Life with chronic illness

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'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 have SO much to update you all on, but I'm still working through how/what to tell you... But in the meantime, I've had some more pretty awful experiences lately with doctors, and it led me to wanting to hear more from all of you about your experiences. So I put together this anonymous survey, and I really hope you'll fill it in and share it with any of your friends who are chronically ill, mentally ill, or disabled.

Thanks folks!

Update: The survey is now closed, thanks to all who responded!

This guy...

IMG_8621

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.

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.

Update: despite multiple tweets and emailing Shane/CBC directly, I never got a response.

Apparently my post about the accessibility of "car-free" and transit for people with chronic illness has now become part one of a series of posts on chronic illness and urban life. I caught something interesting on the CBC the other day. Shane Foxman did a small segment covering a protest held by the Raging Grannies calling for public washrooms in the transit system. You can watch the short video segment here. At the end, he asked for feedback, so here it is.

Public Theater
Photo by Susan Sermoneta

Dear Shane,

The thing that struck me most about the segment was how you seemed to think this issue was funny, or not so much funny, but a bit of a joke. Several of the people interviewed on the issue brushed it off, saying "just hold it" or "be more prepared" or some variation of that response. That indifference was the main sentiment of the bit was baffling, and something I could only chalk up to either complete ignorance, or less offensively, lazy reporting.

Fact of the matter is that the lack of public washrooms in Vancouver, and specifically in the transit hubs and skytrain stations, is an enormous barriers to a large variety of people. The elderly, people with bowel and bladder problems, and of course children, all have varying abilities to "just hold it". It's not a joke, it's not funny - it has a severe impact on peoples' lives.

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