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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

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When the Repressed Rise

‘Why do gay people need to display their sexuality? Why can’t they just keep it quiet? Why do they need to make a big deal about it?’

I keep hearing this, and other versions of this, regarding other sections of society that have been repressed and are attempting to step forward and be accepted as equals.

I’ve heard it about the Black Lives Matter campaign, that some feel should be ‘all lives matter.’

I’ve heard it in relation to feminism as well.

‘Why do women have to rave on and on about how they were treated in the past? Or ‘pull the woman card?’

So, here’s my attempt at an explanation.

There’s a genie in a bottle story — I’m fuzzy on the details but my version goes like this…

If you take a genie and you put it in a bottle and leave it there for 2 weeks, then let it out, it’s going to be relieved to be out of the bottle, it’s going to be relieved to be able to move around and to feel free again. It may even thank you for letting it out.

If you leave the genie in the bottle for 6 months, then you let it out, it’s gonna be relieved to be out and to have its freedom, but it’s also gonna be a little pissed at you for squeezing it into the bottle in the first place and leaving it there for so long.

If you leave the genie in the bottle for 2 years, it’s gonna come out and primarily be pissed at you for leaving it in there so long. It’s gonna be angry, upset and hurt. Maybe even confused as to why you did this to it.

If you leave the genie in the bottle for 10 years, it’s gonna come out mad as hell. It just lost 10 years of its life. A decade of feeling like no one gives a shit about it. A decade of feeling like it isn’t important and of not being heard.

At this 10 year mark, before the genie decks you, it’s probably gonna scream every obscenity at you, and attempt to get you to understand how you’ve made it feel.

It will probably want you to acknowledge what you’ve done and maybe even want to get some kind of redemption or compensation for it.

Then it will never talk to you again. And it will only ever remember you as the arsehole who locked it in a bottle for ten years.

——–

Imagine, then, what the genie might feel and want to do if you left it in the bottle for thousands of years.

Thousands, of years.

The genie is not going to be mad as hell, it’s going to be explosive.

It’s going to be outraged.

It isn’t going to feel like the fight is over just because it’s out of the bottle. It’s going to want justice. It’s going to want you, the bottler, to be held accountable.

I can see, then, why some people might think it’d be easier not to let the genie out of the bottle now, after those thousands of years.

If you’ve left it in there for so long, and you know how outraged they may be if you let them out, then you know they may be so disruptive once let out.

Much less mess if we just keep the lid on it, right?

Well, for some, sure.

But when we shift our minds from the genie analogy to our very real social minorities, then it’s no longer just a story about a genie.

Now we are talking about humanity. And we should see it as a humanity — because we ARE talking about humans.

You cannot repress people for just being who they were born as — for just not being born, a man, or a heterosexual, or white. You can’t repress people for that, and then expect them to not fight back, get angry, want justice, make noise, and seek redemption and acknowledgement at some point.

At some point they’re going to rise. Come out of their metaphorical bottles.

And you can’t expect them to not dance in the streets and rejoice publicly when they make progress in their quest to be seen as equals.

So, the very act of wanting a once repressed person to repress their joy when they are no longer repressed, is ironic and nonsensical.

I hope, in moving forward, that I am witness to many more public displays of love and joy when the repressed rise, become seen, heard and accepted.

I look forward to seeing dancing, singing, hugging, kissing, confetti, and loads of loud and disruptive displays of celebration as each step of equality is taken.

With understanding and compassion to others, no matter how different they look from us, then we can change.

If we all do this, maybe anything is possible?

Zoe xxx

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Don’t House Sit Someone Else’s Life

I spent the first 12 years of my life living in Sydney. In the city. Glebe to be precise. We were all pretty independent kids, catching buses and trains from a pretty early age. Walking through city streets to get to corner shops, parks or friends houses. By the time we were leaving the city, I was a city person through and through.

I knew the sights, smells and sounds of the city like the back of my hand. I still do!We moved out of the city and since then I have lived in a few different places but have never been far from the hustle and bustle and always made time to come and get my city fix. When we had children, I wanted them to experience the city too. So we spent many weekends coming into the city soaking up its culture, sounds, sights, knowledge, people and vibrance. 

I know people who were raised in the city, who just loved getting away from it. But that wasn’t the case for me.

For me, those first 12 years imprinted city life onto my soul. My love for the city was hardwired. It was done. 

And there has never been an undoing.

The only reason I never moved back to the city was that living there permanently wasn’t good for my health — my asthma and allergies. 

Sooo life goes on. Things change. Decisions are made. People move. We move.

Our hearts are pulled toward the polar opposite of our previous city life. 

We have the epiphany. We want a country life!

We make a plan. A fabulous plan to make our tree change. 

We find a property. Consider employment. Think about the children. Plan, plan, plan.

And it all seems so perfect. The kids will get a country life, they’ll have treehouses and tree swings and animals to frolick with and they’ll run wild through the meadows in floral handsewn dresses and pick flowers and be merrier than we ever could have imagined.

We will have animals that are so full of personality that it makes it simply agonising to say goodbye. We will build our new earthhouse with spectacular views and live a peaceful, stress free, hippie-farming sort of life.

That’s how the story was supposed to be written.

But the story didn’t go exactly as planned. Our story is of us being blind sided by our tree change.

It has taken me a little longer to adjust to country living than I had hoped. 11-ish years, actually. 11-ish years to realise that I was never going to become a farm girl. I still try to learn the country ropes but I still see things through VERY city-girl eyes.

I suppose that’s part of why, during those desperate times a few years ago, I chose ballet as my relief. I was seeking something to find happiness in, as everything was so bleak at that time, but looking around me then, I couldn’t find anything that felt like home. It all still felt so foreign to me then, like I was house sitting someone else’s life.

Things have definitely changed since then and now, ballet is slipping its way back into my life.

The house sitting thing from above really got me. I realised how scary that is, the possibility that I was just house sitting in someone else’s life’s? Holy crap, how terrifying is that?!

Well it’s terrifying for me. I don’t want to reach the end of my life and look back only to realise that I didn’t own my life, that I just house sat someone else’s.

With this in mind I moved forward, and continue to move forward, always reminding myself that I own my life and asking “What do I want to do with it?”

So that’s my message today….

Don’t house sit someone else’s life. 

Your life. Your canvas. Paint it however you like.

P.S: The first animals we got on our property were six chickens. We adored those girls. Until we found out they were guys. 

We had six roosters. 

They weren’t peaceful or stress free. And we weren’t sad to see them go.

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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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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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Your Beautiful Glorious Self

You may think you need to be better.

But you don’t.

You may think you need to be more like someone else. 

But you don’t.

You might feel inadequate in so many areas of your being that you feel you will never be enough for anyone.

But you aren’t. And you are.

You may feel like you’ll never measure up.

But you already do.

You might look around you and only see others doing it better.

But that’s not the truth.

You may feel like you’re falling short. Losing face. 

But you’re not.

You may feel like everyone around you, everywhere you look, are on incredible trajectories towards imminent success while you’re still trying to figure out whether you’re an over or under person when it comes to your toilet paper.

But they’re probably not. And it’s okay if you’re either or both! 😉

Those who have seen my health issues know that things have been really tough for me. 

I could easily think of myself as having a harder time than others. I could easily choose to feel that others have been dealt fantastic hands while I’ve not even been  dealt one full hand. But firstly, thinking that way serves me no purpose. It doesn’t help me at all. And secondly, it’s all relative: there are others who are facing much harder challenges than I am.

You see, I have learnt that comparison is poison. It only creates anger, contempt, jealousy and a whole lot of other negative emotions. And it’s completely unnecessary. So we can opt out.

We can opt out.

I want to hug the world right now. I want to tell you all, whatever your battles, whatever your goals, to please stop believing that other people have it miraculously easier than others.

I want to especially tell the world that your self-worth does not lie in where you measure up against the people around you. 

Your self-worth is measured purely on the value you give yourself. 

The only person who gets to decide what you’re worth is you.

Do you hear me?

YOU GET TO CHOOSE!

You! No one else. Just you.

And the true beauty of it all is that no assessment is needed.

You’re worth the fucking world, because you were born. You deserve love, because you were born. You deserve respect, because you were born.

Don’t start assessing yourself. That’s being an arsehole to yourself. Don’t do that. 

Seriously, no assessment needed. You’re awesome. Just as you are. You’re doing what you do, aiming for goals, attempting this thing called life, in your way, how you see fit. 

You can do life, the way it feels right for you. 

Because living life by someone else’s rule book sucks a bag, and is completely unnecessary.

If you start doubting your ability to just be you, remember…

Your beauty lies in your flaws. 

Your true self can only shine in your vulnerability.

You are accessible through your mistakes.

Absolutely. Every. Single. Person. On. The. Fucking. Planet. Fucks. Up. All. The. Fucking. Time.

Most people are just scrambling hard to hide their mistakes.

But they’re making them. Oh, boy, are they making them!

It’s impossible to not make mistakes, to not have flaws, to not be imperfect.

So, world, take a breath. 

Give yourself permission to be you. 

No comparisons needed.

No comparisons wanted. 

Just be your beautiful, glorious, unique self. 

xxx

P.S: photo of me, being me…