i’m getting worse (autoimmune update)

Hey, I’m Zach, and I’m getting worse. About eight months ago, I got diagnosed with ankylosing spondylitis, A.S for short. But in reality, it’s something that I’ve been dealing with for over ten years. The short of it is that I have bone growing where bone shouldn’t be. If left untreated, I would just become one giant stiff bone body man. Sounds cooler than it actually is. It’s an inflammatory disease that causes me a great deal of pain and, often, keeps me from sleeping at night. Not sleeping leaves me fatigued and in just this constant fog. Symptoms get worse any time I’m immobile for a long period of time. So sitting at my desk, laying in bed. Airplanes is a big one. Oh, sorry, excuse me. It f*cking sucks. It sucks. I’m living with a baseline of pain every single day, to the point that I forget what it’s like to not hurt… somewhere. Eight months ago, I got language to explain the chronic pain that I had been feeling. But this video is not about my diagnosis. It’s about everything that’s happened since. [i’m getting worse] So I started my medication and for a few months, life was incredible. I was able to sleep throughout the night without waking up in pain. I wasn’t stiff throughout the day, my body felt safe. During this time I was instructed to keep up with physical activity, *laughing* “Bowie!” but as the months passed, I got a little lax. F*cking sue me, I got lazy. I figured you know, I don’t hurt every day anymore, so maybe it’s okay if I missed exercising this week to stay late and edit or you know, it’s okay if I spend the whole weekend on the couch being a lazy sack of sh*t cause that’s what normal people do. But I’m not normal. Not anymore. Like with any invisible illness, I look okay- at least I think, I think, I think I look okay. But it’s a bizarre experience because it’s it’s just that. It’s invisible. You feel like you’re deteriorating on the inside, but you have nothing on the outside to prove it. So no one can see you getting sicker. You can’t see yourself getting sicker. I started waking up again in the middle of the night. At first confused, and then as the weeks went by, a nagging discomfort, then a pain. I was distracted, I was upset. I was back to where I was eight months ago. I was in pain all the time, but still with all that evidence screaming in my face, I was back to the same old bullshit of not accepting my own reality. Why? Why? Why? The truth is– the truth is I started ignoring my disease the second I could, the moment that my medicine started working. I stopped paying attention to it. I stopped researching it. I didn’t want to know more about my A.S. because the more that I would learn, the more I would have to accept that this is now a part of me. This is now a part of me. And that was a huge f*cking mistake. Yesterday, I had the worst flare-up I’ve ever had in my life. My neck felt swollen. I had a horrible headache, my body hurt. Um, today, even worse. So I’m laying on, Cassie Mobis peas, Keith’s Eggo waffles, and real ice. I have my little setup right here. [Keith] Do you feel like it’s worse than yesterday? Yeah, it’s worse than yesterday. My back is stiff, my neck is stiff. I… This whole week I haven’t been able to sleep. I’m afraid that I’m just gonna keep getting worse. It’s so easy to normalize the pain and just think like yeah, this is, how I feel. I don’t want to do that anymore. So it was time to go back to the doctor, finally ready to accept and confront my symptoms, and ready to attack this sickness head-on, and- he said I was fine. My inflammatory markers were still low, which means that the medicine was- the medicine is still working, which meant that I’m okay. And so I had to go home, uh, wondering if it was just all in my head. But then, I thought about you. After my first video on A.S, I got a ton of incredible emails, some people who found out that they also had A.S, or some who just discovered they had a different autoimmune disease, others who just had that something in their lives that they had been ignoring for far too long and decided, it’s time to do something about it. Your emails made me realize that if I’m gonna talk the talk, I gotta walk the walk, and so, I decided to make my health a full-time job. Physical therapy twice a week. Yoga and stretching, first thing when I wake up, and last thing before I go to bed. Long walks with Bowie every single day instead of letting someone else walk him for me. And exercise, especially on the days that I don’t want to. Accepting that, sometimes, being late to work in the morning is a necessary component to my health. Realizing that I need to push things to make room for physical activity in my life. Learning to close the laptop at the end of the day, get off my ass, and go outside. Experimenting with autoimmune diets and natural sleep aids. Listening to my body, and hearing what it has to say. And after all that? I feel okay. *laugh* I feel okay. I still have a baseline of pain, most days. I have days where I’m stiff. I have flare-ups. Some days, I just don’t sleep, and the fog is certainly not entirely gone. And in truth, I don’t know that I’m ever gonna fully be a hundred percent again. But I am done ignoring my pain. I’m sharing this all as a way to show that, treatment is not an upward trajectory. It goes up, and it goes down, and with luck, it goes back up again. It’s a bumpy f*cking road. I have A.S. for life. There’s no day where I get to ignore my treatment or stop my physical activity. This is it. This is it. This is my life. But this is my responsibility. And how I respond now decides the rest of my life, and I decide that I’m gonna kick its f*cking ass. That I’m going to continue to prioritize myself and my health. That this is not going to stop me from doing the things that I love to do, and it sure as hell is not gonna define me. Cause also it’s a stupid sounding disease. It’s Ankylosing Spondylitis. It’s a dumb name. I’m not trying to demean it, but like… I’ve got a lot of life to live and, ain’t nothing gonna hold me back. So, my name is Zach and, I’m getting worse. But I’m also getting better. “Eugene, can you open this for me please?” Eugene: “This does not affect your fingers.” (Keith laughs) Eugene: “You’re just making me do this cause you like-” Zach: “Can you feed me?” Eugene: “See?” Keith: “Is the seaweed helping?” Zach: “Mhm.”

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