1. I've left my 'done' wash in the dryer for a record of 5 weeks.
I have an ample amount of clothing. Ask any of my friends; I'm the closet for all. My prized possessions are my 40+ sweatshirts, 20+ pairs of jeans and 15 pairs of sweatpants. I have enough of every category to last through a zombie apocalypse. In order to get to my washer and dryer, I have to go through my door, down the stairs, open two more doors, walk down a few stairs, plow into the stuck outside door leading into the basement, a few more stairs and then open and slam the door with a loose clasp all the while trying not to drop anything or slip on my ass. It truly is exhausting.
2. If I wake up in sweatpants, I usually wear them the rest of the day if I don't go to work.
Sometimes I ponder all of my wonderful sweatpants. Sometimes I picture myself lighting them on fire, hoping it will give the determination and energy I once used to carry. But then I laugh hysterically knowing that it's not the pants, it's my body that I'm at a war with.
3. I would rather stay at home with my cats than go socialize with humans that silently judge me.
I'll admit it. I love my cats. They are a pain in the behind most days, but they get me out of bed. And if I can't get out of bed, they are right by my side. When I'm in my worst pain crying in bed unable to move, Dimitri is right by my side, eyes wide, making sure I'm comforted. If I'm hunched over the toilet from medication withdrawals, Ellington and Dimitri both are there. I've said this previously; through this journey, I've lost a lot of important people in my life but I have also gained very close and trustworthy friends. Nonetheless, socializing with animals that can't judge me sometimes puts me at ease.
4. I watch mostly old television shows and fantasy movies because sometimes realistic film hits too hard for me.
The Avengers, Gunsmoke, Bonanza, Bugs Bunny, Pan's Labyrinth, Hell Boy, Inception and Cloudy with a Chance of Meatballs are some of my favorites. It takes me away from reality temporarily. It brings me to a world without pain. It soothes my mind and makes me forget for a moment that my body is silently trying to kill me.
5. I. Hate. Dishes.
Something I used to enjoy, while jamming out to Paramore and dancing around my kitchen, I now loathe. Occasionally my hand goes through weak spells or tremors and I usually drop dishes if I'm not careful. On top of that, I usually wait until my sink is completely full before I do them. So looking down for more that 30 minutes starts to give me burning pain in the back of my head. Sigh.
6. Music is my favorite therapy.
Whether it's concerts, a night out in Elkhart Lake for live music or violins echoing in my bathroom while soaking in essential oils, it cures my mind and mends my soul slowly and wonderfully. Recently I have been stuck on Twenty-One Pilots, Lewis Watson and the Ray Charles Pandora station. I secretly wish the world had music in the background of every moment like in the movies.
7. Sometimes I think I'll never get married.
Wait, I'm 23 years old.... And I've already given up? People question this all the time, especially my mother. I don't think anyone without a chronic condition understands it, no matter how hard I try to explain it. Men that I've dated in the past have seen me as weak, like a wounded fawn in the dead cold of winter. I've been slammed with pity, shame, embarrassment and loss. I've been given up on, left for dead because I am not able to be handled. I don't need someone to take care of me, I just want someone shows empathy. I keep putting off dating until I am 'healed' but in all honesty, that may never happen. And I have always felt this will go away like the flu; but it is now a part of me. As corny as the Marilyn Monroe quote is, I truly don't want someone to have me at my best if they can't handle me at my worst.
8. I've started to find out who I am, and I am genuinely starting to love myself inside and out.
I've found parts of myself that I never knew existed. One is my mental strength. I've broken down many times in the past few years, feeling completely useless and weak. But I finally realized, I've gotten back up every single time. No matter how many times I've said, "I want to give up" I never have. I've also started to let down my guard and be my weird self. Usually I'm coy and shy, unaware if new people will accept me or reject me. Same when my TOS started. Because it is an invisible illness, people automatically assume you aren't as sick or as hurt as someone with a visible illness. Truth is, it's almost worse. And I always felt silly or stupid for covering it up and pretending it's not there. But recently my attitude has been: This is me....Accept me or not and I will do the same.
9. I cherish the little things the most.
As I've said, I recount the people I've lost in my life to TOS, and the number is relatively shocking. I think of all the hurt I've endured from people that thought I was crazy, or a cry baby, or even worse: faking it. I've had to scrape myself up from the bottom of the ocean, cheek-stained tears and weak heart, just to have it keep happening. So when I get a heart-warming text message when I wake up or someone from my past reaches out to me, I am more than over-joyed. When someone I haven't talked to in awhile asks me if I need help, I am grateful. I was freezing at work while on night shift by myself, I forgot all of my warm clothes and didn't have any dinner. My friend dropped off hot chocolate, extra layers and dinner. I think about it now and a huge smile comes across my face. That's what I think about when pain swirls through my entire body, slowly trying to capture my soul. It's what keeps me sane.
10. The people that have helped me the most are constantly on my mind.
I have gained some of the best friends through this experience. Friends that ask how I'm feeling and truly care about my answer. Friends that want me to get better, not because they are sick of hearing about it, but because they want me to be healthy and happy. Friends that have left an amazing impact on my heart. Those people remain on my mind through most of the day. There are days I feel guilty because they have helped me so much and sometimes I can't return the favor. And there are days where I feel humble from their generosity. I fear negative situations will arise for them, but hope that they don't. It's a burden and a blessing.
11. Back to the dishes confession, I'm pretty used to frozen food.
One of my passions is cooking. Salmon with rice and charred asparagus. Steak with pepper jack mashed potatoes and green bean casserole. Homemade 3 cheese spaghetti with wine-sauteed veggies. I constantly look for new recipes. However, cooking takes a lot out of me. Grocery shopping, carrying the bags in to my apartment, prepping the food, making the food, putting the leftovers away, cleaning up the kitchen and wash the dishes. Thinking about that almost puts me in a sleepy state. So now I've resorted to corn dogs, edamame, ice cream and the occasional applesauce and cereal. My mom is kind enough to make dinner bowls of her home cooking for me too. I am definitely not complaining; I am incredibly thankful I can eat without pain, as I know others aren't as fortunate.
12. Coffee has no effect on me anymore.
I don't know why I go through the motions of making coffee in the morning. I'm a one-cup-lady so I have a Keurig. I make dark roast coffee. The only effect it has on me is the shakes. There are times where I've woken up, sipped my delicious brew while watching the news, and passed back out within 5 minutes. It's not that my body is caffeine intolerant. It's literally just that it doesn't give a shit anymore. It's so tired that it wouldn't care if I put 10 cups of coffee in it. It would just respond with, "Cool, now where's my bed at."
13. I lay down in public places all the time.
Sometimes my body is exhausted. Sometimes my body says no, and just needs to rest. I used to never give in to it. But after reading "How to be Sick" by Toni Bernhard, that all changed. Toni taught me that I need to listen to my body rather than ignoring it or pushing it off until later. I've given in and have rested on restaurant booths, a row of office chairs, my aunts' living room, the backseat of my brothers' car on a longer drive and even the gross airport floor. Some people look at me like I'm weird or automatically assume I'm a young lazy 'kid' or hungover. But the truth is, I'm just exhausted. And I don't really give a crap why people are staring at me or what my friends and family think. If my body says it's time to rest, I rest.
14. I feel bad for my body.
My mind and heart are on the same page. They communicate correctly, correlate decisions, and truly care about my well being. The rest of my body is in a completely different book. I silently think to myself, "Please, body; calm down. Relax yourself. You work so hard and keep me living. Now rest up to be pain-free." When I toss and turn at night from leg cramps, crying out, "No, no! Please stop," I silently try to convince my body to stop destroying me. I silently wish it wouldn't keep trying to destroy itself and hope it gives in to treatment and rest.
15. After months of ignorance after surgery, I've finally have come to the realization that I may be living with this for the rest of my life.
This runs through my mind often. I picture my future. A different job. A different city. Marriage (Only if a man can accept my cats.) A house full of Pinterest design projects I hope to one day have completed. Vacationing in Europe. Children. A Leonberger or German Shepard or Lab. When I picture it, I envision both sides of the spectrum: With and without Thoracic Outlet Syndrome and Fatigue. I need to be realistic about my future and can't keep living in a fairy tale thinking that everything is going to be perfect. Because let's be honest, we all know nothing in life is perfect.
Equanimity.
-Kelsey
No comments:
Post a Comment