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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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Working Up A Sweat

I have never sweated so much as when I used to do ballet classes, before the break. 

I had actually never really experienced sweat like that before. I remember at my Sydney studio, where the class standards are super high, I would have beads of sweat dripping from my wrist to the floor towards the end of the first pliΓ© combination. It was the first time I had ever seen people take sweat towels into a dance studio.

I loved that. 

For me, apart from the burning muscles, the sweat was the most immediate concrete evidence of how hard my body was working.

I really, really, loved that.

Then once I had some recorded private classes to learn from at home, I started, and continued, to work up that fabulous drenching sweat during my home classes too.

I posted many a sweaty post-ballet photo on Instagram. 

As someone who had never been good at ANY athletic activity, I was wearing that sweat loud and proud!

And I’m delighted to say that I have started getting my sweat back. Which is telling me that I’m able to work my body harder and harder. 

This is exciting stuff for me right now.

Today, I wasn’t able to do anything else apart from my ballet and exercise bike/physio, as I’m very wiped out from a few big days, BUT I’m sweating y’all! 

And… I. LOVE. IT. πŸ™‚

In fact, today I managed a warm-up tendu exercise, a full pliΓ© combo left and right AND just a little bit of extra foot work.

With the addition of the bike straight afterwards, I was drenched in sweat! 

So, here’s to sweating it out!

Zoe xxx

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My World is Changing, Are You Coming With?

My whole life I have had this bizarre and unsettling pattern of health where things suddenly crop up, like overnight, without any warning or seeming link to anything else that has been going on. It’s always been a little disheartening, as you feel like you’ve recovered from the last thing and you literally can wake up in pain from the next thing — then you need to go and investigate this next thing.

It’s exhausting.

But some health issues don’t come up overnight. Some issues creep up over time. You can see them coming.

In my last blog post I wrote about how I had found a physiotherapist who was going to help me possibly return to dance.

A few days later I traveled 9 hrs return by car to a specialist where I was diagnosed with restrictive lung disease. I was shown the results of my lung function tests, which show moderately impaired function.

It’s not that I saw lung disease coming. That part was a little shocking to hear. And seeing the results of my lungs compared with a healthy set of lungs was a little disturbing (read “a lot”), but I did know that something was up.

I started noticing a change back in December. Just very slightly. I thought it might be a flare in my asthma (it is not). From there, I increasingly felt tighter in my chest faster, during ballet classes, when I walked anywhere etc. etc. Then over the past 3 months it has just gotten worse and worse. I kept pushing myself for a while, until I couldn’t. The GP tried steroids and high doses of ventolin, but when those didn’t improve me much, he finally referred me to a specialist.

Some nights I would go to sleep asking my husband to please check on me through the night, because I just felt like I could easily stop breathing in my sleep. I am more relaxed about it now, I think because I’ve been experiencing it for a while, I just trust that it won’t get that bad. But I do have to watch how hard I push myself as it is sometimes pretty scary when I go too far.

At the moment it’s like this: If I do something like put the dinner on to cook AND pack away the clean dishes, I then need to sit down to recover my breath and I cannot talk for a little while as it’s hard to regulate your breathing while talking. After about 10 minutes I usually feel okay enough to talk again.

I am now waiting to see a new specialist for further testing to try and find the cause. I have everything crossed that we find the cause is something that can be reversed or improved upon.

I also found out that what I thought were 2 more hernias in my abdomen are actually 1 large one. Ugh. No wonder I have been in so much pain! Anyway, will need to have those repaired sooner rather than later, and meanwhile I am pretty restricted in the movements I can do without causing immense pain.

So, now that those things are out of the way, I’d like to share something with you all. I have been thinking, like, a LOT, recently. I have missed writing for myself and interacting with my blog friends. I have missed feeling inspired to write. And I have struggled with being in so much discomfort, not knowing what next week holds for me, and at the same time dealing with the feelings I get when I come on to try to write something on Bush Ballerina. Because right now, ballet isn’t my thing. And I’m kind of hurt by the reminder.

I recently thought about the idea of dropping Bush Ballerina altogether but it didn’t feel right. I haven’t given up on the idea of dancing. But at the same time, it’s also not at all what my focus is on right now.

My focus has shifted pretty radically. I seem to be in what us EDSers call ‘a major health flare’ where a lot of my body’s bits are just chucking tantrums left, right and center. I also have a few health issues that have come up that I am learning may not go away. And whilst that’s not an easy thing to accept, it is a pretty blunt kick up the backside, to get my priorities right.

Right now, my primary focus is on health.

But I don’t want to stop communicating with all my beautiful blogger friends. ‘Cause I loves you all! πŸ™‚ I also like the mental clarity I get from writing my thoughts down in blog form.

Sooooooooo, after much thinking about it, and a little teariness πŸ˜₯ I have decided to keep blogging here but make some changes. The ballerina part is not relevant now (more sobs πŸ˜₯ ), so I will be changing the name and the header. And I suppose the biggest change will be my content. To be honest, I’m not sure how my content will play out. I’m mostly interested in writing about the positive things I find helpful to my health (like the aromatherapy I have started using for instance) and just my observations on what works and what doesn’t.

I will write updates on my health stuff, andΒ I’m sure there will be blog posts that are me writing the raw stuff out, and I’m okay with that as that stuff is real, and real is important. But I don’t want that to bog the blog down. I am more interested in finding answers and keys to unlocking positive health change for myself. And I want to write about all the other awesome stuff that I do in my life, too! πŸ™‚

I don’t really know how it’s all going to unfold from here. But this is sort of a new blogging path and I’m really glad that I have finally chosen to take it. I’d love all of my fans/friends/followers to come along for this next part of the journey, but I understand if some of you feel the end for us is here.

So, like a choose your own adventure book, you have a choice:

A) Cut the ropes that bind us and sail off into the sunset on your own, knowing we shall always remember the good times we had, or…

B) Stick around,and find out if there was more to “cut the ropes that bind us” than a cute metaphor πŸ˜‰ (Just jokes. I’m not into ropes, but I would love you to stay! πŸ˜€ )

For those who are leaving, I wish you every happiness and thanks for travelling with me this far.

For everyone who is hanging around for the next part of the journey, welcome aboard — let’s go!