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.