Where Stuff’s At …

Wow, I love the memory of being such an active blogger.

Unfortunately my health has continued to decline and writing has become very difficult for me. I’m learning the speak to text strategy but it’s not the same. I seem to think while I’m typing, so trying to think while speaking feels much more like being put on the spot.

Anyway, I’ve also been extremely unwell over the warmer months, with my health just seeming to get worse and worse. So I just haven’t had the energy to write OR speak a post during this difficult time.

I hate to sound soppy and self-pitying, but I’m not sure this post can come across as anything but?

I really got a bit sad that I wasn’t getting any of my thoughts out there or discussing things with the interesting people I know follow this blog. And I wanted to firstly, start my blogging back up again, and secondly, fill you all in with where I’m at.

So … let the soppy begin …

As I said above, my health has deteriorated. But to be clear, it has deteriorated intensely.

I now have paramedics out every few days, sometimes every second day. I do this when I am extremely syncopal (passing out) and need IV fluids to fill my blood volume again, to prevent the syncopes.

I’ve also had a lot of hospital trips when the paramedics couldn’t stabilise me at home.

And there’s been the occasional admission to hospital for migraines and severe pressure headaches that are un manageable with my medications and also go on for several days.

At the same time, we’ve had a billion other things we’ve been trying to tend to.

One of the things we’ve done that has proven pretty fruitful, is to keep researching the conditions I have. We realised that one of the conditions I have, that has to do with mast cells, is linked, or mirrors (if that makes more sense) someone who is allergic to a huge amount of stuff and whose allergic threshold lowers to the point that they begin having allergic reactions to things they have never reacted to before. So this particular allergic threshold spirals further and further down, creating more and more restrictions in foods, household items like soaps etc., medicines or medical equipment (like the tape they use on cannulas etc.) and environmental factors such as pollens, chemicals, grasses, trees, weeds — all of which I am surrounded by.

From the outside, it basically looks like my body is shutting down on itself.

No. Not a very nice thing for the witnesses to watch or me to be experiencing.

But at least we figured out, through a variety of methods, that a better climate, where the environmental allergens are much less impactful on my body, is what I need — quite urgently.

Every doctor that we speak to urges us to move to a high, dry and cold environment — every. single. doctor.

I have to admit, that was a bit of a shock at first, but the more we researched and talked with doctors and the more we looked back on my life and remembered the times I have been very sick while living in an environment full of things I was allergic or sensitive to, and then we moved to a better environment for me and my health improved dramatically — the more everything began to make more sense.

When you’re trying to explain it to people for the first time it’s really difficult, so hopefully I haven’t just confused the crap out of y’all. πŸ˜‰πŸ˜‚

But now that that’s done, I feel like it might be easier to just get on with blogging or vlogging without quite so much confusion around why my body is as unwell as it is.

I have had so many posts I’ve wanted to write or videos I’ve wanted to record, about things like the silver linings to being so disablingly unwell, our amazing paramedics, watching how families can bond tighter in these situations as well as all my ballet stuff … which, to be honest, isn’t very much but it’s still my favourite passion and I still want to talk about it.

I’m proud of myself for continuing my exercise regime and my ballet-physio every day (most days.) Even though I only do a tiny amount now, I am holding hope in my heart and determination in my mind, that one day I will be able to do so much more.

Boy, do I have plans, for when I get my health back.

Anyway, we have started a fundraiser for us to hopefully be able to afford to buy a caravan and then we’ll just move into the caravan, in the better environment that we know my body responds well to.

So the fundraiser is at the link: Zoe’s Fundraiser

If you feel you’re in a position to donate to our fundraiser then that’s fantastic. If you can’t donate, you can help just by sharing the fundraising page.

Alternatively you can also like our Facebook page at: www.facebook.com/helpzoegetherlifeback and share the page or posts you like.

Ok. That’s it for now, guys. If you read to the bottom, thank you. You’re a gem. If you didn’t, I just hope you read enough to understand where I’m at, because I won’t be explaining it over and over again.

Much love to you all. I hope you have a wonderful day/night/moment today.


Zoe xxx


A Happy Ambulance Ending

Usually an ambulance call doesn’t qualify as making my day particularly surprising. But today was different.

Today included an ambulance call. And FIVE bags of IV fluid.

I must’ve really looked like shit too, because the paramedics rushed the first two bags of fluid through by squeezing the bags manually — I suppose my repeatedly passing out three times in front of them, helped inspire said manual squeezing of IV bags.

Anyway, the really exciting thing was that they said they watched the video on POTS that I sent them, and it really helped them understand it more. They also said they had sent it through to several other ambulance stations and the head of Ambulance NSW, and they had said they would probably send the video out to most of the NSW stations.

They asked more questions and said they wanted to learn more.

I felt awesome about this.

Watched my negative become a positive.

Going to email the POTS video to my GP next.

Anyway, I’m posting it again, in case it helps anyone recognise the condition in themselves or in someone else.

POTS Video


When Wrong Becomes Right

I was tired. It was late. And an accidental slip of my finger saw me press the publish button on the wrong post.

The last post I published. The one about my dreamΒ was never meant to be published.

I write lots of posts that remain in the drafts folder and never see the light of the internet. Two days ago, I wrote two posts. Late that night I read over each one to see if either deserved to be published and I decided on publishing one of them. But that one wasn’t about my dream. After reading over the “I had a Dream” post I had decided it might come across as too wish-washy and flaky. It was a truthful account of my ballet dream but, I don’t know, maybe I just felt too exposed putting that out there — as it does seem kind of far fetched.

So when I checked my blog to see that the post had loaded properly and saw that the wrong one went up my heart jumped into my throat. “Oh darn it!” is the polite version of what went through my head, and “Should I delete it?” was the next thing. I quickly realised that I was too tired to think about this and decided to leave it, go to bed, and deal with it in the morning.

And I’m so glad that I did.

That accidental slip of my finger lead to some of the most encouraging, inspiring messages I have ever received. From other dancers and non-dancers. From strangers around the world and from friends. I felt such an amazing sense of encouragement and passion. It really blew my mind.

Perhaps the most surprising message I received came from Tibor Horvath, from Studio Tibor. He sent a kind, encouraging and very generous message after reading my post.

I liken this experience to some kind of ballet passion heaven. It was just beautiful.

So I want to say a huge thank you to everyone who sent those messages. You have all helped me to feel more passionate about making my ballet dream come true, for which I am intensely appreciative and grateful.

Also, now if someone questions my sanity when they hear about my dream, I can blame all of you! πŸ˜€

Just kidding (sort of) πŸ˜‰


Our Beating Hearts — Where the Rhythm Lies

Thank you everyone who sent me such warm messages of support. You guys seriously rock. I feel completely blessed to know such wonderful people. You all make my life more colourful!

I had the echocardiogram today and I am pleased to announce that my heart is beautiful. Chockablock full of love. πŸ™‚ Not perfect, but not dangerous at the moment. I am feeling blessed, relieved and joyous.

And yes, I really did lie on the table, watching my heart beating away on the screen up on the wall, with great big smile on my face as I thought of all the dancing we do together. And as I watched the repetitive swing and flow motion of the heart, I hypothesised about whether our hearts might be the source of our sense of rhythm in dance.

Is it possible that the most important dance routine of our lives begins and ends in our hearts, literally?

Do I sound mad? I don’t really care. I am acutely aware that we are all insanely blessed to have a heart that just keeps beating and beating and beating, without rest for our entire lives — which are mostly long lived!

If that isn’t something to be grateful for, then I don’t know what is!

The photo is me on the way home, looking goofy in some ridiculous headphones and grooving out to some of my favourite tunes.

I love all of you and your beating hearts.