Happy New Year!

It’s the 1st of January.
*Cue all the motivational quotes about the new year being a clean slate, a fresh start, a new day, the chance to seize your dreams…*

But my 2016 was ushered in by our neighbours loud, drunken partying, complete with obnoxious music turned up to 11. We had the bedroom door, windows and blinds closed, and put the air conditioner and fan on for white noise. I had headphones over my ears. But I could still feel the bass thumping, and the shrieking and hollering made it impossible for me to sleep until after 1.30am.¹

Consequently, Mr Happy and his visiting sister (unaffected by the late night) have headed off to the beach for a day of sun, sand, surf, hot chips and gelato… and I’m lying in bed feeling tired and cranky.

“Happy New Year,” I grumble sarcastically to the empty house.

*    *     *

Control over our day-to-day life is an illusion. Even a healthy person can get a flat tire on the way to an important meeting, be pooped on by a bird when they walk outside to get the mail, or come back from holidays to find their house has been turned into a swimming pool by a broken pipe in the kitchen. We can’t control everything.

But sometimes I feel like, as a chronically ill person, I have even less control. Not only do I have to deal with flat tires and poopy birds and broken pipes, I have a flat, poopy, broken body to deal with too. Not just the occasional cold or an annoying sprained wrist, but a constant battle with a body that just doesn’t want to function.

Tiny things, ones that wouldn’t even warrant a hitch in a healthy person’s stride, whack me painfully to the floor. A virus, a night of poor sleep, a small course of antibiotics, a humid day… such ‘tiny’ things have a big impact on my quality of life.

It makes it so hard to keep trying.
So why bother?
Why bother busting my butt, trying to maintain a balance, when just one tiny thing throws it all out of whack?

*deep breath*

It’s because I care.
I care about my quality of life.
That’s the reason my lack of control (and the lack of consideration from others) bums me. I want to DO things! I want to BE things! I don’t want to just carefully save up my spoons to do basic things like showering. I want to go camping. I want to play piano. I want to take the dog for a walk. I want to potter in the garden. I want to go to the beach with Mr Happy and lie in the hammock and smell the salty air and eat hot chips and fresh fish.

So I will keep doing my precarious tightrope walk, my challenging balancing act. And if I fall off – when I fall off – I’ll remind myself why I was up there in the first place, and try again.

Looking back on 2015, I can see there was places where I just sat in the net and gave up. I’m cutting myself some slack – Mr Happy had just become chronically ill, and I was helping him with appointments and testing and treatments and taking on some of his workload because he couldn’t do it all. I put my own health on the back burner, because getting diagnosis and treatment for Mr Happy was urgent. But after he got diagnosed, and the treatments started helping, and he was able to take back most of his workload… I didn’t move my health off the back burner. I’d become comfortable, just sitting in the net, underneath the tightrope. I was tired. Not just physically tired, but also emotionally tired. Tired of trying and trying to balance on that tiny rope, and constantly getting pushed off.

That’s not to say I did nothing to improve my health in 2015. I saw a new specialist. I trialled the two ‘miracle’ medications, Midodrine and Florinef (alas! neither of which helped me). I had pacemaker surgery (kind of twice!), and I had multiple blood tests and ultrasounds done.

But an email from Alexx Stuart (food blogger with an emphasis on healthy food and low-tox living) that popped up in my inbox this morning really made me stop and think.

“You set your priorities”.

Simple, elegant truth.
I don’t get to choose what happens every day.
But I DO get to choose what is important to me.

My health will never be the most important thing to me. The number one spot is always reserved for the One who made me. And although I don’t have control over my day-to-day life, He does, and I trust Him with my eternal trajectory.

But Alexx’s email was a good prod to keep wobbling along with my balancing act. My health IS important to me. I’m reminded that it influences not just my quality of life, but also my ability to interact with and support family and friends – which impacts on their quality of life.

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I’m not a big fan of “New Years Resolution” lists (they seem more like useless ‘wish lists’, with an unpredictable body like mine). But when Alexx suggested taking some quiet time to think about these four points, I found myself getting out a pen and pad of paper.
(Note: She warns that you might have to edit your answers multiple times to get down to what is important to you, rather than what is expected of you by others.)

1. List what made you happiest, gave you the greatest feeling of peace, energy and satisfaction in 2015.

2. List what frustrated you, or made you feel sad or down.
(e.g. repeated daily tasks, that stressful situation, certain people, processed food, health problems).

3. List the things you want re-prioritise to make sure they don’t slip away again: the things you really wanted to do in 2015, but didn’t.
(e.g. little things like organising your photo stash, big things like starting your own business).

4. List what you’re dreaming of achieving for yourself, family, and/or community this year.

When you’ve finished your list, you can use it as a guide for the coming year. You want more of number one, and less of number two. And the only way you’ll get any of list items three and four done is to hop back up on that tightrope, and do your balancing thing. You can’t choose what happens, but you CAN choose to fight for what matters to you.

“Happy New Year,” I smile down from my position on the tightrope, wobbling a little. Then I look back up, content to keep plodding along.

xx S.

Five things that made me happy in 2015…
* Getting my pacemaker implanted – and it HELPING!
* Starting a blog in August, and receiving lots of positive feedback.
* Learning how use a digital drawing tablet and software.
* Starting my own comic series.
* Finding out that my blog has now been viewed about 20,000 times from people in 79 different countries! (If it were a concert at the Sydney Opera House, it would take 7 sold out performances for that many people to see it!)

Do you ever get tired of the ‘balancing act’? What helps you to keep going?
What will you be prioritising and fighting for in 2016?

 


¹ Yes, I have spoken to the neighbours about their loud parties. They’re friendly and apologetic when approached, but don’t lower the volume when it comes to party time. Yes, I have made noise complaints to the police. The police come, the volume goes down, the police leave, the volume goes back up. I don’t have the energy to keep chasing them up about it. When we bought this house, it was a quiet street of mostly retired elderly people. Unfortunately, since then, the elderly couple on our right have sold their place, and been replaced by a loud family with a tendency to yell everything and host loud nighttime parties. The place on our left is a rental, and the occupants seem to change every year, but the current ones like loud nighttime parties too (they hosted the New Year’s Eve party), with strobing lights for added impact. I’ve explained my illness, even giving them a short letter that listed what I have and how it affects me. I’ve done my best to befriend them – taking over freshly baked cookies and brownies in the school holidays, giving them chocolates for Easter and Christmas, chatting with them when we’re both out the front. And they’re perfectly pleasant and friendly in return… just… loud.

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