lyme disease,

it’s so strange to be chronically ill and have really Not Good things happen to your body all the time and you’re just like “here we go again”

“mom, my pupils are different sizes again” “mom, my kidney hurts again” “mom, one of my toes turned white again” “mom, I’m having heart palpitations again” “mom, I’m having my fourth fever of the day” “mom, I feel dizzy and unmoored from reality again” 

like the first time it was a bit alarming, now it’s just a wheel spin of what fucky shit will it be today

Does the reality of having a chronic illness ever just slap you in the face? Its like wow I’ll never be able to do that thing that I’ve always wanted to do.

We learn to tolerate the physical pain. You have to. But it’s the overwhelming emotional burden that makes you feel like someone is holding your head down in the water. You can fight it, but you can never overcome that crushing feeling. How are you supposed to get rid of an emotional suffocation when the source of it is never going to go away?

Being sick is being stuck in the eternal clutch of the unknown. Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious or depressed or completely lost when all that lies ahead is a giant question mark.

—  Lauren Anne
Keto Month 1 results

•Lost 12.4 pounds
• Lost 4.75 inches from my waist
•Lost inches everywhere else (too many numbers to document here…I am documenting though)
•Sleeping more soundly, waking up refreshed (at 0430 q am, no doubt)
•Carb cravings? What carb cravings? GONE.
•Getting shit done like a boss (ENERGY!)
•Moods=stable (as much as a moon-child, Cancerian INFJ can be)
•MOST IMPORTANTLY: Chronic Lyme symptoms have nearly vanished. I am amazed!

I can not believe how happy this lifestyle has made me in so little time. I’m motivated, exhilarated, thinking clearly and able to focus. I love my new lifestyle!

I think maybe my least favorite part of chronic illness is how much time you spend in limbo. Obviously the good days are good days, and the thing is that the worst days are when you can implement your emergency measures - take your pain pills, get in bed and call the whole day a wash. It’s a done deal. 

But most days are in between, spent sitting and waiting to see if you’re going to be able to do anything or if you’re going to have to give up. You can’t just give up every day, and you actually get really fucking tired of lying in bed doing nothing, but you can’t just will yourself to have a good enough day to be productive. You can try to advance on a task, see if you’re capable, only to find yourself on the brink of collapse, maybe even hurting your health because you so much as tried to do something. 

So then you go back to spending your 10,000th hour in bed or on the couch waiting for something to change. It’s really, really boring. 

  • My friend: You're so lucky you don't have to go school. I wish i could sit at home all day!
  • Me: Yeah, you're right. It's so fun sitting on the side lines, stuck, watching all my friends accomplish their goals, get a job, get their license, date people, go to parties, finish school while i'm sitting at home. Sitting at home in pain, discomfort, misery, waiting on some miracle medicine to make this awful illness go away. Struggling to sleep and struggling to stay awake. Struggling to shower and dragging myself out of the house everyday for a damn doctors appointment. You're right, i'm super lucky!
This needs to be said

I know myself and other sick/disabled people included get a lot of mistreatment from healthy people. These “normal” people seem to assume we are sick or disabled because we don’t take care of ourselves or try hard enough to get better. We hear it when they suggest basic shit like, try yoga, eat more kale, try vitamin x, go to bed earlier, just get out of the house more, just take a tylenol, exercise more, try to be more positive ect.

Here is the truth: we take great care if ourselves. If there was an award for attempting to be as healthy as possible we would win it. 50-60% of our day is spent taking care of ourselves (some people spend even more time if they are really sick). Sometimes we spend so much time trying to be healthy, we have no energy for anything else.

All it takes for a healthy person to get sick or disabled permanently is a change in DNA sequence, a cell mutation, sudden neurological disfunction, an introduction to a neurotoxin, sudden immune system dysfunction, introduction to a bacteria, a cold that remains permanently stagnant in the body, a freak accident. Our lives can never be completely controlled. Normal people need to understand they are at risk for these horrible events also. Regardless of how hard they try to prevent these things, shit like this happens everyday and it cannot be controlled or “fought”. We need to understand this.

2

“run my dear, from anything that may not strengthen your precious budding wings. run like hell my dear, from anyone likely to put a sharp knife into the sacred, tender vision of your beautiful heart.” ~hafiz

this. this has been seven years in the making. two months of running. no injuries, no pain. not fast, but running. seven years of countless “i don’t know what we can do anymore,” and “maybe your body isn’t capable of running.” 

finding out i had been silently battling lyme’s disease for years was the weirdest mixture of relief and fear i have ever experienced - realizing i had a reason and an explanation was gratifying, but wondering what that would mean going forward was intimidating. but here i am today, 3 months lyme’s free, and helping my body grow into the best version it can be. like i said - i’m not running fast - but it’s thirty magnificent, breathless minutes of running with seven years of gratitude in each step.

p.s. a tremendous thank you to @championsaremade and @rachaeldee - thank you for being gloriously inspirational beams of light, hope, and motivation. it has been nothing but encouraging and empowering to see you, christiana, conquer your injury and come back with even more fire and passion than ever. and rachael, watching you dominate your marathon and continue blossoming into the gorgeous go-getter you are today has been so unbelievably wonderful. you both are such beautiful souls that inspire so many people to continue striving to be the best they can be. thank you both for encouraging so many people to fearlessly chase their dreams.

{my beautiful bracelet courtesy of dan - my biggest fan and dearest supporter}

Something I find endlessly frustrating about having a chronic illness is the people that tell you how lucky you are to have it.
“Oh, I wish I could get up late everyday!”
“You’re so lucky that you get to miss so much school!”
“I’m so jealous, I wish I could lie in bed watching TV all day!”
Do you really think this is a choice? Do you think I choose this life of isolation? Choose to have this problem with me that will never get better? Choose to always, always be in pain/discomfort?
If you are not a spoonie and you see this, take one small moment to appreciate how lucky you are to be able to do everything you can do, even if you don’t enjoy it. I’m jealous of your 6am starts. I’m jealous of your packed weekdays. I’m jealous of your workouts and social lives.
Trust me, you don’t want this life.