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Dear Dream Seekers

Dear Dream Seekers,

You are wonderful. You are inspiration. You are life being lived.

I love seeing so many adult ballerinas emerging currently. Particularly on Instagram, it’s like watching these beautiful buds of hidden desires start opening their dare-to-dream petals and blossom into the most beautiful, soulful dancers.

Something I have noticed is that there seems to be an ever persistent pressure flowing from within many of the adult ballet students I see.

Inner pressure to be good at something we love is not a new thing. It is natural to want to progress.

And I am no stranger to that inner pressure. I felt it. I breathed it in and out, day and night. And it happily went and killed my love of ballet (for a while.)

And so I feel a little sad when I see people putting huge amounts of pressure on themselves to be better at something they love.

I mean, if you love it, then you should be doing it for love.

Let’s repeat that: If you love it, you should be doing it for love.

I know that you want progress. And I know that the ballet studio is a pretty intense place regarding your progress — indeed, it can sometimes feel like a comparison festival is happening in each class.

Everything you want is a valid desire. Improvement, enjoyment, strength, musicality, memories, flexibilities. It’s up to you what you want to aim for. It’s your life. Your choice. No-one else can, or has the right to, choose them for you.

But please be sure to think about it first. Think about you and what you really want because of how those things make YOU feel.

Don’t look at what someone else is doing and just follow along. God knows, you might wake up ten years from now able to do the splits but not able to dance in the centre. You might then shake your fists in the air and scream at yourself for following the splits trend only because it was what others were doing — and you missed getting your teacher to help you learn some amazing mini-solo piece that feels like heaven to dance.

Don’t set yourself up to one day wreak of regret.

So, with that in mind, what I do hope you do is sit with yourself a while. Ask yourself what you feel in this moment you want to do — like actually do right now — because you never know what amazing idea might have been waiting to flow through you but just hasn’t had the window opened to it before.

Then, ask yourself what you think you might regret NOT doing in twenty years time. I usually get my deepest inspirations flowing from this one.

Then lovingly think about all the things you, your body and mind, are good at doing. Really appreciate those things. If ballet is your thing, maybe you’re really musical and your body just naturally flows with the music, maybe you have lovely hand expressions, maybe you have a sparkly passion, maybe you have strong muscles, maybe you can smile during class (harder for some than others!), maybe you understand combinations, maybe you are flexible, or have lovely feet, or maybe you feel your soul fill up during ballet class.

These are all wonderful elements of what you do and of how you feel. I feel it’s important to fully embrace them. Soak yourself in the things about you and your passion, that you love.

When thinking about what goals to set yourself, or what path to set off on, I think it’s really important to take stock first, of all the wonderful parts of yourself that already exist within your passion.

I would look at what you love doing now, look at what you would regret not doing, and set your path accordingly.

If achieving the splits for ballet is part of that path then set your goals and go for it. If it’s smiling more during class, or learning a combination, or performing — then set your goals and go for them.

But be sure to start your intentional path with the full acceptance of how incredible you already are.

Be sure that you don’t discount all of your gloriousness and just focus on what you cannot yet do. If you do that you will be starting your journey with a destructive cycle of focusing on your downfalls. You should be real about yourself. But leave the negativity at the door. If negative self-worth is already an issue for you then I would suggest adding that to your goals — “Learn to love myself for all that I am.” That, and if neccesary, see a therapist, because honestly, that bullshit will become a serious obstacle to you fully realising your dreams.

So, in summary…

1) Align your goals with what YOU enjoy doing and what you feel you will regret not doing.

2) Make sure to begin your path to your goals/dreams/passions swimming in self-appreciation for all the wonder you already are.

Always remember why you’re doing it.

Always respect yourself for doing it.

Always hold your head high.

Remember,

You deserve to be in the room.

Zoe xxx

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Above and Beyond…

Paramedics were called out again this afternoon. Not great.

HOWEVER…

While here, they told me about the headway they’ve been making in getting our little rural hospital to give me regular, preemptive special IV therapy.

The idea being that this IV therapy would hopefully reduce the amount of times I need emergency calls to ambulance services, helping me to not get as severely sick as regularly as I am at the moment and not clog up their services when someone else could be doing it. It’s not a perfect system but it’s better than anything we’ve got going now.

We’ve been trying to get doctors and community nurses to make this happen for a long time now, without any luck.

So one of our amazing paramedics decided to march up to the community nurses and the hospital and see what they could do to get it happening for me.

And today, one of these amazing paramedics said he’d convinced the hospital and nurses to give it a try and see if it helps — probably just over summer, as that’s when I tend to need this treatment the most.

It just blows my mind when I see someone go above and beyond, to help others.

Thank you Mr. Paramedic. You rock.

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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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Love Your Life

I find this quote both natural and confusing.

Having had pain as part of my life, for my whole life thus far, I adjusted to my pain. Adjusting to my pain doesn’t mean I got use to it and it no longer bothers me. 

Sometimes I am a moaning mess because of my pain.

Sometimes I go to sleep at night, tears rolling, because of the impossible amount of pain I’m in.

So when I say adjusted, that doesn’t mean my pain is gone gone, it means I have have managed to train myself to look passed it so that I can still see whatever I need to see/do to get my day done.

But when this quote popped up this morning on Instagram, it got me thinking.

Yes, I was well versed in adjusting to my pain. And yes, I excelled in not letting my pain stop my day from continuing. But there had been something missing, and this morning I was remembering how a couple of months ago I began to recognise that something was missing. I began to turn inward to my body to try and feel where the missing part might lie. I began to think about the theory behind this quote: 

Love your life more than you hate your pain.”

I knew I had been half doing it all my life, by default, but I wanted to feel better about myself, so I kept thinking. And then I realised…

The difference between sort of living the theory of this quote, and fully living the theory of this quote is overly simple: when you’re sort of living this quote, you’re managing your pain so that you get all your to-dos crossed off each day’s list. 

When you’re fully living what this quote is suggesting, you’re not just managing pain to feel as little of it as you can. You have a list of things you WANT to do and who you want to do them with. You give thought to how you want to feel emotionally, while/or after, you’ve done those things. You make a note of what memories you want to make for your family.

And you’re managing your pain … to actively seek those things. Those feelings, memories, thoughts you’ll have forever, and more importantly, if you have children — the feelings, memories and thoughts that they will have forever — rather than just managing your pain for the relief you might get.

Don’t get me wrong, I’m not down playing what effective pain relief can do for a person. 

I’m just saying I think you can do both. Not all the time, sometimes pain sends you round the bend and it takes a lot of management — and that’s your day or night.

But a lot of times, you can think about your life, that day/week/year and what you want to get out of it. And then think about managing your pain levels so that you get those things done!

Before, I was thinking about my pain, how much of it I was in (how it was even possible to endure that much pain for such an extended period of time, and how I could manage my pain that day/week, whatever.

But these days, for instance, I might wake up in the morning, and instead of just allowing thoughts about my pain to begin my day, I will think to myself that I want to go to the beach with my family that day, and then I will think about what pain strategies I might need to employ, in order to make that day at the beach as successful as possible.

These days, I’ll start my day’s thoughts off with whatever it is that I’m wanting to get done, or experience, or whatever — and THEN I’m thinking about my pain and pain strategies from that angle.

My point is that before I was thinking more about my pain, than my life.

Now, I think more about what I want to do in life, than my pain.

These days things are much different for me. Allow me to be super clear. I do not feel less pain because of this. But I do think more about how much life I want to live, in spite of my pain.

And this shift in thinking has been life changing for me. I can’t achieve it all the time, but I will continue to try.

Hope this helps someone out there not feel so alone.

P.S: apologies in advance for the brain fogged moments that are bound to have snuck into this post. 😉 

P.P.S: the reason I also find this quote confusing is because I’m not sure you can’t love your life AND hate your pain at the same time?

Zoe xxx

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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!