Uncategorized

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.

Uncategorized

Patience

Drawing from the lounge – I’m only allowed to draw five minutes at a time and only a few times a day. Makes completing a mandala a very slow practise. Very frustrating but doctors orders.

If patience is a lesson I’m supposed to be learning via these health issues, I’ve been studying it intensely for 3 or more years now and I think I’m well enough versed to be given a university degree with honours! Haha.

At least I can draw at all though, right? Trying see the positives. Hope y’all are having a great day/evening- wherever you’re at.

Uncategorized

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!

Uncategorized

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