Self-care

Over the last couple months I've had two really wonderful opportunities to participate in some advocacy projects for chronic illness and disability. One is a written/photographed interview for As We Are, and the other an audio interview for In Sickness + In health. I wanted to document them here for posterity, and to share both of these amazing projects. They go beyond looking at the illness itself, and dig deep into what it's like to live with chronic illness and disability in a world that often wants to sweep people like me under the rug.

As We Are

Ariane in purple dressBack in September a mutual friend put me in touch with an amazing young woman, Zoya Jiwa who has started a project called As We Are: style strategies to navigate health conditions. Zoya is a university student who has been living with chronic illness since she was a teenager, and started this project as a way to talk about how style and fashion can be supportive tools when living with disability, and chronic and/or mental illness. She's also been kicking major advocacy butt - she just did a TEDx talk at my alma mater, Simon Fraser University, won the university's Terry Fox award for community engagement, and was named one of this year's Fellows for both RADIUS and The Next Big Thing Foundation! You can tell she's a passionate advocate for both herself and the larger chronic illness community.

(Photo by Zoya Jiwa)

I've been putting off writing an update for so long that I barely know where to begin. This will necessarily be rife with omissions... And just FYI I finally crunched the data on the healthcare experiences survey I had posted (it's now closed to new entries). Thanks so much to everyone who responded! I had some interesting results and am looking forward to sharing them soon! 

It's been a weird summer - things have been pretty apocalyptic. Plagues (bad chronic illness flares for me, plus Bruno and I both had a bad cold/flu virus a few weeks ago - fevers and snot galore), locusts (we keep getting explosions of maggots in our compost bin because of the heat, and they got into our garage), crazy weather (namely the incessant heatwave, though we've finally got a little break from that, but also the couple days of thick forest fire smoke)... It's been one thing after another.

Anyway, let's get to it.

You've got what it takes and it will take everything you've got

I don't want to write this post, but I'm going to anyway, because yesterday led to me completely losing my shit at a medical appointment. I left uncontrollably sobbing, shaking...and not even from the extremely painful medical test I had, but from how much lack of compassion and actual caring there was around providing me the recommended treatment. 

I've been keeping most of my medical traumas private for a while now (aside from what I put in issue 2 of my zine), after being shamed and judged by several people for talking about my health related experiences. But I'm working on overcoming the feeling that I need to keep quiet about these experiences, because I feel it's an important part of demystifying chronic illness and advocating for better understanding and care, for me and others who are sick or disabled. I don't want to let the judgment and shaming of a few people silence me, so I have to keep telling my story.

I guess the end of the year is as good a time as any for this big, nay enormous, long overdue health (and life) update - how appropriate that this is (in Drupal-speak) "node 1000", aka. the 1000th post on this site! December just had some surprises in store for us, and I got a bit sidetracked and wanted to get this one done first.

You may not have noticed but over the past couple years, even though I've continued to write posts about health and chronic illness, most of them haven't been particularly specific to what's actually been going on with me. I've written a few posts about my throat issues and adrenal fatigue, but otherwise I've been sticking to more general conversations about the ins and outs of living with chronic illness. I wish I could tell you that this was simply because of my commitment to speaking out about chronic illness, but that would be leaving out a significant portion of the truth. The truth is harder to talk about and more complex. 

My desire to keep personal details hush hush has unfortunately really cramped my ability to write about many topics that I have a deep desire to write about. Specific health issues, work plans, personal/family relationship stuff... I've been thinking long and hard about this, and have waffled back and forth several times about it, and have finally decided that it's time I just have out with it all so I can get back to really talking about all the things I want to here.

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Now, where to begin... Maybe a recap.

This post is part 3 in a 3-part series on my quest for a calmer mind. Part 1 on social media is here, and part 2 on healing and boundaries is here.

droplets on lily leaves

Before I dive into the next part of my quest for a calmer mind series, two other things to report from November. First, an update on how the month-long social media fast went! In short, it was glorious. It was far, far easier than the first time I did this back in the spring, but it also felt a lot more positive all around. The impact of the fast was more significant, I had hardly any withdrawal pangs (especially compared to the fast I did in the spring), and I found I adapted easily to not having it in my life.

Bruno decided to join me, and it led to a pretty interesting month for both of us - we both did a bit more reading than usual, worked on our personal projects more, and spent more "quality time" together, just hanging out, cooking, and yes...I'll admit we may have watched a little extra Netflix. I certainly lost my compulsion to pick up and check my phone all the time, and it didn't actually lead to much sense of increased social isolation. Between the increased connection with Bruno, and actually spending more time either writing (mostly via email or text message) back and forth with friends, and occasionally socializing in person, I actually felt very connected. Though the number of people I interacted with may have dropped, the actual quality of the interactions was stronger.

Finally, a quick note on one of the things Bruno and I did during the last month. He built me a virtual bookshelf here on my site, and I filled it with my favourite books on life, health, and creativity! I'll be adding more as I come across books that I fall in love with and want to recommend, but if you're looking for something to read, go have a look!

This post is Part 2 in a 3-part series on my quest for a calmer mind. Part 1 on social media is here, and part 3 on meditation and mindfulness is here.

Before I get to the topic of today, I'm happy to report the first half of my Facebook and Twitter fast has gone well! I've certainly had a few little pangs of withdrawal, but overall, it's been having the desired effect: fewer racing thoughts, less compulsive social media checking, less time lost to the scrolly-scroll.

bee in purple flowers

What have I been doing with my extra time? I've been spending it on writing, reading, catching up on backing up photos from the summer, drawing, mending clothes and sewing, and of course, there may have been some Netflix watching too. (I broke down and started watching Gilmore Girls last week - uh oh!) And of course, hanging out with my sweetie!

I've also been feeling generally awful since mid-summer, and have been having a very hard time healthwise lately, so all that stuff that sounds like "doing" is really very much in the slow lane and making up a small part of my days. I've been mostly resting and trying to listen to what my body needs right now, as well as continuing to work through medical appointments and research, and following up on referrals and tests I need to schedule, etc. Life in the sick lane.

This post is Part 1 in a 3-part series on my quest for a calmer mind. Part 2 on healing and boundaries is here, and part 3 on meditation and mindfulness is here.

I've lived with anxiety problems since I was a teenager. It took me years to figure out that's what was going on finally seek help for it, and even longer to fully understand why it was happening. It's only in the last two years, particularly the past year, that I've finally gotten a real handle on it and learned what it feels like not to be spinning around inside my head at a dizzying speed, day in and day out. This means approximately half of my life was spent in a haze of uncontrollable thoughts and anxiety. In my quest for a calmer mind, I've discovered several changes that have helped, and one of them is modifying how I use social media.

Train ride from Vancouver to Seattle

This spring, I took a month off from Facebook. Now for those who might not know, I use Facebook a LOT. I've got family and friends I want to keep in touch with spread around the world, and because of my health problems I rarely even see local friends in person. I'm a recluse, and these days Facebook is my main connection to the world. I also use a multitude of other social media, read blogs and news online, write online, etc. but Facebook is the BIG one. I can spend a lot of time on there, and it's not all well-used time. Much of it is what a friend of mine recently termed "scrolly-scroll", ie. where you find yourself zoned out and endlessly scrolling down the page.

In the spring, I did a Facebook fast. But as much as my Twitter usage has declined since back when I was working in tech, it easily substitutes my usual scrolly-scroll of choice. Nothing else sucks me in like those two platforms. YES, they are an effective way to connect and engage. YES, they are a convenient way to keep up to date on things. There are tons of positive things about them! But they change the way we live our lives, and not always in a good way. I know they change me. And over the last year or so, I've developed the distinct sense that they change how my brain functions when I use them too much.

A funny thing happened yesterday. After I wrote the post about how much I was struggling with answering the call, I posted it to a Facebook group of people who've come together around an online workshop we all took recently - Lisa Congdon's "Become a Working Artist". The first person to respond recommended I read The Artist's Way - the proverbial bible of how to be an artist, as they had been working through it and finding it useful.

Funny thing is I've owned a copy for at least a few years, and though I think I've cracked it open a couple times, I never made it past the intro. Alas, I've often found that when the time is right, the book finally resonates, so I went and pulled it off of my shelf upstairs. Then I sat down, and pressed on through the preamble, and both Introductions (I have the 10th Anniversary edition, so there's an intro before the intro) in full. All the way into the first chapter. 

What do you know - the time was right. From page 5:

Working with this process, I see a certain amount of defiance and giddiness in the first few weeks. This entry stage is followed closely by explosive anger in the course's midsection. The anger is followed by grief, then alternating waves of resistance and hope...

This choppy growth phase is followed by a strong urge to abandon the process and return to life as we know it.

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

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Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

Limits. We don't like them. We don't want to be told by anyone - not even ourselves - what we can or can't do. That each of us will eventually hit a wall at some point.

While working on my previous post on illness and beauty/body image, I had several conversations with different friends, and one of the topics that people kept really honing in on was denial. An email exchange with a friend turned into a long rant on my part, and I thought it was worth sharing, so I've fleshed it out into this post - I feel like it's a very important awareness to develop.

loss-final
~ Let your loss set you free Heartgirl by Ariane K ~

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