The first week of February stands out in my mind. February 2004- I had spiraled over the past two and a half months from a cold to the flu to a sinus infection to multiple medications trying to heal (here’s a post about that and another one here). I distinctly remember the start of February and thinking “another month and I still don’t feel well”. I got a headache turned migraine, and when the migraine went away the headache never did. My stomach hurt so badly after eating (like a knife stabbing into my stomach… and it often still feels like that by the way…), and I knew something was wrong. It was shortly after that that I went to the neurologist for the first time. From there, after a few months, a diagnosis that I had no clue about was uttered: You have postural orthostatic tachycardia syndrome.
13 years ago I got a headache that has never gone away. 13 years of having a headache every minute of every day. No relief, but the good news is that your body really does adjust somewhat to pain. You learn to deal with it, you learn a new normal, and you learn what to give yourself to help manage. 13 and a half years ago it would have completely overwhelmed me to think about living every minute with a headache, of having two to three week long migraines, to feeling pain when I eat. These things would’ve felt unfathomable today.
So here I am, thirteen years later, and somehow I’m living with this thing I never heard of before 2004. Somehow I’ve managed to learn to not only live with pain, but embrace it as part of the life I’m building for myself.
I spend a lot of time thinking in the first two weeks of February about the life I had verses the life I now live with POTS. At times, when I stop to think about it, I feel so overwhelmed. I feel overwhelmed by what I’ve overcome, but I also, at moments, do feel a bit sad for myself. I’m sad that this is what normal is, and I’m sad that I don’t even remember what it is like to wake up in the morning and feel ok. But I’m also a better person because of my diagnosis, and I recognize that too.
Other posts on POTS:
I am the face of chronic (invisible illness), Loss of energy with POTS, 10 years with POTS