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Stacey

@living.life.with.m.e

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Performer and Teacher now sharing my journey with Myalgic Encephalomyelitis, EDS, POTS and adapting to life with chronic illness

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I’m Stacey!
I started this page to share my life and my experience living with multiple chronic illnesses; ME/CFS, EDS, POTS, and friends!

But I am so much more than my conditions.
I may be chronically ill, but I’m also a:
🎵 singer 🎭 actor🩰 dancer
📚 teacher 👩‍👧‍👧 sister and daughter
🦮 dog mum 👯 friend

Before getting sick I had an incredible life! I studied music education and music theatre on the side, attending the Western Australian Academy of Performing Arts. I then spent a year working at Walt Disney World in entertainment as a Character Attendant, making magic every day.

I came back home to Australia and started my career as a performing arts teacher, teaching drama, music, choir, theatre company and musicals. It was so wonderful to help teenagers build their skills and love of the arts!

Throughout all of that, I performed, travelled, and made the most incredible friends!

Outside of the theatre, my favourite place to be was the beach and I would spend many mornings walking along it.
I also love the colour pink and how happy it makes me, so I wear it as often as I can!

My dream life was a pink car, owning a home near the beach with a golden retriever, while working in a job I loved and performing and traveling as much as I could.

I was very fortunate to have built that life for myself, and while most of that is gone now, I treasure those memories (and the fact I still have Koda!)
I truly am so thankful for the life I lived.
A life that I loved wholeheartedly.

I was genuinely in love with life and that was truly wonderful, but made the loss of my life so incredibly hard.

Life is so different now from anything I could have ever imagine.
But I’m here, and this is me 💖 by @living.life.with.m.e

🩵 Today is Myalgic Encephalomyelitis (ME/CFS) Awareness Day 🩵

When I first heard this song, I couldn’t believe just how much I resonated with it, and how much I needed to hear it in that moment. It truly moved me.

To help raise awareness, I wanted to share this song, some of my story and important information on Myalgic Encephalomyelitis (ME/CFS), a poorly understood condition that has drastically changed my life. There is so much I could say about it, but I feel like this expresses it as best I know how, and I really appreciate you taking a moment to watch.

ME/CFS is not necessarily a terminal condition, however, people are dying from it due to lack of proper support and effective medical education, with incorrect treatments still being pushed despite guidelines being directly against them.

This is why awareness matters.

This is the first time I’ve sung since my condition deteriorated in January. As I am unable to effectively warm up and sing in the same day, and I don’t have the stamina to maintain my higher register, I transposed this song to a lower key to make it more accessible without practice. I chose not to focus on making it perfect, but rather sing to authentically express everything I feel.

Music has always been the way I experience the world so I am glad to share this with you. This post is public so please feel welcome to share to spread awareness.

Originally performed by Billie Eilish
Words and Music by
Billie O’Connell and Finneas O’Connell

Video also on YouTube and linked in bio

#goblueformecfs #goblueformecfs2024 #millionsmissing #millionsmissingvoice #millionsmissingaustralia #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #myalgicencephalomyelitiswarrior #mecfs #chronicfatiguesyndrome #mecfsawareness #mecfswarrior #chronicfatigue #severeme #longcovid #worldmeday #allyforme #whatwasimadefor #whatwasimadeforcover #billieeilish #singer #disabledsinger by @living.life.with.m.e

Awareness days can bring around a range of feelings and questions. Illnesses aren’t nice things, so why do we talk about them?

These are some of the reasons why I talk about my conditions. It’s not that I think they’re nice, or that I’m dwelling on them all the time, but they do impact me all the time.
Awareness is important to me because if I’d been given more support early on I may not be as unwell as I am today.
Even though I am now diagnosed, I still have to explain my condition in medical settings. This is pretty daunting when sometimes I have difficulty speaking!

It also impacts my friends and family, so I’d society has a better understanding, they would be able to have the social support we provide others with more well known conditions.

Creating awareness content isn’t for everyone though. And that’s ok!

In my heart I am a performer and educator, so raising awareness is a great way for me to connect with both. I started this page as a way for me to creatively express my experiences because that was right for me. I never imagined reaching so many people but I’m so glad to have found a lovely community!

This doesn’t mean that everyone should do it! We all know what is within our abilities and no one should feel pressured or guilty either way.

Trust that however you acknowledge or don’t acknowledge awareness day is what was right for you in that moment 🩵 by @living.life.with.m.e

Earlier in October marked 1000 days since l became mostly bedbound with Severe Myalgic Encephalomyelitis.
I wasn’t keeping track but after I enjoyed a couple of minutes outside last Friday for the first time in almost 4 months, I wondered how long it had been and realised the date had just passed. 1000 days seems like such a big number, and it has been a long time, but I’m also very aware that so many have been more impacted, and for longer.

Next month is 7 years since I first got sick and life now is quite a contrast to this time in 2019.
I wanted to do something different and share some moments from my camera reel that I took at the time to share what life did look like for me.
Most of these weren’t things I ever planned to share - the singing was just for me to look over and coach myself on, pick apart to improve. Now I look over them and thinking less about what needs work and more about how lucky I was to sing so much.

At the time I’d just bought my own home, and now I’ve been unable to live independently for over 1000 days.

It’s bitter sweet to look at the past, but I’m so grateful for these moments now - including that bad audition!
So this is just a little glimpse at my life from before ME/CFS. by @living.life.with.m.e

Today is Postural Orthostatic Tachycardia Syndrome (POTS) Awareness Day and although I usually focus on sharing about Myalgic Encephalomyelitis, POTS is my other disability.
They are both why I need a wheelchair because even if sometimes ME/CFS lets me stand, POTS doesn’t allow me to stay standing. Then there’s also the PEM because of ME/CFS if I push my body.

When first diagnosed with ME/CFS, I was able to manage POTS but unfortunately it got worse after a covid infection. I was diagnosed and had just got to the point where it felt more manageable with medical support when I caught it again.
I’ve known others develop POTS this way too.
I’m fortunate to have a diagnosis, access to medication and support to help manage POTS as much as possible and I’m incredibly thankful.
It’s been great to see his much awareness and understanding of POTS has grown since I first got sick but there is still so much misinformation which is why awareness days matter. by @living.life.with.m.e

Grief around body changes with chronic illness is hard. Sometimes the changes are visible and noticeable to others, sometimes they’re subtle, and sometimes they’re invisible.
They are all valid and all can impact in different ways.
When I first got sick I was angry at my body for stoping me from doing everything I loved, but I didn’t want to feel that way. I knew my body was working hard to get by.

These are some of the things I noticed within myself along the way and the steps I took to navigate them.
This isn’t medical advice and not everyone has the same experiences, these are just a couple of mine. by @living.life.with.m.e

A couple of months ago I had the opportunity to chat with Anne, CEO of @emergeaustraliainc on the podcast for Severe ME/CFS Awareness. I briefly mentioned mental health considerations but it’s something I wanted to share more on and with October being Mental Health Awareness Month it seemed like a good time.

Mental Health is such an important topic and how it’s discussed is important 💜

I am not a healthcare provider and this is not medical advice.
I am sharing from experience with Severe ME/CFS and misunderstandings I’ve noticed along the way.

@bateman_horne_center has a second on mental health in their clinical care guide and @emergeaustraliainc has resources for Australians seeking mental health support. by @living.life.with.m.e

October is POTS Awareness Month and we are heading into summer so these are some of the ways I manage POTS symptoms.

While I focus on Myalgic Encephalomyelitis, I am also severely impacted by POTS and even with medication and a wheelchair, sometimes it’s still not enough.

See @australianpotsfoundation for further information and resources by @living.life.with.m.e

This is a post I meant to share for Severe ME/CFS awareness in August and I started it at the beginning of the month but still couldn’t get it finished in time and that gives you an idea of what it’s like.

When I was healthy if I needed a quiet weekend I found it genuinely relaxing to go for a walk and then sit in front of the tv doing a 1000 piece Disney jigsaw puzzle which I could often start and finish in a weekend.

Very different to now!

While overall limited energy has an impact, Post-Exertional Makaise has a significant role and is often misunderstood. For further information please see organisations such as @emergeaustraliainc and @bateman_horne_center by @living.life.with.m.e

I’m so thankful to the young women who posted themselves using their mobility and medical aids who made me feel less alone at a time where I felt lost.
In my community I’d seen and interacted with many wheelchair users, including ambulatory wheelchair users.
However, all were either temporary (eg injury), elderly, or was born with their disability.

I looked into activities to see if there were opportunities for me to find community and meet others in a similar situation. I found many wonderful classes offering great experiences and it was wonderful to see!
However, I still didn’t see myself reflected in what was being offered.
Building social skills and confidence are fantastic and one of my favourite things about teaching performing arts, but it wasn’t what I was looking for.
A seated dance class sounds perfect, but it was aimed for those who have retired and not quite the social setting I was after.
I was looking for a space to learn how to adapt my skills to my disability, and to meet other young adults who had become disabled and were relearning to navigate life.

Then online I saw @thechronic_explorer exploring amazing scenery in her wheelchair.
I saw @ellie_ology confident in a beautiful dress with her pink wheelchair and was so excited to realise they could be pretty too.
I was worried about how I would manage the cruise my family had booked but say @lifeofpippa share about her experience and knew it could be done.
I still remember the awe I had seeing @katestanforth dance, something I had thought I’d never do again and was struggling to accept. I scrolled through so many of her videos that week seeing all that was possible!

I remember excitedly sharing these with my Mum because they gave me hope in a confusing time.
I genuinely can’t imagine how drastically different my life would be if I didn’t see the experiences of other chronically ill and disabled people online. Not just with wheelchairs and my own disability, but the compassion and greater understanding of others too.

(final thought in comments) by @living.life.with.m.e

Recently there’s been media pieces targeting young women with chronic illnesses using mobility aids, with all the same assumptions we’ve heard before.
With the cost an inconvenience using a wheelchair brings, I would absolutely rather walk! However, there’s only so many times you can end up on the floor before reconsidering.
Initially my wheelchair was just for big trips out of the house but one morning after Covid I sat on the kitchen floor exhausted because I walked down the hall (like I had to every morning), in tears because I didn’t know how I was going to get my cereal and also carry it.
That’s when I knew it was time to stop resisting.
My POTS assessment that consistently resulted with me being on the floor and never actually lasting long enough to complete it, cemented that it was a good decision.
Getting sick again and my health declining further meant use a wheelchair or don’t go to the bathroom, so it really isn’t a choice at that point.

Mobility aids aren’t just a quick solution though and using them incorrectly can be harmful as I experienced before having ones that fit. Access to mobility aids that fit your needs is a privilege and I am very thankful that I do.

It’s not embarrassing to use the equipment that allows you to live 🩷 by @living.life.with.m.e

Birthdays can be hard with chronic illness and this year was especially difficult, which makes things like this even more special 💖 by @living.life.with.m.e