I read something recently that said “do not confuse my bad days with weakness; those are the days I’m actually fighting the hardest.” This statement is so true of my battle with POTS. Over the last 7 months or so, my POTS has been at its worst since I have been in college. I am counting my calories to make sure I take in enough, tracking my water, increasing salt intake, taking meds to raise my blood pressure, trying to get sleep at night, and everything else I can think of to help. Still, though, I have been passing out and missing classes at least once a week it seems like. I have had to cancel plans on my friends and my fiancé. I have had to get extensions from professors because the brain fog was too intense to complete the assignment.
Thankfully, those around me are very understanding. My friends do their best to help me out. My fiancé is a saint and does everything he can for me. My family support me and care for me. My professors are amazing and are more concerned about my health than the assignments. They personally catch me up when I need them to.
Still, I can’t help but feel guilty. I feel guilty for canceling plans and for making people work around me. I feel guilty for making people take care of me. I am a strong-willed 20 year old woman. I should be taking care of myself and I want to be taking care of others. It is a hard pill to swallow when I have to ask for help. I constantly say I’m sorry, which my mom and fiancé get so annoyed by. My mom told me that I can’t say “I’m sorry” because it implies that I can control the situation and am not doing something, when she knows I can’t control it and am in fact doing everything I can to stop it.
It is hard to fight your own body. I try to be strong and to push through, but my body is weakened and works against me. There are so many things I want to do, but some days switching from one set of pjs to another is an accomplishment. Those are the worst ones. I love the sun and walking outside. I love being with people and doing things that involve leaving the 4 walls of my room.
Being stuck inside worsens the fight because it chips away at my sanity and pushes me deeper and deeper into my own mind. The questions start pouring in: what if it is like this forever? What if I cannot finish school? What if I cannot work? What if I pass out on my wedding day? What if I cannot take care of my own kids someday? All of my fears engulf my mind.
I fight this off with prayer and with positive thoughts- focusing on the little victories of each day. I know that God has a plan for me and is with me always. That keeps me going and keeps me fighting. Still, it often feels like there is no end to the war– even when I win one battle (like getting to go to one party with my friends), there is always another one looming. I’m left to just keep fighting.
Having a good roommate is always an important factor to college life, but especially in the life of someone with POTS. When my POTS is acting up, I can hide out in my room from the rest of the world, but my roommate is still there. She has to be able to deal with my POTS too, and help me if I need it. God has blessed me immensely with my roommate.
My current roommate was not my first roommate, but we did meet move-in day last semester. After both of our first rooming situations were not working out as well as we would have liked, we decided to room together. That was one of the best decisions I have made in college thus far. The first time I had a bad spell in front of her was a few weeks ago. Thankfully I was able to make it to my bed before the shaking got too intense and I passed out. She was sitting on her bed. I could tell she was totally freaked out, but she acted so calm. She asked me if I needed anything and just stayed there in the room with me until she had to go to class. Later we were talking and she said I really scared her. But things went back to normal after that. When she looks at me she doesn’t just she me being sick.
As many of you probably know, college can be a very stressful time. There are so many things happening and so much you have to do. It can be very overwhelming, especially for the perfectionist planner that I have a tendency to be. Last weekend roomie and I spent the whole weekend taking a “mental health break”by crafting with paint and canvases. We watched old musicals and Disney movies and just relaxed and had fun together. Then last night I was on the verge of a mental break down, half laughing and half crying while sitting on the floor in front of our door. Instead of telling me to get up or saying I was weird, she just sat down on the floor and hugged me until I was ready to get up.
I am so thankful to be able to room with someone who can handle me, not just my POTS, but all of my quirks. But more than that I am so thankful to have a best friend like my roomie! Academics are definitely important in college, but friendships and times spent laughing and dancing to High School Musical movies while covered in paint and glitter are what you remember, and what help get you through the intensity of collegiate academics.
I have not posted on the blog in a long time. It is not because of a lack of words to say, but the issue of not wanting to accept the words I have to say. When I last posted, I genuinely believed my POTS wasn’t going to be a big problem anymore. I thought that I wouldn’t have to tell people, that I would be able to just be “normal.” That is, until I passed out in front of a lot of people before I was going to assist in leading music for a student-led ministry. It smacked me in the face about the time that the floor did that I couldn’t escape POTS. Instead of accepting that and dealing with it, though, I reverted to the old potsie stand by–avoidance. That mentality of “maybe if I don’t acknowledge it, it will go away.” Anyone that has tried that before knows you can’t keep it up for long, at least without consequences. I started hiding in my room more and being overly paranoid– if I even felt a little off I wouldn’t go do things I wanted to because I was so afraid of passing out in front of people again.
Thankfully I found a group of wonderful girls that encouraged me to be social and get out of my comfort zone. They invested in me-they cared. Some of them knew about my POTS and some did not. Even those that knew, though, didn’t know the full extent. But they saw me for me and help me rediscover the version of myself the POTS paranoia was drowning. This semester I was blessed to officially join their sisterhood- I found where I belong. With their help, and of course a lot of prayer, I have been able to face this semester head on. I am balancing a social life, school work, and job, but I’m not afraid of it anymore. Spells still happen, that’s something I need to expect could quite possibly last the rest of my life, but I don’t hide from it anymore.
It is so easy when you have a chronic illness to try to ignore the problem and avoid dealing with it. However, while you’re sickness is a legitimate part of you, there is so much more to you than just your sickness. Don’t do what I did and let it control your whole life- even more than it tries to demand.
This past week I performed in my school’s theatre production of “Rodgers and Hammerstein’s Cinderella.” I have been actively involved in the theatre department since my freshmen year, but this show came with more fear than the previous ones. I have always known the possibility of passing out on stage, but never did that seem as big of a possibility as this year, with how bad my POTS was the first semester. However, I that worry just provoked the POTS, so I gave my worried over to God and continually prayed to Him for strength and health. He provided. Not only did I make it through the whole week of rehearsals leading up to the show and all five performances of the show, but I thrived on stage. I didn’t feel like a sick girl, just an actress having a ball with my second family. Plus, today is the first post-show-Monday that I have been able to go to school since my freshman year. Not only did God grant me strength, He lavished it upon me. So, I would like to publicly thank and praise God for His gift of strength and health. Also, I would like to thank Him for His blessing me with every single person in the cast and crew and director team. They have all had such a positive impact on my life, and made me feel welcomed and loved.
All the time, God is good. God is good, all the time.
The teenage years are full of firsts: first day of high school, first date, first kiss, fist dance, etc. The first that stands out most to me is the first time I had to be wheeled to the nurse’s office. It was this year. I was in choir and we had gone from standing to sitting to standing multiple times; plus, it was really loud. My teacher let us finish a few minutes before the bell rang, so I walked over to my stuff. I was feeling light-headed and planned to stop by the nurse’s office to lie down for a few minutes, but when I bent down to pick up my stuff, it got worse and the shaking started. My friends around me started to notice and helped me lie down and put my feet up. My teacher called the office and the nurse came running with the wheelchair. Once I was in the wheelchair, the only way out was right in front of my whole class, who of course were staring.
I hadn’t told many people about my POTS. Until I started this blog, really, I was trying to hide it as much as possible. I was so embarrassed that day, afraid people would think differently of me. I shouldn’t have been, though. Yes, it was bad having a spell in front of people-it’s always hard being weak and vulnerable in public- but I shouldn’t be embarrassed of something that is so much a part of me, and I shouldn’t be worried about what people think. If people get weird because of my sickness, then they’re not the right people to be in my life. Spells will happen, and instead of worrying about what people will think, I need to befriend people who will love me through it.
Many times I have tried to make it through high schools basketball games, and many times I have failed. Between the heat, noise, and activity, my body usually gives up and I end up being “helped” (practically carried) out in front of everyone. Last night was different. I was actually able to handle school all day, go out to dinner with some friends, and then watch the whole basketball game.
Sitting at dinner, I wasn’t just a girl with a weird diet; I was a girl chatting and laughing with my friends. Then at the game, my brain wasn’t fogging up my ability to watch; I was able to keep up and cheer on my school’s team. I even got to catch up with a friend I hadn’t seen in a while. Not only did my school win, I won. It can get so depressing when my friends can go out and have fun together, but I’m stuck at home watching the world pass me by. Those times when I can just forget about my sickness and be young mean everything. I thank God for my little miracles; they give me renewed strength to reclaim my life.