Dysautonomia International is hosting their STEPtember challenge to raise money for POTS Research.
You can walk as much or as little as you want. You don’t even have to walk at all.
You can (1) support me as I start hobbling around my neighborhood a little bit more in the spirit of POTS research and POTS conditioning, (2) you can join my fundraising team, shan squad, and/or (3) you can buy a team shan squad shirt!
Life is strange and confusing and I have a lot to write about but I also have writer’s block—
But I wanted to say hi,
To let you know I’m here, I’m healthy, I’m taken care of,
That I hope you are, too,
and I hope you join in!
What I’m eating, what I’m thinking, what I’m reading, what I’m buying, and more.
Continue Reading →
Have you tried exercising? (Yes, but—)
Have you tried meditation? (Yeah, once or—)
Have you tried hydrotherapy? (I’m open to it—)
Have you tried going vegan? (I don’t know if—)
Have you tried going gluten free? (I did-—)
Have you tried keto? (Well it might—)
Have you tried the Mediterranean diet? (Is that the one—)
Have you tried FODMAP? (Once or-—)
Have you tried intermittent fasting? (That doesn’t work for—)
Have you tried yoga? (Yeah once—)
Have you tried hot yoga? (That’s unhealthy for—)
Have you tried yoga at my friend’s studio? (Oh who—)
Have you tried acupuncture? (That’s not—)
Have you tried a chiropractor? (My insurance—)
Have you tried massage therapy? (I’m not—)
Have you tried Ayurvedic medicine? (What’s—)
Have you tried reflexology? (Is that—)
Have you tried reiki? (Yeah once—)
Have you tried positive thinking? (Of course—)
Have you tried going on a retreat? (That’s too ex—)
Have you tried art therapy? (I’d like—)
Have you tried getting getting more sleep? (I’d love to—)
Have you tried getting less sleep? (Well—)
Have you tried polyphasic sleep? (What is—)
Have you tried essential oils? (I’m not—)
Have you tried celery juice? (The guy who—)
Have you tried the drinks Stacy at church sells? (I don’t—)
Have you tried vitamins? (Yeah I—)
Have you tried B12 injections? (Um—)
Have you tried St John’s Wort? (That’s not sa—)
Have you tried turmeric? (Is that a—)
Have you tried raw honey? (Where do—)
Have you tried cayenne pepper? (In my—)
Have you tried biofeedback? (One time—)
Have you tried hypnosis? (I don’t—)
Have you tried music therapy? (Where—)
Have you tried red light therapy? (What’s—)
Have you tried blue light therapy? (Isn’t—)
Have you tried green light therapy? (Wait—)
Have you tried infrared sauna? (How does—)
Have you tried colloidal silver? (I heard that’s—)
Have you tried cold therapy? (I don’t—)
Have you tried a juice cleanse? (That’s—)
Have you tried bone broth? (I don’t—)
Have you tried coffee enemas? (NO—)
Have you tried seeing a psychic? (Um—)
Have you tried burning sage? (Well—)
Have you tried spending more time in nature? (Well—)
Have you tried prayer? (Of course—)
Have you tried fasting? (Yes—)
Have you tried reading the scriptures? (Ye—)
Have you tried going to the temple? (I’d—)
Have you tried praying more? (—)
Have you tried praying harder? (—)
Have you tried praying better? (—)
Have you tried going off of your medications? (That’s a bad—)
Have you tried seeing new doctors? (I like my—)
Have you tried listening to anyone else for once? (What?!)
And all I’m left with is this:
Will my efforts ever be enough for those outside my illness?
When I was a little girl, I was afraid of everything, most notably thunderstorms. Every time storms would roll in, I would get a very familiar stomach ache that would turn me into a shaking mess. I would obsessively watch the sky, studying the formations of the clouds, watching out for lightning, counting the seconds between rumbles of thunder.
In my family’s big, safe, Virginia home, I would round together the things that made me feel safe—my blankets, my stuffed animals—and was ready to evacuate to the basement at any given time. I was born in the Chicago suburbs and spent ages 3 to 5 in Minnesota—I was in several near-tornados as a little girl—and I was always prepared for the worst. Even if I was indoors, even if I was in a basement without windows—I was vulnerable. My family was vulnerable. I had to protect us from danger.
I watched The Weather Channel all the time, learning everything there was to know about my enemy—but even armed with all of this knowledge—every time the sky turned the least bit gray, I had that same stomach ache. That anxiety. That fear.
This was the beginning of my life with chronic anxiety.
The terror surrounding thunderstorms didn’t fade away until I was in high school. But my fear of thunderstorms was replaced quickly by the anxieties of everyday life of a teenager, and now adult life.
What if I fail this exam?
What if I don’t get into college?
Do my friends hate me?
Am I smart enough for this?
Do my parents like Mike more than me?
Am I ever going to learn how to conquer this?
Am I always going to feel this way?
Am I ever going to get over this?
Is this my forever?
Those meshed together with my onslaught of depression, with my undiagnosed POTS, with being a teenager, with the reality of being a normal human being, and I collapsed. Regularly.
I kept wishing I would hit rock bottom, so that at least everything would be upwards from there, but every time I thought I hit my lowest—a few months later, I stumbled upon a new challenge.
It never kept me from rebuilding though.
That’s what we did in therapy: we sat in the pain, we mourned, we made a game plan, and we rebuilt. We always rebuilt. Even if we knew another crash would eventually come.
When I went into remission from depression and anxiety after having transcranial magnetic stimulation, so many anxieties followed (and still follow) me like a ghost.
What if your meds stop working?
What if your therapist quits?
What if TMS doesn’t work?
What if you relapse?
Relapse is a word that thunders in my head and shakes me to the core, reducing me to the 8-year-old who ran quaking from summer storms.
Relapse could very well happen.
That’s the reality of anxiety, of depression, of any health matter.
But the light that follows is this:
In my teens and early 20s, I was so anxious I couldn’t even drive a car. Now, I’m sad because I miss driving.
For a while, I had so many anxiety attacks that I couldn’t hold down a job. Now, I have one with coworkers I adore.
When my friends graduated, I hated myself for not finishing college. Now, it’d be nice to have a degree, but I could dance every day because I’m not weighed down by student loans.
In 2017 I was so depressed that the only good part of my day was watching a three hour block of the TV show ER. Now, the best part of my day is actually talking to people.
A few years ago I sometimes needed to see my therapist twice a week. Now, I go 2-3 weeks without seeing her, and I feel great.
I could relapse tomorrow. It would be devastating. But every day I’m working on strengthening myself so that if relapse ever happens, I can find my way out again, and hopefully help someone out of their depths as well.
I think a lot about what the 8-year-old version of myself would think of who I am today.
Would she be proud? Would she be confused? Would she be angry, because 8-year-old Shannon expected Grown Up Shannon to have a career centered around pandas, and anything less than that is a disappointment?
I’d like to think that my younger self would breathe such a sigh of relief—because now, I like keeping my bedroom window open, especially when it rains, so I can listen to the thunder, watch the lightning, and I’m not scared of it.
And maybe, in a few years, the even older version of myself (oh God… aging) won’t have the same fears I have today.
Maybe relapse will be just like thunderstorms, and it will just be a concept that isn’t so scary anymore.
How are you?
Like, really. How are you?
I don’t really know how I am.
I was furloughed at work at the end of March—they’re hoping to bring us back in June—so I have… so much time on my hands.
I wrote a post for Dysautonomia International about ways to stay engaged while quarantined, and I suggested to people that they take Ivy League courses online or and learn new languages and do puzzles and start crafting…
I haven’t done any of these things.
I did laundry the other day. I also did some dishes. My roommate must want to wring my neck because I suck at dishes. She’s so on top of it, and I’m much more a believer in letting things soak for like 24 hours… even if they don’t need it.
I’ve been watching a lot of internet videos.
I remembered an old crush I had on a CollegeHumor writer, so my brain told me, “hey, you should watch… every CollegeHumor video, maybe, ever.”
Challenge accepted, part of my brain that encourages me to make questionable decisions. (You should definitely watch this one about working from home though, and maybe this one too…)
The same part of my brain has been telling me to watch lots of episodes of Survivor on Hulu. I wasn’t allowed to watch Survivor growing up. It wasn’t a moral or ethical thing my parents had strong feelings about—my mom just thought the show was stupid and banned it.
I miss my mom and dad.
Emily and Erin suggested that I move back in with my parents for a little while so that I could quarantine with them, because seeing them is important to me.
That’d be great—except the last two times I slept there since I moved out, I threw my back out on the guest bed. Once, over Christmas where I was in pain for a few days, and the other in February, where I ended up with sciatica, and I thoroughly thought I was going to die. I looked into having the lower half of my body or spine removed but apparently that’s “impossible” and would “kill me” and I would only need the sciatic nerve removed, but even that is not really feasible. Whatever, friend in med school, I feel like you’re just not cut throat enough for my lifestyle.
My POTS is doing horribly.
Turns out, having a job was great for POTS. It gave me the structure I needed. I was on a great sleep schedule. I drank lots of water. I would get up and walk around the office… especially when I wanted to annoy my coworkers or ask my boss, “am I screwing this up?” (a daily occurrence.)
I’m afraid of leaving my apartment. An ambulance was parked outside of my building on Friday night for a few hours, and all I could think was, “Yep. Someone in this building has the virus.” I tried to argue with myself that maybe they’re like me, and they have a chronic illness and just need fluids or something. Or maybe they had one of those surprise toilet babies because they didn’t know they were pregnant, or maybe they just cut their finger off cooking (because apparently everyone is making sourdough and focaccia and weird coffee lattes and is slicing their appendages off) and didn’t want to risk a trip to the ER—
I don’t know what the people in this complex do and I don’t know if they’re licking the handrails when they walk up and down the stairs (not that I touch handrails anymore) and what if I walk into a spider web that has droplets of coronavirus in it or something like that? Is that a thing? Are you now paranoid that it’s a thing? Is this the equivalent of shouting “fire!” in a crowded movie theater? Is this a Shane Dawson conspiracy theory video?
All of this… is so much.
And I vacillate. Some days I’m great, it’s like vacation, it’s like the much needed “me” time I’ve been longing for. And other nights, I’m up until 5 in the morning because I’m afraid to fall asleep, as though sleep will cause time to start spinning out of control.
Every night I pray to God that my parents and brother stay safe and healthy. I don’t care what happens to me, but please, Lord, keep Mom, Dad, and Mike safe because if I don’t have them, I’ll fade away into nothing at all.
I worry about my chronically ill friends.
We are so well trained in how to handle life in isolation, in missing out on milestones and things we looked forward to. In being denied life’s most basic events, like grocery shopping or going to work or getting dinner with friends.
But now we have to comfort the rest of the world and teach them how to do this. We have to listen to the complaints about how hard this is. And yes, it is hard. It’s so hard. There’s nothing about this that’s easy. But we’ve been trying to tell you about life in quarantine for a while.
I don’t know what the world will look like when this is over. And for some chronically ill friends, there is no “over.”
I don’t know what my personal normal will look like. I don’t know if I want to know yet.
So I’ll keep going with this strangeness.
And in the meantime,
Tell me, how are you?