In Control of Losing Control

I'm a writer, singer, pianist, gamer, and lover of all the hidden beauty in the world... but right now, most of all, I am sick. I am a spoonie.

[chronic-this]

Chronic illness is simultaneously being the burden, while carrying the burden.

(Or at least that’s what it feels like)

[chronic-this]

Them: “Stress and anxiety are only going to worsen your condition. So stay calm.”

Me: “Okay…” I say, while attempting to hold back tears as I desperately try to avoid the fact I am having anxiety about the need to not have anxiety about a chronic health condition that disrupts my whole life.

[chronic-this]

Me: *sweats profusely, starts to feel chest discomfort and begins to have blurry vision at the dinner table*

Me: *has POTS and everyone at table is aware of condition*

Apple Watch: *alerts me that my heart has been above the high heart rate threshold for over ten minutes at rest*

Me: “That makes sense.”

Me: *checks watch*

Apple Watch: “163bpm”

Him: “just take off the watch and you’ll be all better.”

Me: *exhausted from having to always explain my disorder a million times over but still getting similar responses, while heading towards another loss of consciousness*

Many minutes later:

Him: “maybe you should just stop wearing the watch.”

[chronic-this]

I don’t know who needs to hear this right now, but… get a bath seat.

[wearingmystripes]

my body’s check engine light is on

[chronic-this]

Legit

[chronic-this]

What I Grieve Because of my Chronic Illnesses: A Non-Exhaustive List (that only scratches the surface)

*All the opportunities that I could have had

*A future I thought would be possible

*My career that I had only just began

*My friends and family, who walked away, as I slowly faded into the walls and sheets of my bed, while chronic illness stole my ability to be the person that they expected me to still be.

*My independence and self-reliance

*My pride

*My passions

*Who I was

*My potential

*My purpose

*My Hope

[chronic-this]

Last week, there was a life or death crisis situation, regarding one of my family members.

He didn’t have anyone. So I pushed myself for six days, knowing that it would make me bed bound for at least a few weeks afterwards.

I don’t regret it because what is 2-3 weeks of a crash, in comparison to someone’s actual life. There’s no takesie backsies on that. There’s no respawn option IRL.

It’s just… ppl ask me how I can do what I did the past six days and have ME/CFS… they don’t see what happens afterwards. They don’t understand PEM (post-exertional malaise) and that it is often delayed by hours, days, etc. And when it hits, you’re stuck in bed, with the most debilitating fatigue, pain, vertigo, nausea, inability to talk, visual issues, migraines and so much more. Sometimes I can’t even speak.

I mean, that’s what the method of pacing is for. By doing less, I can do more? And the past six days, I had to push past my pacing, and now I will pay the price.

But my loved ones don’t see me behind closed doors. They don’t see what it looks like. I just become invisible within my blankets.

It’s so hard to explain to those who don’t experience it. And I understand that it is difficult to fully grasp from the outside, unless you’re living with me and see me everyday.

I don’t know. I just needed to vent.

I don’t regret the past 6 days. I knew I’d pay for it. And it was for a good reason.

I can do things sometimes. But there’s always price.

Thank you for listening 🖤

[chronic-this]

I’m so fucking tired of feeling like I’m climbing Mount Everest, while I’m merely standing in front of my closet trying to figure out what to wear today.

[chronic-this]

I want to live more than anything. The thing is, my body wants to make that really difficult. It constantly robs me of the things I love. It changes so drastically that it becomes impossible to carry on doing the things I adore or that make me feel even a little bit productive and useful. I get it. I listen. So I try to adjust and adapt. Let go of things I’ve loved because sometimes holding on is more painful than the act of letting go. I attempt to change my perspective and alter my goals/aspirations. I try to find new things that I can do within my limitations. I attempt to sculpt a new path for myself. And I do. I find something else and I try my best to make peace with what I have to leave behind so that I can embrace what I have gained. But then, my body chimes in, changes more, stops me again and says, “nope. You can’t do that either.” And the cycle begins again. I’m just so tired. I’m just so tired of trying to adapt, only to adapt again… and again. Until there’s not many other options.

[chronic-this]

Have you memorized every single ding and imperfection on your ceiling too?

- a bed-bound chronically ill person.

[chronic-this]

“In my dreams, I look in the mirror and I see my younger and healthier self. When I wake up in the morning, I put on my glasses and see my body falling to pieces. I feel the grief all over again as I come to terms with the shock. As I do... every single morning.”

@chronic-this

[chronic-this]

I make some really weird noises trying to get into my compressions leggings...

[chronic-this]

Oh.. and then I need to take a nap after I get them on cause daaaaaaaamn, that is hard work.

[chronic-this]

I make some really weird noises trying to get into my compressions leggings...

[chronic-this]

“Just a chronically ill girl, holding on to her healthy girl dreams”

- @chronic-this

[chronic-this]

[chronic-this]

Brain fog is like my shadow.

It is almost constantly there.

Like a stalker, it watches my every move.

It watches me put my clothes on backwards.

It watches me as I struggle to shower

And mocks me as I collapse on the floor in absolute fatigue.

It terrorizes me with moments of clarity,

Giving me hope for future tomorrows,

Just to take it away from me a moment later.

Constantly reminding me of my place

Like an abuser, telling me not to get any silly ideas.

- @chronic-this

[chronic-this]

Who else spends their time struggling with balancing a ton of medications-some that you have to take with meals-while also balancing supplements that you also need to take with meals but also have to be taken a few hours away from other medications... 🙃

[dynastylnoire]

Mannnnn listen. And then the ones you can't take while driving so they need to be taken before you go to bed. But taking them is ultimately going to make you wake up at 3am to pee.

[chaneldiorxoxo]

Not to mention the ones you have to take right before bedtime and with food, how are you supposed to not gain weight with that regiment?