Since being diagnosed a few weeks ago, I’ve found myself in a constant state of anger. My life was very much put together before this all began in January last year. I was living the “dream.” I was engaged and had one more semester of college left. My future was looking bright until it wasn’t.

I’ll be honest with you: I’ve had a terrible time trying to come to terms with it, and my coping skills are lacking. How could I have worked so hard to overcome one chronic illness just to be slammed with another one? First, Cerebral Palsy, which was caused by a defect at birth (unavoidable) to POTS, which was caused by having COVID-19. There’s been speculation on whether or not COVID-19 is serious and if the shot was worth the risk (this blog will not be political, so please do not make it that way in the comments). I can tell you that it has turned my life upside down.

Without going into too many details, I can’t walk like I used to, drive like I used to, or even breathe like I used to. Someone is with me. More often than not, I am even more of a fall risk than I was before. And that is a tough pill to swallow because if you know me, you understand that I am the most independent person on the planet, which leads me to why I am writing this post.

When I went to see the POTS specialist, he set me up with a ton of referrals to other specialists because POTS can cause a multitude of different medical conditions, which I’m sure I will write about later on.

Yesterday, I had two appointments, one in the morning for Physical Therapy and then a wheelchair evaluation in the afternoon. You might ask yourself why this is necessarily a bad thing. Isn’t that helpful? The short answer is yes; however, I had many mixed emotions.

Growing up with Cerebral Palsy, I had physical therapy five days a week for literal years and had to fight to go from crawling to walking with assistance at the age of five. At age seven, I spent an entire summer confined to a wheelchair due to a major surgery that was going to loosen my hips, hamstrings, and heel cords. That was a time in my life that changed my brain chemistry. I would have to be carried into the bathroom by my elderly grandmother and my six-year-old brother. One held me up under my arms, and the other held my legs, but I fought for my independence, and it got to the point that, eventually, by my teen years, I was walking completely unassisted.

Going back to the age of thirty-four, after I had fought so hard for so long to be independent, was a slap in the face, especially since this is something I have no control over. I went in feeling defeated, as if everything I had worked so hard for had disappeared. And I could tell you on my own without the knowledge of a physical therapist that I have lost all of my muscle tone, I have no core strength anymore, and I am about fifty pounds heavier than I was this time last year. I felt like such a failure like I was that little girl all over again.

Fast forward to the wheelchair appointment. Alison was kind, but everything was overwhelming: power versus manual, what would be most accessible for me, etc. Again, I felt like the little girl stuck inside that summer of 1997, watching her friends play from the front window of her parent’s house, confined to a chair.

After it was over, my mind was racing about how quickly my life had changed in such a short time. I’m not going to lie; I had a nice cry, but what else are you supposed to do?

I’ve always been the type to accept things as they come, but I can’t quite let go of this yet. It hurts. It sucks. I am right back at square one. The question I pose to myself is whether or not I have the same fight I had in me all those times before. I’m tired. So tired. It’s been a year, and we have only just begun.

Here’s to my new normal. I hope you follow this journey with me.

xoxo

C