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I Wish Support For You

Someone asked me today, ‘Do you have support?’ 

I’m lucky that I could say yes. An absolute, unequivocal YES!

My family and friends who support me are angels. 

It’s not easy to support a chronically ill person. I get that. It’s hard to see someone you love hurt, weak etc. And it can be physically and emotionally hard to help or even just watch someone you love be chronically ill.

My support family make my life bareable. That sometimes we can laugh about some pretty serious issues, and at other times come together and find a solution to a problem we never thought we’d solve, as if pulling a solution out of a magicians hat, is remarkable to me.

My support team are my soft place to land. They are my reminders that there are good times ahead. 

They are my ‘I can’ when every part of me is screaming ‘I can’t’.
Thank you, support team. I love you now. I will love you forever. And even though sometimes it’s hard to see, I am appreciative of every second that you make me feel worthwhile of care and love.

My wish for everyone with a chronic illness is that you either have your support family already, or you find one, because you deserve one — and you can add me to it if you wish!

Here’s to our support saviours. Our earth angels!

Thank you, thank you, thank you!

(Tag someone who is a support angel for you.)

Photo: me with some of my support angels.

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Moving Forward

What a weird year its been so far. 

I’m now recognised by our local paramedics, I’ve had a few trips to ED, I’ve almost died, and learnt that there is far more going on in my body that needs tending to than I previously thought.

I remember several months ago I was planning on a fairly simple trial of ballet for physical therapy. I was planning on trying it for several months and seeing how I go.

And I did try it, and I did see the improvements in my health that I wanted to.

Then four days into the new year I had a new health event that I’d never had before, and nearly died. And I found out that this could repeat any time. There are things to do to try and prevent another event, but none of them are definite answers.

I have since had a few more of the same types of events. One resulted in another emergency ride to the hospital. The others were able to be managed at home.

But every time I have one of these events, it results in pretty severe dehydration and severe weakness. Basically it creates a massive POTS flare up and I am back to almost passing out even when I just lift my head off the pillow.

So I have been feeling incredibly stuck. Like REALLY REALLY stuck. 

My mental saving grace has been two things: 1) Knowing that I wasn’t always this sick, so there’s hope that I can not have to continue to be this sick, and 2) Knowing that summer makes my health so much worse and we have been having a terribly hot summer. So I feel hope that once the heat backs off I will at least be able to not pass out as much, (or almost pass out as much), which will give me the chance to do more exercise, which is a cornerstone to my health improvement.

This experience over the past few months has been so hard. I have had to work really hard on my mental game. And for a while I felt pretty lost and not sure where it all left me in terms of what I’m working towards.

Last week, my exercise physiologist was brutally honest about where my goals should be right now. 

We talked about hero stories that people in my situation can create in their heads. Like, basically, setting unrealistic goals for themselves, which set them up for failure.

He was worried that I was going to do the same, like imagine myself dancing across a studio within the next few months, and that that was going to be my expectation from him and from my exercise therapy. He wants to help me achieve whatever I’d like to achieve, but in a realistic way.

I could see he really wanted me to not think unrealistically and end up feeling devastated, so I stopped him during the appointment and said…

Tom, my biggest goal right now is not having to be scared that when my husband goes to work my children might have to call an ambulance for me on their own, because that’s where we’re at right now, and it’s terrifying for them. 

Don’t worry, Tom, no hero goals here.

So, this is where I’m at. 

It feels like rock bottom. 

I know of course, things could be worse, I’m not ignorant. But this is close enough to rock bottom for me.

So what am I doing?

Not really even sure why I wanted to right this blog post. I think it was a combination of needing to set the record straight on where I’m at, as well as where I’m heading — what my path is moving forward, as well as a cathartic purge of shit that’s been circling my mind for too long now.

So my current capabilities are low. I’m mostly lounge bound. With several therapies I do every day to try and assist the different parts of my body and mind’s functionality. These therapies are, for example: exercise therapy, small activities (like walking a few metres and back), meditation and mindfulness. Everything is set to my capabilities, so we’re talking very small amounts of exercise etc. Because, as I said, I’m mostly lounge bound.

My goal is firstly to stabilise my hydration and work on my exercise therapy. 

First goals are:

1) Less emergency situations.

2) More stable hydration.

3) More upright stamina.

4) Progression in exercise tolerance (which include floor ballet.)

I will be starting where I’m at and working with my medical team to start getting some improvements.

We are relying on the end of summer being part of my medicine. And actually, we have had our first few cooler evenings recently, and I my nausea has started to ease a little bit. Yay!

During the summer, my cognitive function became so bad, I could barely put words together, let alone write a blog post. So just the ability to write this post is testament to me regaining some of my functionality with the easing of summer. Yay again!

I am not sure whether anyone is even slightly interested in hearing about this odd journey I’m on? I suspect it is difficult to relate to for many, and straight up boring for most.

I remember when I first started ballet, I started a blog at the same time, to write all the stuff in my noggin out, to help me process what I was doing.

And I think this is what I want to use this blog for now. As my processing tool, my sounding board — as well as knowing that perhaps my story might help someone else out there, struggling, not feel so alone.

I expect that much of this post made no sense at all, but I’m just stoked that I managed to get through the writing of it!

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Positive Changes

Hello my dearest friends, followers and fans,

I haven’t written anything in such a long time. It’s been an interesting year for me to say the least.

My ballet journey has shifted to become a combination of ballet and physio for my physical rehabilitation after my health disorders POTS and Ehlers Danlos Syndrome flared severely 18 months ago.

I became bedbound and have been crawling my way back to functionality ever since — and ballet has played a major role in that recovery.

I’m not recovered yet and we don’t know if I’ll ever be as functional as I was before. We have to remember that it was only this year that I was finally diagnosed with the disorders. So we’ve only truly just begun to understand the cause and effect of my body’s impairments.

I’m actually classified as disabled right now. But I’m hoping, through dedication, the right team, hard work and passion, that I will end up being not only as functional as before, but MORE functional than before.

And all of this means there are changes. My goals and hopes are shifting and what I want to do, write about and talk about is also shifting.

I love everything about ballet. But my interest in the therapeutic benefits of ballet is growing quickly. It’s interesting to remember that I started ballet as therapy for depression, and it worked. Then when I came back to it after my break, I did so as therapy for my body, and it is working again.

Over the past year I have spoken to many doctors and physiotherapists about ballet as a physical therapy and there has been an overwhelming view that it can be a great therapy when done right — and certainly that it is a great therapy for me and my body’s particular issues.

So physical rehab ballet is becoming the core that my whole life revolves around.

And this has lead me to a shift in the focus of my online platforms. 

For a long time my online presence was Bush Ballerina, because when I started ballet, my focus was on trying to learn ballet from the bush with little to no instruction.

But with all the intense changes in my health and subsequently my focus, my path is no longer resonating with ‘Bush Ballerina’. 

I’m more than ballet in the bush now.

So I’ve decided to make some shifts to my online presence so that what I’m doing and what I’m writing about is all synched up. πŸ™‚

The centre of my focus will still be ballet, in both a fun way and in a therapeutic way as well as some of my just me stuff. I also just want to share my personal journey as I recover from an onslaught of two disorders, to a stronger, more functional and healthy person (via ballet). Because I think a lot of people can resonate with having to fight to get yourself to a better place.

But it will all mainly be focused on ballet. Because I believe that is what is at my core recovery. And because ballet is beautiful to me.

I realise few people will even be interested in the reasons I’m making these changes, but I felt the desire to explain for those who are interested.

And to explain the change from ‘Bush Ballerina’.

I’m not sure what the name shift will be yet. I feel like using my middle name, so Zoe Inez. It might just be something plain like ‘Zoe Inez – Adult Ballerina’ or something a little more specific like ‘Zoe Inez – Ballet Therapy’. I’ll work that out soon and let you know. 

I’m open to suggestions! Haha.

I can’t wait to get going with the new focus. I have so much enthusiasm for where I’m coming from now and I feel like this is going to allow me to be more authentic about my journey, will which allow for a lot more interesting, fun and beautiful content.

I hope you all continue to twirl along this journey with me because I cherish you all so much.

Love and light,

Zoe

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Uncomfortable Truths

Pictures speak a thousand words but sometimes they hide a thousand more.

All the social media platforms we all use are so great in connecting us with other people travelling a similar journey or following someone who inspires you or being able to inspire others yourself.

But with these social media platforms can come  the temptation to create a facade of your life because all the snap shots you post from small moments in your days combine to create a big picture that looks like you’ve got it all together.

Social comparison is not a new thing. But it’s a growing epidemic because there are so many more ways we can socially compare ourselves to others now.

And I think sometimes we can use it to hide the uncomfortable truths about ourselves that either we are afraid to share, or we think others are afraid to see.

Unfortunately, there is so much shaming from society about so many parts of our lives, that it can become impossible to feel okay about ourselves.

So I’d like to start sharing my uncomfortable truths more. And here is my first…

One of my chronic health conditions (POTS) causes muscle tremors. They’re always there but vary in severity. Sometimes I wake up like this and can barely hold a cup of tea, and sometimes they are milder. They are throughout my body. 

They are always this severe or worse about 10minutes into a ballet class or other physical exertion. Imagine the shaky legs you feel after an intense workout, except your muscles are actually spasming. All over your body.

It comes from my malfunctioning autonomic nervous system. Often I can also feel these tremors on the inside as well. Like all my organs are shaking.

That’s my first uncomfortable truth. 

I was mindful about posting this. I know I may lose a whole lot of followers who think they’re following this great pair of ballet legs that turn out to be the bottom half of a very fallable woman who’s just chasing dreams in spite of her everyday (and quite unattractive) struggles.

But fuck it. I don’t want to be seen as perfect because I’m not perfect. I don’t want to be seen as just a pair of legs because I’m so much more fabulous than that. 

I may be flawed. But life is flawed. 

Just because Mother Nature can cause intense damage, doesn’t mean you would deny that she is also overwhelmingly beautiful! Such is us humans. Flawed and fabulous.

I may struggle and fall and fail, but I will keep trying. And it is in the trying that lays my success.  

I’m going to keep posting more of these uncomfortable truths. Because I want them to become comfortable truths. 

Because it is okay that I am who I am and my body does what it does. This should not be something I feel ashamed of.

I’m going to hashtag these posts #uncomfortabletruth 

If anyone else feels like they want to share one of their uncomfortable truths, I’d love to hear it, so please tag me in your post. I will support you and love you regardless. You will not be shamed by me. I will respond by hash tagging your post #iloveyourtruth. Not because I love your struggle, but because your struggle is part of you, the whole you, and the whole you deserves love. Not just the social media presented you.

These posts are not to generate pity, they are to generate solidarity among each other, that we will not be defined by social comparison any longer. And that we are strong, amazing individuals, who are living our journeys and respect the challenges that each of us face.

And if I lose followers from all this then so be it. I’d rather promote self-love and acceptance with fewer people than self-abuse with thousands.

Love to all xxx

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