Baby Steps

Yesterday I felt really proud of myself. I don’t often think about “me” as a person — other than maybe self-improvement or things I want to learn to better understand why my brain works the way it does.

I just started up physical therapy again. I have a goal of getting off my muscle relaxants, which is a real B* if I’m being honest. POTS is an autonomic nervous system (ANS) disorder. This means that everything that a body does for you automatically, mine does not. Or, sometimes it does — but it royally screws me. Like, on my second date with Robert when he thought I was head over heels for him because he felt my heart racing when I was sitting up against him on the couch. OK — maybe I had a little bit of a crush and totally wanted him to kiss me, but my heart always races when I feel any kind of emotion. Most people probably have a slight change, but my ANS is a freaking drama queen.

Anyway, the purpose of taking muscle relaxants for Dysautonomia (umbrella word for POTS and EDS) is that it tells me, “HEY, I am going to sleep, let’s relax like a normal human being.” My body is dispositioned to respond to my chronic pain by always being tight and trying to hold my muscles and joints together for dear life by tensing up. This is especially not good when I am sleeping, as it doesn’t give my body the chance to have a normal recovery. Things just keep getting tighter and tighter, which is really painful. I don’t think anyone in the medical field will appreciate the way I am describing this, but hopefully it kind of makes sense to those who know much more and less than me about what’s happening.

So. Back to my goal. I want to get off this medication I have been taking for years now. When I first had issues with pain I was prescribed Tramadol. I was told it would help with the pain I was experiencing — but upon some quick research, I saw that I was given an opioid. Yeah, nope, too scary. I think some people need this kind of relief, but I was determined to have something so serious be an absolute last resort. So I did vigorous physical therapy. I remained in a great amount of pain, but I eventually made it to a neurologist who specialized in pain management and was a well-known POTS expert. This is how I found the treatment that has worked for me for years now. The only medication I have taken for POTS is a muscle relaxant. I want to see if I can manage on my own, though. I tried by myself and it was a shit show. Lots of pain and managing work felt impossible. I am working with a team to do this now, though. I think we have a good plan, but we’ll see how it all goes.

Now that you have some background, I will get to my recent experience that prompted me to write. I am getting dry needling done right now. It really hurts. I am incredibly tight, have a lot of trigger points, and writing at a computer all day just aggravates everything. After a few sessions, my PT told me that I have a high pain tolerance. I thought this was funny because I felt like I was going to either throw up or pass out during one part of the treatment, but I wiggled my toes to distract myself until everything was over.

I’m proud of myself for never giving up. I’m proud of myself for trying. I’m proud of myself for not complaining and for genuinely loving my life, despite the weird adversity I have experienced. I have been really good health-wise lately, but it is really difficult trying to manage my pain. Everything is so temperamental and I’ve found something that generally works, but I feel like I want better. I am proud that I always made the most of every stage of life. I worked a few hours when I could, then moved to a part-time job, and am working full time now. I gave myself time to cry and mourn the loss of a normal life. I still miss running any time I think about it. It’s been almost 10 years since I last went out for a normal jog. This actually feels crazy, because I so vividly remember how much I loved the feeling of the cold air burning my lungs as I pushed to run just one more mile. I honestly am not used to being in pain, but I don’t remember what it was like having none. I don’t think you can understand this unless you have experienced it yourself.

I have adjusted my whole life to this, but I also haven’t taken a great amount of time feeling sorry for myself. I know people all have things they deal with and I hope I can keep sharing my journey with you. A health diagnoses is a heartbreaking thing, but like in love, hearts heal and adjust. Almost ten years in, I still feel like life with POTS is my “new normal,” but I have healed a lot and plan to continue to do so. I am excited for the moment I can tell you I have made more leaps and bounds. It’s happened before, so I’m optimistic that I still have more that I can improve on. Not sure what this will look like yet, but we’ll figure it out.