This week is a weird week for me, because as of this week I’ll have had POTS for a decade. It’s weird to think that I’ve been living with something that completely changed my life for an entire decade (although, I actually got POTS in February of 2004, but wasn’t diagnosed until August). I feel so strange going back to think about that time in my life, because it was so confusing.
I felt so sick every single day, and I had no idea what was really wrong with me. I went to one full week of school that entire semester, and I definitely lost some friends because of it. When I realized that there was something legitimately wrong with me, I felt relieved in the sense that I had something to point to when people asked what was wrong. However, I didn’t know much about POTS, and at that point, no one around me seemed interested in learning much either. So I took my medicine and tried to go about my life.
I’ve talked a little about what having POTS has been like, but nothing I’ve written has really fully explained it, and I don’t think words could ever explain it.
What it feels like is that every single day for 10 and a half years, at some point in the day, I’ve come down with the flu. I’ve felt sick every single day for over a decade now- I don’t even remember what it’s like to wake up and feel good or feel normal… normal is this vague idea in my head, but I don’t remember it anymore. When I first got sick, I still remembered what it felt like to wake up and not feel sick like I do with POTS, and I craved that time again. I guess having lived through this for a decade, I don’t remember what that feels like anymore; this is my new normal. I’ve had a headache every single day since November of 2003, and it never goes away. In the middle of that, I get lots of migraines (my longest migraine lasted for 3 weeks before I finally went to the hospital and got an IV). I feel a stabbing pain after lots of meals that I eat, and I’m worried every day that I’m going to pass out. I have very specific things that I do to help compensate for each of these things.
This past Saturday was also a good example. I woke up with a migraine, and with that came a huge amount of dizziness. The ground seemed to rock back and forth, and it was less than ideal. I kept walking into walls and corners of furniture because I couldn’t exactly judge where my body was compared to the objects. I try to laugh it off, but I definitely have some bruises today because of it.
When I got diagnosed, I was really adamant that I wouldn’t let POTS control my life, and no matter how I felt, I’d still push forward to meet the dreams that I wanted for my life. Going into any chronic illness, I think that a strong mindset like that is absolutely critical.
Having POTS has definitely left me feeling on the outside of things sometimes. I live my life pretty differently than the average person, even when people around me don’t notice it. One day last November, I spent an afternoon talking through all the constant adjustments and things I did to deal with my POTS with my mom, and she was absolutely surprised that she hadn’t picked up on all of that in the last 10 years. I’ve gotten made fun of by people, I’ve had people tell me I’m weak (you know- when you have a migraine, sometimes staying out until 4 am is just not what you want to do, right?), and I’ve been deeply misunderstood. I’ve been told I’m lame and pathetic. This hurts, of course, but I know it comes out of a place of ignorance from that person. To me, I’m strong. I get up out of bed every day with a smile on my face, even though I feel like I have the flu. I push myself in exercise because I know it’s critical for POTS, and I enjoy it. The repercussions are far more though for me than the average person, and I have to deal with that as well. I live my life the way I want, on my terms- not on POTS terms… as least as much as I can. (Hopefully this all doesn’t come across as complaining- I’m just trying to give an inside look at what having POTS is like).
Are there days I still get down about having POTS? Absolutely! To most people around me they either don’t know I have it, or I’ve mentioned it in passing. Behind the laughter and smiles, people don’t really know how bad I actually feel, and that’s ok. They don’t need to. I’ve learned to deeply love this absolutely beautiful life of mine- POTS is just something I deal with along the way.
I guess right now I’m just trying to come to grips with realizing that so much of my life has now been spent dealing with POTS. It’s a little sad to me today. But on the flip side, having POTS has shaped who I am today, and I’m thankful for that too. It’s taught me so many things, and has created a stronger person than I was before. It’s funny how chronic illnesses can do that, right? It gives a lot of perspective on the world.
For more information on POTS, check out the following links: