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Choices We CAN Make

Just wanted to say…

You are so worth every bit of luscious love and care you can muster up and give to yourself. You are you. And that is gorgeously right. 🙂 

There are so many decisions that life makes for us, that we have no control over. So I think it is so important that we take the time to think about what satisfies us in life.

At some point our journeys are going to end. Not much we can do about that. But we can do quite a bit to create satisfaction while our journeys are still operational! Take the time to ask yourself if you are happy with how things are, and if you are not, then ask yourself if there is anything you can do to change that. There may be some tiny little moment in your day that you can tweak that will make all the difference. Or you may realise that you want to make drastic changes. 

Make sure you are giving yourself the best chance at happiness. Make sure you are choosing for you.

I don’t mean this in a fluffy, life can be perfect if you just think positively enough, kind of way. But I do believe we are all making choices every single day that have results one way of the other.

Whether they are small or big, they are still our own choices to make and they still have outcomes that you create.

P.S: Obviously I know like throws upon us, different challenges, some seemingly impossible ones. This message was just about the choices we CAN make.

🙂

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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. 😉😂

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.

Love,

Zoe xxx

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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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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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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!