Being Positive

I debated for a long time what my first blog post would be about. Really there were just too many ideas I had. So instead of starting off super hectic, I'm going to start with something I feel knowledgeable about.

This is everything I felt when I was first realizing I was sick.

Honestly it took having a friend with a chronic illness to realize that things I felt for years weren't typical. Even then I didn't really take it seriously until I got worse.

I got COVID and it was absolutely horrible. I had a never ending headache and dizziness that made the room spin whenever I stood up. The dizziness came with a nausea that I could only think to compare to extreme motion sickness.

A week later I was "better," but the dizziness and nausea came back constantly. When I stood up, when I was walking in the store, even when I turned my head. I thought I had perpetual motion sickness.

I started paying attention to my heart rate from time to time. It had spiked a few times when I had COVID, so I was more aware of it. I was slowly realizing that I had a higher heart rate than was typical.

I only looked further into POTS because my friend happened to mention it and I had seen it in passing on one of my many Google symptom searches.

Months of doctors visits later and I was diagnosed.

Postural Orthostatic Tachycardia Syndrome is a condition that affects much of the body, but is often characterized by tachycardia related to body positioning. It falls under the umbrella term of dysautanomia, which means dysfunction of the autonomic nervous system.

Basically, when I stand up, walk, or sometimes even sit upright my nervous system goes into chaos mode.

My blood pools to the bottom of my body, and because my blood isn't really going as much to my head and my heart, the heart beats faster to try and compensate. There are tons of other symptoms that I'll save for another post, but suffice it to say it's not fun.

Like most of us in the chronic illness community, I was happy to get my diagnosis. I got a lot of comments about how it seemed like I wanted to be sick. What a hurtful thing to hear.

I never wanted to be sick. I was sick. I wanted an answer and a plan.

I was told by multiple doctors that I should lose weight, which took chunks out of my dwindling self esteem. I got weird looks from strangers when I used mobility aids to steady myself.

Things I had been pushing through for so long became more difficult, some impossible. I didn't enjoy things other people did anymore. I was always thinking about trying not to faint.

There are so many opinions from able bodied people on what a sick person ought to be.

Despite everything they will tell you, whatever being sick looks like for you is valid. Whatever emotions you feel are valid. You might be bed-bound and struggling to just keep breathing. You may be using mobility aids to get around. You may even seem completely able-bodied at a glance. No matter what you're going through or what it looks like for you, I am so sorry you're going through it.

I don't think I'll always be the most cheery person when it comes to thinking of and talking about my chronic illness, but I do hope that at my core I can learn to be more positive in how I act day to day. Hopefully writing it all out will help not just me, but other like me.

-Bea