asthma

“some days all i do is watch the sky”

• by kerri

Some days, my day looks like this

running

But my night can look like this

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Maybe it’s because I ran around filming a video. Or inhaled a bunch of smoke all day drifting around with the breeze. Or sat around a campfire at lunch. Or maybe there’s seemingly no reason at all.

For me, the asthma monster-under-the-bed, I am lucky, doesn’t come around often. Maybe once a month, maybe less than that.  Most of the time, unless I’m really sick, it lurks from inside me slowly–waking up and not realizing my lungs are the reason why, usually wandering to the bathroom and back before laying down to realize “Hey, I’m pretty short of breath over here.”

Sometimes a couple puffs of Ventolin is all it takes for me to drift back to sleep.  Other times like the other night, I slip into some sort of autopilot while feeling a heaviness settled in my lungs: two puffs, fifteen minutes. two puffs, fifteen minutes, two puffs, fifteen minutes. Last night, it was after round three, or six hits, I fell asleep again.

The next day, still, can look like this (…okay, a little tired I guess!)

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It’s a mind game. It’s thinking I’m fine and when I’m least on my guard, the previous day somehow grabs onto me and shakes me back into it–in one of the ways I least want to be inside it.

this guilt feels so familiar, and i’m home / i will crawl / there’s things that aren’t worth giving up i know / but i won’t let this get me / i will fight . . . / you live the life you’re given with the storms outside . . ./ some days all i do is watch the sky

i think i, i could use a little break — but today was a good day.

watch the sky, something corporate

mirror mantra

progress not perfection.

• by kerri

My friend Mike started a thing called “Mirror Mantras”, where he posts a positive or motivating phrase on his bathroom mirror to keep him inspired throughout the week. Here’s mine for the week . . . “We’re standing on the ashes, with a clearer view and a new perspective.“

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health + fitness / life / wellness

intention.

• by kerri

The last six weeks was, I am sure, more than enough to make me unsettled (in a not-good way).

Last week, the seventh week, was about reclaiming ground, becoming more settled in my body, knowing things are getting better.

Saturday . . . i had this feeling arise over me. For the first time in a very long time, I felt healthy. I have clung on to that feeling for the past 30 hours. (My lungs still don’t feel right, but hey, otherwise I feel good, I can deal with the lungs. I’m blaming the rain for that).

Finally feeling healthy, though, made me realize everything I need to work on. Things I have the energy to work on. Finally.

Physical Activity.

Exercise is a thing that suffered–which is also a thing that I’ve found keeps me balanced . . . contributing to the state of emotional unbalance on top of the obvious physical unbalance.

Exercise graph

Part of this dropoff was intentional. When my hemoglobin was slipping bad, I was intentionally not exercising beyond walking to and from the bus, because I didn’t want to contribute any to the state of dropping–the reality is, I’ve been sicker than I cared to admit since March. And I was trying to be proactive and my doctor was not engaging with me on working with me on that.

The other part is that I simply could not do things. I would walk home from the bus and have to take breaks because it was too hard–my heart would pound inside me with even small amounts of moderate exertion. I would get short of breath and it wasn’t the asthma. I was a mess for a lot longer than I admitted to many people, but what else was I supposed to do? I didn’t know better that what I was feeling would become as bad as it did down the road.

This, I need to rectify.  Back to paying attention to the fitbit, and doing some TribeSports challenges to bring my focus back to where it should be.

Nutrition.

It is not so much the fact of micromanaging the micronutrients that I need to work on, it is just simply making healthier food choices. Leaning away from all of the stuff that I know I don’t feel good from or about after eating, and having all that stuff on a less frequent basis. It’s a fine line, and I know myself–and I know that I have a hard time balancing this stuff in the most basic way.

Creativity.

Writing has for as long as I can remember been my release. I started journaling and writing lyrics/poetry in the fourth grade. These things have been the sole methods of getting me through so much of the tough stuff in my life.  2013, having the theme of Make Yourself, I want to expand on that. I’ve been trying to make a more focused attempt at journaling–“and i scratched these words / into a black notebook”.

Words have always been my weapon. Music has been a second.

Visual art? Even farther, yet still something I have gravitated towards and wanted . . . but seldom wrapped my fingers around.

Friday . . . I started to transform that with a quote inspired from one of Andrew McMahon’s tattoos.

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my intention / a bullet / my body / a trigger finger / . . . and my pen is a pistola.

my secret arsenal is an infinite, ageless inkwell / it’s a fountain of youth and a patriot’s weapon of choice.

pistola, incubus

I’ll be capturing that process on deviantART.

Balance.

I’ll be honest here. It’s a paradox: when my health is at its worst, the things that keep my body and mind balanced are the first to go in the effort to simply survive. I’m realizing now that this is incredibly backwards, yet . . . it feels incredibly necessary at the time.

when dark clouds cover the sky / like there’s no hope, You are my light / You tell me to live. / when i’m all by myself / and i’m scared about my health / You tell me to live. / and when You heal my broken wings / yes, You heal my everything / You tell me to live.

You tell me to live, the rocket summer

Be intentional.

This week . . . I am rolling back onto Operation Intention. Getting back to making better choices . . . for all of me. Body, mind and heart.

Recovery.

life / mirror mantra / music

“i don’t wanna waste another minute here”

• by kerri

I want things to be looking up.

All Time Low . . . is helping me do that.

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I found Weightless on my iPod this weekend. I can’t say I hadn’t previously listened to it, but I hadn’t previously focused on it. Essentially, I then put it on repeat, because oh my God this is so much my life right now.

manage me / i’m a mess. / turn a page / i’m a book / half unread / i wanna be laughed at, laughed with, just because / i wanna feel weightless, and that should be enough.

but i’m stuck in this fucking rut / waiting on a second hand pick me up / and i’m over getting older / if i could just find the time / then i would never let another day go by / i’m over getting old . . .

maybe it’s not my weekend / but it’s gonna be my year / and i’m so sick of watching while the minutes pass as i go nowhere. / and this is my reaction / to everything i fear / ’cause i’ve been going crazy / i don’t wanna waste another minute here.

make believe / that i am pressed / that every word, by design, turns a head / i wanna feel reckless / wanna live it up just because / i wanna feel weightless, ’cause that would be enough . . .

if i could just find the time / then i would never let another day go by / i’m over getting old . . .

this could be all i’ve waited for. / and this could be everything, i don’t wanna dream anymore. . .

maybe it’s not my weekend / but it’s gonna be my year / and i’ve been going crazy / i’m stuck in here . . .

weightless, all time low

guest posts / health + fitness / life

guest post! – a matter of parallel badgers

• by kerri

Following my asthma diagnosis, the world of chronic disease took on a new dimension–not only was I living it, but I was now able to resonate with others who were living it too. I’ve found through these interactions that it is only in part that the same diagnosis creates friendships–however, I also have found many, many friendships with others living with a variety of chronic diseases.

Bob is one of those friends, and he is also not the Roomba (my grandma has a Roomba named Bob. Bob fully understands this reference even if nobody else does). He’s always quick with some wit, humour and support, and is one of the many people I was blessed to encounter who is a member of the Diabetes Online Community. We’ve had many discussions about the parallels between different chronic diseases, specifically asthma and type 2 diabetes–I’m happy to have him sharing his thoughts today!

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My name is Bob. I have a blog (www.tminustwo.net) in which I share stories and perspectives from my life with Type 2 diabetes.

It’s been many months since Kerri first invited me to exchange guest posts. I started a draft at that time, but it’s just been kind of cooking on the back (WAY back) of my mental stove. There’s just been something I wanted to say, but I haven’t know quite what it was or just how to say it. (This is not completely unusual for me. I recently published a post that had been in the hopper for over two years.)

Kerri and I have often discussed the parallels between life with diabetes and life with asthma. Recently on Facebook, Kerri made a comment to me on one of those parallels. I offhandedly replied, “Yeah…if there’s a badger clamped onto your butt, it doesn’t make a huge amount of difference what species of badger it is.”

Ah-ha! THAT, my friends, is what I’ve wanted to say. No matter what kind of chronic disease a person has, it’s an enormous pain in the butt. And while chronic diseases have important differences in the nature of the impact on the folks dealing with them and what managing the condition involves, there are also many things that seem to be very common among those living with these conditions.

For the five years since my diagnosis, I have been an active participant in one online diabetes forum or another. In that time, I have read the stories of many people touched by the various kinds of diabetes. I’ve also, from time to time, heard or read the stories of people with other conditions. And, as Kerri says, there are many parallels.

See if you’ve found yourself saying something like the following:

  • “Because I look normal, people don’t realize that sometimes I’m really sick.”
  • “I work hard to take care of myself, but there are still bad days. It’s so frustrating!”
  • “People say the stupidest things to me about my condition. Sometimes they act like they know more about managing my condition than I do. Even though they usually mean well, it’s annoying and hurtful.”
  • “Dealing with this day after day, year after year, is so wearying and so dispiriting.”
  • “Everybody wants to tell me about their relative that had my condition, and it’s usually someone whose outcomes were really bad.”
  • “My sister-in-law is always sending me articles about ‘cures’ for my condition that are totally whacko, and my neighbor in this marketing scheme is convinced that all I need to do is buy her products!”
  • “Even some of my family members just don’t understand what this is like. Either they don’t get that I’m sick at all or they treat me like I can’t do anything.”

Any of that sound familiar? If you or someone you love has a chronic condition, I’m guessing that some of it does.

For many people living with a chronic condition, participating in social media with those who “get it” can be very helpful. People with diabetes find that the diffuse and informal entity known as the Diabetes Online Community provides a way to exchange information (“Where do I wear my insulin pump with my wedding dress?”) and viewpoints (“I really disagree with this article!”). More importantly, though, it gives PWDs (People With Diabetes) the opportunity to interact with other people who really “get it” and to receive the powerful reassurance that they are not alone.

I don’t know to what extent people with asthma have created similar resources, though I understand that online communities are being formed by people with many different conditions.

To me, this is a wonderful thing and well worth doing. After all, we need all the help we can get – we have badgers clamped onto our butts.