Last night, I was supposed to be djing a wedding for some family friends with my parents and having a great night—my Lyme decided I had other plans.
Instead, I sat on a hotel bed, eating microwaveable mac and cheese and watching a Hallmark movie between episodes of paralysis.
I started getting periodic paralysis again about a month ago. It started slow, with about one episode a week, and has quickly increased within the last few days. After the first episode, I finally admitted to myself that I was having a Lyme flare and contacted my doctor. I also had more fatigue, memory trouble, word recollection, and sleep issues.
She wanted to see me right away to ensure we started fighting back before the bacteria took over more. After a couple of weeks, I started feeling a bit better. But unfortunately, the next shipment of my herbs got delayed, and I was without meds for a few days. That was last weekend, and this past Tuesday, I experienced paralysis about six times throughout the day. For those of you who are new here, let me explain what my paralysis is.
Eight years ago, I was at the height of tumbling into the deep depths of a Lyme resurgence and combating Mold toxicity when I got paralyzed for the first time. On a bus home from a football game, I got extremely fatigued and realized I could no longer move my left leg. Shortly after that, I could no longer move my right leg or arms. I experienced these episodes weekly for a few months. But these faded away as I was treated for the Lyme and mold with my PICC line.
Towards the end of 2017, I started getting paralyzed every day, multiple times a day, and this lasted me for nine months. It fully upended my life - causing me to drop out of school, pull back on work, and essentially get babysat at 19 years old. The trauma from this 9-month period has had a lasting impact on how I live my life and how my family lives theirs (even if they don’t realize it all the time).
I had all the tests you could imagine done — CAT Scans, MRI, Nerve testing, etc, and no one could tell us why this was happening to me. The only “official” diagnosis I received was conversion disorder, which means my body manifests anxiety and stress into paralysis.
I believe that this is all from the Lyme disease. The Lyme bacteria may not be directly causing the paralysis — although I think the bacteria could definitely do this since learning people are getting misdiagnosed with ALS when they actually have Lyme — but the stress the Lyme has on my body (and all that comes with it) causes it to shut down.
I’m lucky enough to (usually) be able to tell when an episode is coming. My left side starts to get noticeably weaker, and my left leg is usually the first to go completely immobile. After that, every episode is a wildcard. Sometimes, it will just be my legs that I can’t move. Sometimes, my entire left side. Sometimes, both legs, arms, and even my face and mouth will get paralyzed. In this last week, I have consistently gotten paralyzed in my face first, with my left lip drooping, and have been left unable to speak or call for help.
Along with the paralysis, I get extremely fatigued. I am so tired at times that I can barely open my eyes. When I come out of a paralysis episode — which can last anywhere from 15 minutes to, recently, 1.5 hours — I feel like I just ran a marathon. My muscles ache, I’m even more exhausted than I already was, and I am so weak that I often have to lean on objects (or people) for support as I walk.
When this all happened in 2017, I was still actively treated for Lyme, living at home, and had minimal responsibilities. Now, I have a full-time job, my own apartment, and many responsibilities. Since my hysterectomy last October, I have essentially been in remission (yes, I can use the R-word now), so this flare-up has been sending me into a spiral.
I’m not used to being “sick Cassidy” anymore, and it is really, really hard for me to accept and understand what is happening to me right now. When I used to get paralyzed, it rarely freaked me out (at least that I could express) because I was so used to the episodes and feeling like shit in general. Nowadays, I usually walk at least 4 miles a day, lift heavier than I have in years, and hang out with friends almost every day of the week. I don’t know how to add paralysis into the mix.
I have full trust in my doctor. I had a three-hour appointment with her on Friday, and we have a new plan in place. My rational mind knows this is not long-term, but when you cannot move or speak, rational thoughts mean absolutely nothing.
Over the last few years, I have done extensive therapy to get my emotional side functioning properly. If you want to learn more, I talk about this on the podcast, but I can now happily say I have emotions! I can unhappily say that this means I am terrified every single time I get paralyzed. Not being able to move your body is scary. Not being able to call for help is scary. Having your friends and family members care for you like you are a child (thanks, Liv!) is scary and degrading.
Friday night, I cried in my parents’ arms for an hour. It felt just like 15-year-old Cassidy all over again. But this is life with chronic illness. One day, you're finally living your life; the next, your illness comes barreling down the door. Every day is a different journey — every hour, really.
I know that I have the best support system and team in place (my family is the best) to get me back where I need to be, and we will do whatever we need to do to get me there. But for now, I sit in a hotel room, paralyzed on my left side, watching Hallmark as the next episode takes over.
Have I mentioned lately how we need a cure for Lyme disease?
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