When I was first diagnosed with POTS I never really put much thought into the fact that it was a chronic illness, that I could have it for the rest of my life. All that changed when my symptoms became more frequent and severe. Now I think about it all the time.
Every day I have different symptoms and different things trigger them, so there is no real way to avoid triggers. Here’s a list of symptoms that I have at least twice a week:
Ear pain/loss of hearing
Lower back pain
I am not listing these symptoms as a way of saying “Oh, poor me” I am doing it so that if you have POTS and some of these symptoms you can relate, and maybe feel a little less alone. I deal with all of these, and I get on with my life. I move forward.
Knowing that for the rest of my life I will have days that I can’t get out of bed has changed how I view my future. It is important that I push myself, as well as realize what my limitations are. An example of this is work. I have always wanted to work, but throughout high school that was never an option. I missed a lot of school for medical reasons, and I was advised by my cardiologist that I should hold off on getting my drivers license. I was passing out while sitting at the time, and driving would not be safe. Now in college I work at my schools writing center as a writing consultant. Students come in with different types of writing and I work with them on improving it.
There are two main reasons that I can hold down this job. The most important is that it doesn’t require me to stand. We sit when we work with the students, and if it is a really bad day I can stay seated in the roller chairs for my whole shift. The second reason is that I can cancel my shifts up to an hour before. The other consultants are great and are always looking for extra hours. This is crucial because I can be fine one minute, and contemplating if I need to go to the Emergency Room the next.
In contrast, my boyfriend works at a sandwich shop where he can only sit on his break. This is a job that I physically could not do. I can barely stand for twenty minutes, let alone the three hours he goes without sitting at work.
In the future when I am looking for a job I will have to take things like this into consideration. I may have to turn down job offers because the work environment is not conducive to maintaining my health. I am prepared to do this only because I have an amazing support system. My family is always there for me and I know they, along with my boyfriend, would do anything to help.
That is how I face the fact that I could very well wake up tomorrow feeling bad, or worse than I do now, my support system. I urge you to constantly answer peoples questions. Try to be as honest as you can. No one can read your mind, and with an invisible illness it is crucial that you try and vocalize how you are feeling on the inside. Try not to feel as though you are complaining when people ask how you are and you are constantly saying you don’t feel well. Your feelings are just as valid as the next persons.
Tomorrow you may be in pain, but that doesn’t mean you matter any less. People say pain makes you strong, and to an extent I agree. But, I think the strongest people are those that can admit when they need a break, those that take an extra minute to recover. There is nothing wrong with taking your time.
Your illness is going to knock you down. All that matters is that you get back up again on your own time, when you are ready.