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Moments That Change Your Life

A few days ago I was taken to hospital by ambulance. Not a particularly shocking event for me or my family anymore, (although upsetting for those who love me to see.)

Recently I had been feeling the symptoms of my disorders quite strongly: like cement is being poured into my legs (sometimes they go numb), I lose my sight for about 6-10 seconds everytime I stand up, I get really short of breath (feels like I can’t get enough oxygen into my lungs), my heart rate rises very high (like at least 130 – 160 bpm, I lose my hearing, my muscles become very weak and if I don’t lie down, I just pass out — which is basically my body doing what it needs to do to reset the pumping of blood to my heart and brain. Need to reset blood pressure = need to get horizontal = if you don’t lie yourself down we’re going to make ourselves pass out.

Another day went by and by this stage I couldn’t eat or hold fluids down and I had had a migraine for almost two days that was getting worse by the hour, so I reluctantly let the family call the ambulance. Usually Dave would just drive me in to hospital but I couldn’t stand up without passing out. I needed IV fluids STAT, and the paramedics out here know me and know my protocol.

We got set up in the ambo and got going. The paramedic assisting me, has taken me to hospital a few times, so we kind of sort of know each other a little bit, so we chatted now and then, and then he asked: “How’s Dave’s cafe going?” I replied: “The cafe is going great”. Then tears lightly formed as I added: “But it has to close … because of me.”

The paramedic was looking at his laptop at the time but immediately looked at me and said: “Well, not because of YOU. Because of your illnesses, you don’t control that.”

I’ve been trying to tell myself this for ages and my family tells me this, my husband tells me all the time. 

I’m lucky to have close, immediate family, and quite a few friends who are very supportive and never make me feel like I’m making illnesses up. 

But I’ve also had my fair share of people telling me I am making it all up, or I’m a hypochondriac. Despite tests proving these illnesses are real and happening to me.

Even some quite close relatives (who due to distance haven’t seen me or what my life is like) have told me, my children and my husband, that they believe I’m using my illness to control my husband and our children, among other ridiculous claims.

I get people (from the general population as well as the medical profession) thinking I’m faking my illness all the time. Until I pass out in front of them or something visual that they can then believe.

I can’t begin to accurately describe how awful it feels to know that someone thinks I would make this shit up. It is absolutely soul-suckingly awful, to feel like such a burden on other people. So to then hear people question your near death experience or whether you’re “really THAT sick”, just makes me feel a hundred times worse. 

So, when I was in that ambulance, and a third party, unbiased, person verified that it is my illnesses that make my situation what it is, it’s not ME choosing this situation, it was powerful beyond words.

Those words from that paramedic sank in over the next few days and they truly changed my life. I finally allowed myself to believe that I am not to blame for my illnesses, that this situation is happening to me and I am doing my best to work within it, and, as always, working on trying to get out of it.

And it also helped me to realise that when people don’t believe me about my illnesses, then that is their issue, not mine. And it says more about them than it does about me.

I’m always thankful for those in my life who support me, but I wanted to write this experience out as a reminder that you never know what small thing you might say to someone that might make a difference to how they’re viewing themselves and their life.

Cheers,

Zoe xxx

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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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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.

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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