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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!