Chronic illness

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

My friend Stephanie summed up life with ongoing illness so well:

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

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.

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

Health is not binary. People who are chronically and/or mentally ill may indeed be "sick" (a term with a huge amount of complexity in its own right), but we are not on any given day A) sick or B) not sick. These conditions can be lifelong or last many years, going through flares and remissions. But we are not just "sick", we are people with hobbies, partners, friends, and if possible, jobs. Our illness(es) may feel all encompassing at times, but they are not us. They are only a part of us - people who are just as complex and nuanced as any. And yet, it seems at times that there are absurd standards, perceptions, and expectations about what someone who is "sick" looks like. This only exacerbates our already complicated relationships with our bodies.

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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.

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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!

Most of my usual blog readers can probably skip this post - it's an update about one of my health conditions that will probably be totally boring to most of you, but many of us who are dealing with this tricky condition have found it helpful to share our experiences. 

This is a follow up post to my initial post about LPR and laryngeal granuloma. If you want the full history, or to read the many comments and updates from other people dealing with LPR, please start there!

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

My previous post left off nearly a year ago - how time flies... 

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!

I found this book - "Are You Tired and Wired?" by Nurse Practitioner Marcelle Pick in a bookstore last winter, and little did I know how much it was going to mean to me. I'd been diagnosed with adrenal fatigue, so when I saw it I thought it might help me understand further what it is and how it works, and what else I could do to help recover from it. It ended up reading like my life story in parts, and blowing my mind as far as how long this has probably been building up. It validated so much of what I'm going through, and helped me understand how important what I've been doing is.

You may think this is irrelevant to you, but ask yourself if you or someone in your life is constantly exhausted and on edge. Can't get to sleep (or wakes up in the middle of the night or too early) despite being exhausted. Feels like total crap after exercising, even though exercise is "supposed to" make you feel more energized. Is completely reliant on caffeine or sugar to get through the day. Having extreme cravings for sugar, carbs, and/or salt. Runs like an energizer bunny until a certain point, then crashes and turns into a puddle. Feels anxious or depressed and like life is no longer manageable.

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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

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