Life with chronic illness

I was surprised how much (mostly private) feedback I got about a couple of my recent writings on friends and on health.

Almost every email, comment, private message, etc. I got about these posts was some form of this (paraphrased): "Wow, thank you for writing about this, I have totally been struggling with this so much and it's a relief to know I am not alone and/or get some info or insight about it."

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The reason this surprised me is that even now, after having this sort of experience with previous posts, I still often feel like I really am pretty alone in dealing with these things. I feel like I'm really going out on a limb by writing about them publicly. But again and again, I get these responses from people... which begs the question: Why aren't we talking about this stuff? No, this isn't a rhetorical question, I really want to know why everyone's not talking about this, out in the open!

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

This is a hard post to write. It might be a hard post to read. It might offend, it might confuse. And honestly, if it does either, I'm not really sorry at all.

I've had a couple brave friends confess to me lately that sometimes when I talk about my health (either in person or online), sometimes they don't know what to say. That they feel bad for what I'm going through and want to support me, but don't know how to do that, or what I need.

It's hard to talk to people who are chronically ill if you haven't experienced it yourself. (I won't speak for anyone with a terminal illness, as I very thankfully haven't had to go down that road myself). But it's not impossible. All you need is an open mind, and the willingness to throw away your assumptions or beliefs about what they are experiencing.

Before trying to explain what to say, I want to go through some basics on what not to say.

I guess this could be considered part two of what I needed to get caught up on writing about health-wise here. (Part one would be about the laryngeal granuloma.)

Adrenal fatigue

Have you heard of "adrenal fatigue"? There's been a lot of talk about it more recently in alternative health circles, but it's not just one of these flaky reasons to do more yoga and eat some kale. It's a real medical condition. 

[EDIT: I've posted a follow up to this here.]

[EDIT: there is now a second update here.]

[EDIT: I've just posted a final update on my LPR adventures. I'm going to lock the comments on this and the other LPR posts now, as I really want people to use the LPR Facebook Group instead of posting here (or emailing me) - you'll get much better responses and support there! ]

And now time for some health catch up...

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. 

As I mentioned, one of the things I've been focused on this summer is self-care. Health (mental and physical), habits, diet, exercise, you name it I'm working on it.

I've been reading, journaling, and experimenting with what helps me feel better - trying things that are out of my comfort zone, and even outside of my belief system. Who knew real rest - not just resting because I'm already sick and worn out - was one of these.

I realized I hadn't really learned to rest

Flowers in San Francisco

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