Chronic pain

This is a post I've been meaning to write for so long, and putting off until I could fully do it justice, but I'm realizing that maybe it's better if I just actually publish it rather than keep waiting until it's perfect. I don't have the best cognitive powers today since I'm not feeling well, but as I head into a week I know will be very physically and emotionally challenging, this is at the front of my mind and I wanted to get it out there. 

This is very much written about hetero/cis couples and might not fit with the dynamic in relationships that don't fit that label. Or maybe they might. I'm writing about my own experience and some that I've observed, and will be using that language, but I would love to hear from people who have stories that do or don't fit with that in comments!

Hi friends, long time no write!

Let's face it, I'm woefully behind on blog posts. This is for two reasons: 1) my hands are killing me thanks to some kind of mystery arthritis that none of my doctors are too concerned about, despite its significantly affecting my ability to type, cut food, etc., funtimes always. And 2) I have such a backlog of posts going I barely know where to begin! The first I can't seem to do much about right now, but the second I can - so let's get to it!

Firstly, that 4th post in my "A calmer mind" series (that is so long ago you've all forgotten about it by now), well...that isn't going to happen. Moving on! Secondly, it's long past time I pull together the results of healthcare experiences survey. That's what I'm gonna do right now so I can share it with you, and move on to hopefully posting some more frequent but shorter (and thus hand-friendly!) blog posts again. 

Thank you so much to everyone who completed the survey. I was amazed at the response it got, and was surprised by some of the answers and the ways they did and didn't match up with my own experiences. Please note the responses were completely anonymous and did not contain any identifying information (such as names, email, etc.), though I have my suspicions about a couple of them being friends of mine I did not ask/confirm whether they were. I also did not ask for people to submit info about their specific health conditions, as I wanted to focus more on their healthcare/practitioner experiences than their specific diagnoses.

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.

Mini Iris

It's been a really bizarre few months here, not just because of the freakishly early spring we're experiencing in Vancouver, while the rest of the country is under a snowbank. They've kind of passed in a blur. The family emergency in December and January was really stressful and made me brutally sick, but I'm finally starting to get back to closer to whatever passes for stable these days. It also led to me reconnecting with some family members I hadn't been in touch with in a long time, including one of my parents. Some positive things have come out of it all, but it's been kind of up and down and overwhelming. It's a lot to get used to right now, and I don't really want to get ahead of myself because it's too easy to assume things will keep going in one direction or another, when it's all totally unpredictable. My feelings about so much of it are totally all over the place and far from clear...and I don't even really care to work them out at the moment.

I haven't had a lot of time or energy to give to the whole thing, as I've had to yet again completely shelve everything aside from the bare necessities so I could focus on trying to get back on my feet again. I'm behind on so many things - but they have to wait. Emails being put off, my supposedly monthly newsletter that I've had a ton of signups for but haven't sent out since before the holidays, sewing projects that have been sitting in a pile untouched, the web project/business Bruno and I have been talking about and wanting to develop, even less-essential health appointments... I'm pacing myself heavily, and they all have to wait - maybe for a long time to come.

There has recently been a lot of discussion among the politically engaged residents of Grandview Woodlands about what an improved Commercial Drive would look like. The timing of this, during the extended time for sorting out the city's long term development plan for Grandview Woodlands, is critical as it could help set the tone for the next several decades of change for The Drive.

Untitled

This conversation was sparked by a new group that formed recently, the "Commercial Drive Action Group" (who now have a Facebook group called "Commercial Drive for Everyone", which the organizer initially presented to GWAC (Grandview Woodland Area Council) meeting attendees as a group interested in making The Drive more bike-friendly. My understanding is that now the mission is broadening to generally focusing on more people (vs. car) friendly movement around the area, slightly less specific to cycling. The timing of this, during the extended time for sorting out the city's long term development plan for Grandview Woodlands, is critical as it could help set the tone for the next several decades of change for The Drive

The day has finally arrived... 

Issue 2 of Chronically Yours is finished and for sale!

It's taken me a whole year to get this issue done... I've been kind of preoccupied, ironically, dealing with my health and wellbeing! Slowly, but surely, I've been working away at it, and after a little stapling party, it's done!

This building is part of VGH, you wouldn't know how pretty it is from the outside. Sitting there, it was hard not to notice I was the youngest person for miles around who didn't actually work there. I was there to get a second opinion on my laryngeal granuloma.

Waiting for an appointment at VGH

Ok, so I keep hearing people talking about "ease" and moving towards doing what comes with more "ease". The work I was doing before was mostly things that I felt came pretty naturally to me (being organized, mediating between different stakeholders, writing emails, planning), but work didn't feel full of "ease" by any means.

Socializing didn't feel easy. Taking care of myself didn't feel easy. Even when I left my job in the spring, NOTHING felt easy.

Resting didn't feel easy, thinking about what I wanted to do with my life didn't feel easy, I felt fucking stressed and anxious all the time, in between trips and visitors all through the summer. I tried to go take art classes, and that all fell apart quickly. I did creative projects at home. I floundered. And then a couple weeks ago, it suddenly hit me. 

I'm embarking on a health pilgrimmage. More on this later...maybe. I've also been working on my first zine, Chronically Yours, about living with chronic illness, so I've been doing a lot of reading and research about coping and support for chronic illnesses and chronic pain. I've found some really wonderful resources and readings, and some of them deserve full posts but for now I wanted to take a moment to share some of my favourites with you.

R&R: Reading and relaxation

#8 on my Life to-do list: Make a zine. Check!

Chronically Yours 1

You heard me right. After wanting to make a zine since my teen years, and never getting up the guts to fully write and publish one, I've done it!

Issue #1 of Chronically Yours is up for sale in my new Etsy shop as of this morning!

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