Denomme: Showering Optional, Life Reduced to Survival Mode¶
Day 3 · 6:28:02 · Crystal Denomme · Shawn Buckley
- 🚿 Two or three days can pass before she can shower because water itself sparks unbearable flares.
- 📅 Physio taught her to separate needs from wants; she cannot plan, keep a schedule or work.
- 🛏️ Most of each day is spent sitting or in bed, constantly up and down because she cannot stay still.
Self-care and basic daily function have become nearly impossible.
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Transcript¶
Crystal Denomme · 6:28:02
Yeah.
Shawn Buckley · 6:28:02
Like the ones that kind of cup your elbows. I saw you earlier.
Crystal Denomme · 6:28:06
Yeah.
Shawn Buckley · 6:28:07
And self-care is really difficult now, isn't it?
Crystal Denomme · 6:28:11
Yeah.
Shawn Buckley · 6:28:11
So I— you told me earlier, and I can't imagine having to plan kind of your day, but you said 2 or 3 days could go by before you might even be able to shower.
Crystal Denomme · 6:28:25
Yep.
Shawn Buckley · 6:28:27
So, and part of this is just because if you're having a flare-up, like the pain is off the chart and water on your skin is going to be too painful for you.
Crystal Denomme · 6:28:39
Yeah, some days, like, when I feel like I can shower, even, uh, just the water flowing down my leg will, will trigger the flare to go right off the charts. So, um, when I first started physio, she, she told me early on, she said, you need to really separate your life into what you need to do and what you want to do. So, do you need to shower today or do you want to shower today?
Crystal Denomme · 6:29:09
Do you need to do the dishes today or do you want to do the dishes today?
Crystal Denomme · 6:29:13
So, I really have to juggle things like that. And even with the best laid plans, I might, okay, I'm going to do X, Y, Z today. Well, 10 minutes later, the pain's off the chart. I can't plan anything. I can't maintain a schedule. I can't I can't work. I can't, like, I'm basically in-house, you know, by myself. So it's, it's very difficult to do anything.
Shawn Buckley · 6:29:45
My understanding is sometimes you can't stand up to cook a meal.
Crystal Denomme · 6:29:51
Yeah, most of the time.
Shawn Buckley · 6:29:54
So you've got a limited amount of time each day you you can even be up.
Crystal Denomme · 6:29:58
Yeah.
Shawn Buckley · 6:29:59
So you spend a large part of your day sitting or in bed.
Crystal Denomme · 6:30:03
Yeah. And even at that, I'm up and down and up and down and up and down. Like, I can't stay still.
Shawn Buckley · 6:30:11
What's, what's it been like trying to access medical care?