means to me, how healing this is but i wanted to share this moment with you lot because without you and your support i couldn't have made it here - so from the bottom of my heart, thank you for everything❤️‍🩹

i wanted to write an update but wasn't really sure what to say and didn't want to seem like i'm bragging since i know how many people are struggling but in short i'm doing really well atm. since getting help from new gastro, pots & pain specialists and being put on the right combination of meds things have improved for me significantly. i am able to eat again without v*miting, nausea or pain. my chronic pain has decreased a lot, my fatigue has reduced and my mobility has improved. i am able to walk again and rarely need to use my wheelchair or any kind of mobility aid. honestly it's amazing and i can't explain it but i do know that a shift in my mentality has helped me a lot.

a few months ago @abby.emmaa said to me that i needed to change my way of thinking from thinking i would never get better. she told me that that mindset would hold me back and that once i changed it, life would start to look very different. at the time i honestly wanted to tell her to piss off. i wasn't in a good place and didn't have the capacity to hear it but it never left my mind. i knew, deep down that she was right. that my hopelessness was contributing to the lack of progress i was making. when the new year hit i made a promise to myself that i was done just sitting around waiting for something to change. i was going to help myself in every way i could, even if i was scared, even if i didn't really want to. i was done waiting for other people to help me and i was done seeing my illnesses as a limitation. these past two months i have stuck to my promise and i have been so much happier. i have done more, seen more people and achieved more than i did the entirety of last year and it feels amazing.

i know everything isn't perfect. i know i'm still disabled, i know i will have flare ups and bad days and i know that won't change but i also know that i am so much more than my disabilities and capable of so much more than i once thought and you are too. it doesn't matter how big or small your achievements are, they are worth celebrating. i promise you, it can get better than wherever you are at - it won't be like this forever <3

#chronicillness #recovery #disabilitypride

come a long way🫶 #mentalhealth #recovery

.pro-gallery-wix-wrapper {display: block !important;} .pro-gallery-wix-wrapper .gallery-item-container {opacity: 1 !important; display: block !important;}