The last few weeks I’ve felt okay- a lot better than usual. I still didn’t feel 100% better, but a little better is enough for me.
I stopped myself, and reflected on how I hadn’t had a bad episode in a few weeks, and I was happy. Because like I said, a little better has always been enough.
And then it came- a bad episode.
Although the episodes are painful, I hate them for another reason. I hate them because people see me as not being okay. I do my best, and I’ve never allowed anyone to see what it’s really like. I smile, and tell them I’m fine.
But the episodes are scary.
They are scary because I am unsure of what will happen. Unsure how much worse it’ll be than the last. Scary because it’s proof that this is real, and this isn’t normal. Scary because it’s a reminder that I’m not okay.
Someone asked me today, “so what exactly is wrong?”
I laughed because I don’t really know.
For the ones that read these posts and are curious, below is the best explanation of what’s going on.
My heart beats really fast (tachycardia). It does it while I’m sitting, and while I’m walking. According to my doctor, your resting heart rate should only increase 10 beats when you begin to move and walk. Mine will increase anywhere between 30-100.
A normal heart rate can range between 60-100, but most people’s are in the 70’s.
Mine’s usually 100-200; occasionally it’ll behave and stay in the 80’s to high 90’s for a little bit.
As of right now I’m diagnosed with Inappropriate Sinus Tachycardia.
“IST is a rare type of arrhythmia. It can be caused by the sinus node having an abnormal structure or function, or it can be part of another condition, dysautonomina, a disturbance and failure of the autonomic nervous system.”
I passed the test for a condition underneath the dysautonomia spectrum, but an official diagnosis would require a trip out of state, and there’s currently no good treatment for that condition either.
Basically I am still trying to figure it all out.
I don’t mind people asking me questions. Talking about it does help me feel less alone in all of it. Which I’ll admit, dealing with something like this, that no one can see, and is considered an ‘invisible illness’ is horrible. No one can see how much it’s affecting you, but you don’t want to seem like you’re complaining so you tend to keep quiet. That’s why I love having this little space- I can talk about it all and not feel like I am sharing too much, or a burden on someone.
People with chronic/invisible illnesses deal with a lot. It’s not easy, but we put on a smile. We have to. We have to keep going because life doesn’t revolve around us, and it doesn’t stop just because we’re having a bad day. So we put on a smile, and we continue living.
I don’t know when and if this will ever get better. I am to the point now where I do pray I get healed, but right now I am taking it one day at a time, and just praying for one day.
One day of no episodes. One day where I can forget about it all, and go to bed that night saying, “wow, this is what it used to feel like. This is what normal is.”
And whether or not I have that day here on earth, I do have hope knowing that in the presence of Jesus, when I make it to my eternal home, I will have an eternity of these one days. And knowing that makes all these other days a little easier.