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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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Ballet-Physio Update

A few supine leg stretches. Feels great to be moving again.

Hope everyone is treating themselves fairly, cause you know, unfair treatment of yourself will likely lead you to a place you don’t want to visit.

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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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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