Rants of July

T-minus one month until I go back to Mayo to see my doctor. I am still having a very difficult time with exhaustion and body temperature control. I am constantly sweating! It is quite crazy.

I don't want to feel self-pity, but I do sometimes. I am frustrated when I cannot do what I want to do. I am upset when I am forced to take a nap because I can barely sit in a chair without falling asleep. I am mad when I am exhausted the second I wake up every morning after sleeping for at least 8 hours. I am frustrated that I cannot find any relief for my symptoms. I am upset when I cannot remember things that I should know. I am frustrated when I have to take multiple showers in one day because I am so sweaty. I am frustrated after I eat because I become so fatigued and brain fogged. I am nervous about if I will ever grow out of POTS. I am frustrated that I cannot talk to my friends on the phone because I am too exhausted. I am frustrated when I have to plan out my every move throughout the day so that I can conserve what little energy that I have. I am confused as to why I have all of these symptoms since I exercise every day, drink a ton of water, eat a lot of salty foods, take my medications, stay away from humidity and heat as much as possible, and rest throughout the day. I do everything I can possibly do to make my POTS symptoms more manageable, yet the symptoms are still making my life a bit difficult.

I know I have every right to feel self-pity because having POTS is very challenging. There is constantly adjusts that are needed. Even the simplest tasks can be hard to do. I once thought that taking a shower was nothing special, but now I know that I can only be in the shower for 4 to 6 minutes and then I start to feel dizzy and exhausted. I know now that I have to keep a morning routine or else I will forget something, be too exhausted to do things if I do tasks out of order, and be too sleepy if I wake up too early or too late.

I am very sick and tired of being sick and tired. I don't want to be a POTS expert, I just want to be done with it. I want to be able to talk to my friends on the phone or hang out with them rather than sitting at home and wondering what fun I am missing out on. I don't want to be a prisoner in my house anymore; I want my house to be a refuge again. I want to be able to drive, run, bike, swim, workout, shop, dance, travel, and go on adventures. I know I am still young, and there is time for me to do these things, but I am young and have the potential to do what I want if POTS wasn't holding me back.

I don't like it when people say "there's always someone worse off than you". It is almost like they diminish me by treating my pain and struggles as insignificant unless it is worse than everyone else's. Yes, there are people who have much more difficult lives than mine, but I don't want to be viewed as less strong than I am. It is so difficult to live with POTS...no doubt about that! Every second of every day brings about challenges that I don't always want to deal with. I don't want to deal with the fatigue, brain fogging, confusion, occasional constipation, muscle weakness and pain, eye pressure and pain, headaches and migraines, body temperature instability, irritability, noise sensitivity, light sensitivity, palpitations, dizziness, and joint stiffness and pain. That is a lot to deal with every day along with the usual stresses of living such as time management, having an internship, school, preparing to find a job, and living at home. Life isn't simple, but having POTS sure does complicate things!

I am strong. I know that. I make it through every day without complaining very much (which is why I like to vent like this sometimes). I still am able to push through my symptoms to get ready every morning to go to my internship two to three times a week. I have never missed a day of school. I am still able to workout every day even if I feel like my body is giving up on me. I push through everything which is not always easy. I struggle with the fact that I cannot do everything that I want to do. I have hope that one day I will be able to do the things I want when I want to do them. I have hope that POTS will not stay with me in my journey through life. I hope that I can manage my symptoms better and find out what is causing my symptoms to be worse again. I just have to "keep my head up"....