Fighting My Way Forward & Sailing Away

Mar 17, 2014 by

Dear Audy,

Ever so slowly, I weave my way through more and more activities which, when lined up in a row, spell “functioning”.

They’re the strangest feelings, the ones that come after doing things. Pleasant but partly opaque, difficult to distinguish and define. Feelings like accomplishment, value and joy seem like strangers when they return from a lengthy spell of absence. It takes practice to appreciate their light when it comes shining through the dense fog of prolonged uselessness.

It takes determination to reflect such light, to send it sparkling outwards, trusting that it will illuminate new possibilities.

I’m starting to see more and more things that I could potentially do…

Dreaming about the future helps the process of building a solid launchpad in the now. A while back, I set three goals and have spent the time since then chipping away at them. My physical strength is gradually improving as I go for walks, move around regularly and rest enough in between to keep my pain levels low.

I’ve been on a few solo trips to the grocery store, planned meals myself and cooked some exciting dishes. I’ve eaten a lot more vegetables and a lot less filler. I’ve baked delicious treats that don’t throw my digestion off course and this one time, I even baked a cake just because I felt like it. It was more exciting than it sounds…

I once had to stop a friend showing me pictures of pretty cakes because I just couldn’t wrap my head around the idea that some people have enough energy/functionality to be able to cook for fun and not just necessity. It hurt, to see fun food when I was struggling to simply have meal time food available.

Spiced Orange & Almond cake recipe from Paleo Sweets Cookbook, Vanilla Frosting recipe from Against All Grain cookbook.

Spiced Orange & Almond cake recipe from Paleo Sweets Cookbook, Vanilla Frosting recipe from Against All Grain cookbook.



I have been reading every day, exploring blogs and news and tucking myself in with a novel at night. I’ve been trying to note down blog ideas or general life realisations as they happen, finally accepting that my brain won’t just hold onto them for later, no matter how genius or nonsensical they are. I’m yet to achieve some sense of writing every day, but I see that achievement unlocking, not too much further down the path ahead.

I’m starting to see the pay off for what I have already done.

I was able to launch. Off the launchpad. The metaphorical one that I mentioned earlier. It’s constructed of hard work and dedication to health. Having built up enough strength to launch, I was able to say yes when a spontaneous opportunity for adventure arose.

On Friday, I sailed across Port Phillip Bay with my dad in his tandem peddle powered kayak sailboat thing. It was awesome! The sail means that there’s not all that much peddling to do and each peddle counts for quite a bit thanks to the size of the flippers underneath the boat. It was fun to relax in the sun, soak in the ocean breezes and splash through waves when we headed into the wind.

Melbourne on the horizon.

Melbourne on the horizon.



We were out on the water for most of the day. Afterward, I promptly conked out for over twelve hours, bumbled through some of Saturday afternoon, conked out for another twelve hours and crashed out on the couch for what remained of Sunday. I’m still feeling the tiredness in my limbs today, but I wouldn’t expect anything less.

I do have CRPS after all. It doesn’t give days off, but it does back down a bit when I’m lucky enough to have my treatment and physical strength ducks all lined up in a row.

A chance to expend energy and then be exhausted, rather than flaring like crazy, is exactly what I have been working for.

My goals for strength, health and creativity aren’t finite. I will keep on working at them as long as my body allows it and then some. The stronger I am, the more I am able to control the pain of CRPS and the more that I feel like a functioning, useful person.

I’m so grateful for the lower pain levels that the ketamine infusion have brought, it’s worth working hard in order to keep them down as long as possible.

I will let the light in and then sparkle it out. I will follow where it leads.

Love & Progress,
Caf

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  • 3 Comments

    1. Lori Joksch

      I know we don’t know each other but I am very proud of you. I know how hard you are working cuz as you may know I have followed you for a while as I have CRSP full body and praying for the ins to do the right thing. Any ways happy to hear your progress and I enjoy how well you write. Thanks, Lori

      • Hayley Cafarella

        Thanks so much, Lori! I wish you all the best with your insurance xx

    2. So happy to hear that your doing better these days. I really hope that you keep moving forward the way that you are and that the pain levels stay lower. I’ve been dealing with a really nasty flare up the past couple of days and reading this only inspires me to get back to where I was.