Social Distancing’s Unexpected Effect On Me As Someone With Chronic Illnesses

A quick note out of concern that this will appear a bit too “light” or gloss over the horror that is the current pandemic: this post is an honest look at a simple moment, a glimpse into an unexpected positive effect of an awful situation. COVID-19 has affected people in a myriad of ways, and can have a myriad of effects on even one individual. This is the story of just one of the effects it has had on me. It is in no way meant to minimize what is going on, but instead to magnify what has too long been minimized: the adverse effects chronic illnesses have on mental wellbeing and quality of life.

An electric guitar blares from the neighbor’s garage. It is early afternoon on a Saturday, and the guitar often blares, so this in itself is not unusual. What is unusual is my accompanying wonder if, were we not all self-quarantining and social distancing, the guitar might not have blared at this particular moment. What is unusual is my awareness that it is only a guitar blaring, and not a full band, as can often be heard. What is unusual is my smile as I wonder if this is a solo creative endeavor brought to fruition by being homebound without the option of inviting a friend over. What is unusual is the strange sense of connectedness I feel from everyone else suddenly feeling as disconnected as I have felt for years because of my chronic illnesses. What is unusual is my sudden motivation to restart at-home projects I had put aside, large or small, because they are suddenly what everyone else is doing, and therefore suddenly seem useful, worthwhile, shareable.

I’ve also been checking social media a good deal more since all of this started. Usually, I try to keep away, knowing the travel pictures, college updates, and group selfies of people all out living their lives will hurt too deeply right now as I struggle to adjust to the stagnancy of life with chronic illnesses. But for the first time ever, everyone’s lives are on hold. For the first time ever, my feed is filled not with travel pictures, but the disappointment of cancelled trips and events. Filled with people trying to figure out what they can do when they can do nothing. With people realizing that what seems like a vacation for one day absolutely does not once it is mandatory and extended indefinitely. With people finding out what happens when they are stuck all alone, or with only the same people every minute of the day for days on end. For the first time ever, I am getting to see this not just through the eyes of the chronically ill who have already gone through the grieving process, learned how to cope, and have moved on to posting messages of hope online that they themselves are still trying to believe.

For the first time ever, we are getting to see what happens when these challenges hit the masses. And guess what? They hit hard. Reactions range from depressed, to antsy, to lonely, to stir-crazy, to hopeful, to fearful, to irritable, to all of the above and more. And that’s with the knowledge that this is temporary; and — for those not infected — minus chronic pain, sickness, and fatigue. And for the first time ever, I am getting to truly see how abnormal this situation is. For them.

Only now can I see in crispest clarity that, yes, cancelled plans and indefinite days at home absolutely take their toll. Only now do I realize how I have been surrounded with the voices of those who have already learned to cope with this, and the voices of doctors who smile and nod as I once again list out my symptoms and try not to slip into despair, then say there’s little or nothing they can do and that I should just continue living like this, as if that is easy. Only now do I understand how valuable it is to also hear the voices of those who have not learned to cope. Who are just at the beginning of this process. To understand that of course I am depressed. Of course I am struggling. Because this is hard.

For the first time ever, my situation feels at least somewhat normal. And so, as I sit alone on my porch, reading a book and listening to the lone guitar ring out — a reminder that, for right now, we are all alone — I suddenly feel less so.

Photo by Joshua Rawson-Harris on Unsplash

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New Year, Old Beginnings

How many new beginnings is a person allotted? One for each new year? New month? New day?

A good story has a beginning, middle, and end, not infinite beginnings. I intend mine to be a good story. I shall not endlessly rewrite the first chapter, seeking its perfection. I shall progress and grow, regress and change.

The new year hands us a blank page, inviting us, daring us, to write our future; and we reach out with eager, childlike hands and giddy minds racing with ideas of all the scribbles we will put on it. But it need not be a new story, merely, greatly, a new chapter. The Old You may be permitted to live in the pages pressed against the new, her ink occasionally bleeding through to touch and taint the crisp new pages.

Old experiences and effigies of character need not be thrown aside to make way for the new. They may be carried along, regarded with equal importance, for their assemblage acts as a pedestal, hoisting you ever higher.

I will hope for this chapter to be a better one, but will not regard it as useless if it is worse.

After many long, dull chapters, I have grown disinterested in my own story. I long to restart, with a fresh page. But a fresh page does not bring with it a fresh heroine. Therefore, I must simply make this one grow.

Simply.

How does one rise to meet a challenge, when the challenge shrinks horizons rather than expanding them? This is my question for this new chapter. If I can find the answer, I am sure I will find with it a greater appreciation for my heroine.

Updates On Remodeling Life For Chronic Illness

Where have I been? Well, certainly not on beautiful Italian mountaintops where this picture was taken (although at one point I was). It just seemed like a nice blog post picture. And it was one of the first to pop up when I was going through my pictures to make this. And I like looking like I actually have a life.

For a short while, I was keeping my blog updated. I purchased a domain, thinking perhaps I could transform what was once a place to dump ideas that I liked every few months into a Blog. Like, a Blogger Blog. With readers and money and everything. But, as suddenly as my ability to write had returned, it disappeared again. It was like my brain was on a permanent fog delay. It still is, much of the time.

Sitting at my laptop to write simply began to hurt too much — as did reading, playing instruments, and many other things. At this point, after several years of testing for Lyme and other possible sources of the pain, fatigue, and other symptoms, the only fixed diagnosis I had received was Fibromyalgia (diagnosed rather quickly and dismissively by a rheumatologist, who then offered no guidance other than to tell me to look it up on the internet). So I saw a chiropractor regularly, tried massage therapy, and new pain meds every few months, and just… waited. When my neck pain gets really bad, it radiates into my forehead and my entire skull aches as if someone has shot an invisible arrow through it. This was my norm for a while.

Every week I would go to my chiropractor, and every week my neck seemed to be getting harder and harder to adjust. I got the feeling he was starting to give up, and I don’t blame him — In his words, it was “like trying to adjust a plank of wood.” Tired of going home with my neck and head still hurting and only being told to use heat and ice to treat it, I asked if there was anything else I could do for the pain. An MRI was ordered.

Initially, I had a conflict and couldn’t make the appointment, but after that I just kept rescheduling it. I was tired of doing test after test just for them to come back normal when clearly something was wrong.

The doctor handling my medications smiled knowingly when I told him about the MRI. “You won’t find anything on that,” he said confidently and dismissively. I had two thoughts in response to this: 1.) You’re a psychologist. You don’t have enough information to tell me that. 2.) Maybe he’s right. Maybe it’ll just be another waste of time and money. Maybe I shouldn’t go through with it.

Luckily, my therapist and I decided my first thought was more logical. And, luckily, I’m extremely contrary and his comment had pissed me off just enough to go through with it, if only to prove him wrong if something was there.

And something was.

That MRI led to my first not-invisible diagnosis in a long time: Klippel Feil Syndrome. Basically, two of the vertebrae in my neck are fused and my neck is much straighter than it’s supposed to be and it’s real painful. I was extremely happy to finally have a problem I could see. A test that didn’t come back normal, that didn’t leave doctors to come up with a cause based on information that wasn’t there.

This time, someone could point to the scans and clearly, without a doubt, tell me what and where the problem was. Also, I got the satisfaction of reporting the significant results to my dismissive doctor.

With Klippel Feil, which is a congenital condition, you are not supposed to do contact sports, or anything where you could hit or jar your spine and neck — i.e., everything I did as a child. My mom, looking back on my years of horseback riding falls and doing tricks with friends on the trampoline, was now very concerned there might be neurological damage and very glad I was still alive. No one in my town knew what to do with this relatively rare diagnosis, so off to Johns Hopkins I went to see a specialist.

As of now, I’ve only had one appointment there. Though I don’t know much more about my condition at this point, I’m giving Hopkins a paragraph just because it turned out to be the first time in a long time that I did not come out of a medical office crying and extremely depressed. The people at Hopkins seemed genuinely happy to see their patients and assess their problems. There were tons of people ready to help you at every turn, and they did so without any awkward and uncomfortable jokes. There was also hand sanitizer everywhere, which is awesome if you have germ-related OCD like I do. But most importantly, I was not sent out with whatever diagnosis would let the doctor off earliest and with the least work, and I felt respected and believed.

In the time I haven’t been in doctor’s offices, I’ve been mostly… sitting. I feel incredibly spacey and detached most of the time, and my energy, both physical and mental, has been primarily nonexistent.

You know the alert that pops up on your phone when you hit 20% and asks if you want to switch to low power mode? Well, 20% has been my maximum for a while now, and it constantly feels like I’m on low power mode. And the alert you get when you hit 10% just telling you to plug your phone in or it’s gonna die? I’ve been at that level a lot, too.

For me, the phone alerts analogy translates in real life to blurry vision, shaky hands and legs, worse motor skills, and slower reaction time, all indicators that I’m about to hit 0% and should get home asap. “Charging” pretty much involves lying down until my muscles don’t feel like rocks anymore and my brain doesn’t feel full of cotton.

So yeah, it’s been an empty, boring stretch of waiting to feel better again. But no one knows when, or if, that will be, and a quiet day in watching movies lost its charm months ago when it became the norm instead of a treat. So, instead of waiting for myself to be able to re-adapt to normal life, I’ve been working on redefining normal life for myself. (And not being super sad about it — cause lately, I haven’t been handling this “I have a chronic illness and can’t do anything I used to do” thing as well as I had been.) There are still useful things I can do from the couch if I work it right.

I bought an iPad, because my old MacBook Pro was heavy and overheated a lot, requiring an additional fan that made it even heavier, and it was starting to seriously hurt to use. I’d been wondering if the mobility and lightness of a tablet could be the replacement I needed, and so far it seems to be working well. As I write this, I have the screen propped up on a table in front of me and a Bluetooth keyboard on a pillow in my lap. There’s no weight, and I can adjust each thing individually. So step one, Replacing My Laptop With Something I Can Actually Use, is complete.

Believe it or not, just holding up a book has started to hurt, too — a problem that’s also solved with the iPad. I think I like it better than a Kindle, because it’s more the size of an open book, and has cute page flip animations that makes it feel even closer to a real book. I also have Irlen syndrome, so I use color overlays to read. Constantly moving them from page to page was annoying, and trying to keep them flat against the curved page hurt, so being able to prop up the tablet and overlay and leave it there is incredibly helpful.

Another thing I’ve been doing is making video health logs, because for a while I was literally too tired to write. They’re handy because while I may not always have a notebook on me, my phone’s usually there in my bag or pocket when something comes up that I want to log (e.g. sudden shakiness, an anxiety attack).

Other than that, I’ve mostly been reading, watching movies, and playing Hogwarts Mystery — the last of which being way more fun to talk about than illness, so tell me what you think of it, what house you’re in, and how far you are in the game!

I found the Canva app and realized I could make nice blog headers really quickly, so that’s honestly the only motivation I had to write this post, and even that fluctuated. With any luck, I’ll accidentally make a graphic I like and want to write a post to go with it again sometime soon.

5 Quotes + Tips That Get Me Through Bad Days

 I am the one thing in life I can control.

— Hamilton (Musical)

The following line is equally good — “I am inimitable / I am an original” — but this is the one I find most helpful. You will never be able to control other people’s actions. You will never be able to control what people think about you.  There is only one thing in this world that you have complete control over, and that is you. Your thoughts, your actions, what you put into this world, that’s all you need to worry about. Life gets quite a bit lighter when you accept and let go of the things you can’t control.

Motion creates emotion.

— Tony Robbins

Usually, if you have depression or something similar, everyone tells you to “go outside, get exercise!” with the goal in mind being to rid you of your gloomy depressive haze and make you happy. This quote, however, suggests motion as a means of creating emotion. Any emotion. Because whether we’re angry or happy or anything else, emotion is what gives us the drive to do things. And, often, if you’ve just been lying in bed all day, you don’t currently have a huge breadth of emotions.

The motion doesn’t have to be big, anything to give you a slight change of scene or viewpoint. Depending on the day, it can just be getting out of bed. Judge for yourself what you’re up for. I recommend putting on music you can’t not dance to (which is early 2010s pop for me. Happy nostalgia can be very helpful nostalgia!), but other, less exerting suggestions include: reading a book, taking a walk, sitting outside, calling a friend, texting a friend dumb memes that you know will make you both laugh, and putting on a new outfit and showering if you haven’t already.

Have courage and be kind.

— Cinderella (2015)

This quote has honestly become my life mantra. As long as I have it, I can get through anything, because if my only goal is to be as kind as I can no matter what (disclaimer within reason obviously blah blah blah if someone is stabbing you you don’t need to be nice to them), I no longer have anything to worry about.

Having a goal that’s aimed outwards — trying to make other people feel better rather than trying to make yourself feel better — can take a lot of pressure off, and be really helpful in getting you outside of yourself for a little. When I had auditions and rehearsals that I was really nervous about, my therapist suggested thinking about the nerves of the other people auditioning and rehearsing instead of my own. When we decided that my goal would be to make the people around me feel more comfortable and not worry so much about myself, although I was still scared, it didn’t seem to matter as much anymore. Trying to hide or calm anxiety is an extremely difficult and scary task; complimenting someone is not. So that was my lens: find the good in other people and bring it to their attention. Many times, approaching people in order to give them a compliment was still scary for me, but a smile often suffices when words can’t quite make it out. A quick, genuine smile at someone who looks scared lets them know that you’re on their side, and can go quite a long way.

Living by this quote is also helpful in taking down the stress of arguments and other unpleasant situations. If I feel that someone has been rude to me, but I can recount everything I did as being only kind, I can at least be confident that I did nothing to provoke it. And, referring back to quote one, that means that I can let go of it without worrying about it!

When a flower doesn’t bloom you fix the environment in which it grows, not the flower.

— Alexander den Heijer

Pretty self-explanatory! ♡

Imma keep running ’cause a winner don’t quit on themselves.

— Beyoncé, “Freedom”

And finally, Queen Bey. This lyric changed how I thought about myself, and about healing myself. I have the potential to do incredible things, to have so many new experiences that change and shape who I am. When I quit on myself, I quit on that future me that would have been. I quit on everything I would have done, and everyone who would have been effected by future me’s existence.

My existence is to be prized and valued, but prizes don’t come without hard work, dedication, and courage. So Imma keep running ’cause a winner don’t quit on themselves. ♡

 

Photo by hannah grace on Unsplash

 

Help, I’ve Relapsed And I Can’t Get Up!

I had an anxiety attack last night.  A big, long anxiety attack that arrived the moment I thought someone was upset with me, and stayed long after they apologized, everything was talked over, and it was all resolved.  It’s still hanging on a bit this morning, actually, like a sloth that’s latched its claws around my shoulders and is only now making its way, ever so slowly, back down.  The only difference is that I would absolutely love to have a real sloth around my shoulders.

One of the most terrifying moments in the world (okay, exaggeration) is when you run out of tissues, but you’re still crying uncontrollably.  Thus was the case last night.  As the box grew closer and closer to empty, with each tissue I told myself, “No more tears.  One more tissue, be sad and get it out, and then no more tears.”  But my tears ignored me.  They ignored me for hours, and they went on ignoring me all the way into this morning.

I have always been quick to panic or cry, most often both, in certain situations.  But a few months ago, calming myself back down was amongst my semi-mastered set of skills.  Last night it was not, and it left me severely disappointed and scared.  Did I somehow just lose over a year of work with my therapist? How hard would it be to get it back?  These were not questions my panicked brain felt equipped to handle, but it would be a week until I saw my therapist again, and so it worked to try and at least patch a band-aid on until I saw her.

Healing is not linear.  I know that.  But, man, some of the drops hurt.  You don’t just roll down a nice, soft hill of daisies, brush yourself off, and then start walking back up.  Sometimes you walk straight off a cliff you didn’t know was there and fall on your face.  I knew there would be drops, but no one said that the drops would be like running around a canyon trying to find a way back out, while also trying to fix the broken nose you got when you landed here.

Right now I’m still in that canyon.  I haven’t found a way back up.  But I also know that a canyon is not the worst place to be stuck in.  I know that, eventually, I’ll find some rocks that look climbable, or I’ll bump into an actual rock climber who can shout out directions to me as I clamber up, or someone will throw me a rope.  I know that there are lots of ways out, and I know that just because I can’t see them now doesn’t mean that I never will.

I know that one day, I will be the rock climber, or the one standing at the top of the canyon casting a rope down for someone else.  I will know this canyon inside out, from the steepest drop off, to the one spot you could climb up even if you’d broken your leg on the way down.

And I will never leave this canyon.  Because once I’m out, I will always come back to make sure you are, too.

Photo by William Stitt on Unsplash

I’m Sick. Yay!

Today, I am sick.  But like, temporarily sick.  Which, for a chronically ill person, can actually be just a little bit fun.  At least, for me it is.  Is it fun for anyone besides me?  Not actually sure.  I’m just gonna keep going.

Yeah, having a cold or the flu or whatever sucks, but people understand the suckiness! I can say, “I have a sore throat, stuffy nose, and I feel awful,” and people tell me to stay home and rest! They don’t question it! They actually believe I feel bad! Awesome.

Also, I gotta say, it’s kind of exciting when I can tell I’m getting sick.  Like, I feel bad and want to cancel plans all the time, but now I HAVE to!  People WANT me to!  And I mean, a temporary illness that is easily diagnosable, has a clear route to recovery, and people actually believe exists? HELL yeah, sign me UP!

Another perk is that you don’t have to try to figure out if it’s your illness making you want to drop out of life for a little, or if you’re just being lazy.  You KNOW it’s your illness! (Pro tip, though: if you’re debating this at all, it probably is your illness.  When you feel good, you’ll know.) Disney marathons on the couch are considered part of the healing process! A healing process that will, at some point, reach an end! (Caaauuuse honestly… eternal Disney + the couch can actually be kind of a drag, I’ve found out.)

When I feel bad because of chronic illness, I don’t actually WANT to stay home all the time, it’s just all I can do.  And that feeling’s kind of indefinite.  So, although when I’m done with Temporary Sick, I’ll still have Chronic Sick to deal with, it’s nice to be able to feel like I can see an ending point.

And so, with that: My throat hurts, my head hurts, I am grumpy, my brain feels like a big wad of goo I have wrench all of my thoughts out of, and literally every inch of my skin is sensitive and sore.  I have the flu.  Yay!

 

Photo by Kinga Cichewicz on Unsplash

Accomplishments and Chronic Illness

There are many times when I am told about someone’s life — what they’re doing, what they’ve done, their plans for the future — and, be it family member, friend, or complete stranger, I get absolutely sick with jealousy.  Like, actual jealousy, not envy, and that’s even worse.  Somehow, when I hear about other people’s accomplishments, I feel like they’re taking away my own.

When you have a chronic illness, your accomplishments move in slow motion.  You have to allow time for your body to catch up and heal before you can move on to your next project, sometimes before even moving to the next step of the one you’re on.  And trust me, you can’t bypass the rest time.  I’ve tried.  If you don’t stop, your body will make you stop.

If I can just stay within my own ill little world, I can manage.  I don’t think about things too much.  I do what I can, rest when I need to, and just keep moving at my own pace.  I usually get a lot more done when I’m in that world, but it often gets burst open.  I get news of a friend’s college acceptance, or see pictures of people full of energy, seemingly thriving in life, and it coats my eyes like dust.  I can’t see properly, it hurts, and the more I try to rub it out, the worse it gets.  I can’t see what I was doing anymore, only what they’re doing, and I certainly can’t remember why I was doing it.

The images of other people’s dreams glue themselves over my own, and suddenly they’re my dreams, too.  Of course, they’re not really, but they seem like the only worthwhile ones to have, so I obsess over them, dwell on them until I am truly miserable.  I’m getting better at bringing myself out of this, but most often, the remedy is just time.  Eventually, my own passions push through again, demand to be heard.  I remember I am ill, but I am not dead.  I am not bedridden, I am not in a coma; I am alive and conscious, and though I cannot do as much as I could if I had all my health, I can do something.

And so I do.  Lots of little somethings, and I watch as they grow towards the bigger somethings in my mind.  I do not move at the world’s pace, and sometimes it asks why I’m moving so slowly, but I’m not.  I’m just moving.

Photo by freestocks.org on Unsplash

Relations — Poem

Family scattered

throughout the house

Sugar sits in different shapes

on every table

Video games and movies come

and go through the little family room

The kitchen is filled

with promises of baking; “tomorrow!”s

stacked on every shelf

My dad’s booming voice rings

inside my head as I come down

to breakfast, if I’ve woken up early enough,

and grandma still can’t hear him.

I chase her,

and my mother, away

from sweets meant for under the Christmas tree

And St. Mother feeds us all, despite

being the one

who likes cooking the least.

“We’ll cook!” we say, but

it’s just time to play:

“How much should we get wrong before we ask her for help?”

and she cooks anyway.

There are fights, that is certain,

between whom is the variable. If

your money’s on mom and dad,

it’s not much of a gamble.

But there are fewer, I think,

and since I’m the sole one still growing,

I can’t help but wonder

if I’ve learned something

worth knowing.

 

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Photo by Andrew Neel on Unsplash

When Driving in Fog — Poem

I can feel it
seeping in through my ears,
swirling around my mind, threatening
to coat my eyes.

“When driving in fog, do not turn on high beams.”

But the lever is right there;
light is right there!

“They will only reflect off the fog and make it harder to see.
Stay on low beams and drive slowly.”

Click, lever on.
Click, lever off.
Debate whether to switch lever on again.

“If fog gets too bad, pull over and wait for it to pass.”

But while I wait for it to pass
I will watch the world around me
pass as well!

 

But
I will watch

And maybe, for now,
that is enough.

 

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Photo by Annie Spratt on Unsplash

Idols/Favorite Authors — Poem

I build a home in your words

Sink into the comfy armchair of your thoughts

Prop up one of your pages, a mirror in which to do my morning makeup

I strap on your sentences, ready to face the world

With your paragraphs in my pockets, I am safe

They are not a helmet or a shield, but the ability to bleed

I press them against my heart, wishing I could push them straight through my chest

But I can’t. And that’s okay

Because I will grow up in the home you have built me

And then I will build one of my own

 

Photo by Janko Ferlič on Unsplash