i'm getting worse (autoimmune update)

Hey, it's Zach and I'm

getting

worse

. About eight months ago I was diagnosed with ankylosing spondylitis, abbreviated E.S. But it's actually something I've been dealing with for over ten years. Simply put, I have bones growing where they shouldn't be. If I am not treated, I would become a giant man with a rigid boned body. It sounds better than it really is. It is an inflammatory disease that causes me a lot of pain and, many times, prevents me from sleeping at night. Not sleeping leaves me fatigued and in this constant fog. The symptoms get

worse

every time I am immobile for a long period of time.

So sitting at my desk, lying in bed. Airplanes are a big one. Oh, I'm sorry, excuse me. It's fucking shit. Stinks. I live with a foundation of pain every day, to the point that I forget what it's like to not feel pain... somewhere. Eight months ago, I gained language to explain the chronic pain I had been feeling. But this video is not about my diagnosis. It's about everything that has happened since then. So I started my medication and for a few months life was amazing. I was able to sleep through the night without waking up in pain.

I wasn't stiff all day, my body felt safe. During this time I was told to keep up the pace of physical activity, *laughs* "Bowie!" but as the months went by, I relaxed a little. Fuck, sue me, I got lazy. I figured I don't hurt every day anymore, so maybe it's okay if I missed exercise this week to stay up late and edit or, you know, it's okay if I spend the whole weekend on the couch being lazy. *No because that's what normal people do. But I'm not normal. Not anymore. As with any invisible illness, I look fine;

At least I think, I think, I think I look good. But it's a strange experience because it's just that. It is invisible. You feel like you are deteriorating inside, but on the outside you have nothing to show for it. So no one can see you

getting

sicker. You can't imagine getting even sicker. I started waking up again in the middle of the night. Confusing at first, and then, as the weeks went by, a persistent discomfort, then a pain. I was distracted, I was upset. I went back to where I was eight months ago. I felt pain all the time, but even with all that evidence screaming in my face, I went back to the same old shit of not accepting my own reality.

Because? Because? Because? The truth is...the truth is that I started ignoring my illness the moment I could, the moment my medication started working. I stopped paying attention to him. I stopped investigating it. I didn't want to know more about my A.S. because the more I learned, the more I would have to accept that this is now a part of me. This is now part of me. And that was a big mistake. Yesterday I had the worst attack I have ever had in my life. I felt my neck swollen. I had a horrible headache, my body ached.

Um, today, even worse. So I stick with Cassie Mobis peas, Keith's Eggo waffles, and real ice. I have my little setup here. Do you feel like it's worse than yesterday? Yes, 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 of continuing to get worse. It's very easy to normalize pain and just think that yes, 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 face my symptoms, and ready to attack this disease head-on, and... he said I was fine.

My inflammatory markers were still low, which means the medication is still working, which means I'm fine. Then I had to go home, wondering if it was all in my head. But then I thought of you. After my first video on A.S, I got a ton of amazing emails, some people who found out they also had A.S, or some who just found out they had a different

autoimmune

disease, some who just had that something in their lives that they had. been ignoring it for too long and decided, it's time to do something about it. Your emails made me realize that if I'm going to talk, I have to walk the walk, and that's why I decided to make my health a full-time job.

Physiotherapy twice a week. Yoga and stretching, the first thing I do when I wake up and the last thing before going to bed. Long walks with Bowie every day instead of letting someone else walk him for me. And exercise, especially on days I don't want to. Accepting that sometimes being late to work in the morning is a necessary component to my health. Realize that I need to work on making space for physical activity in my life. Learning to close the laptop at the end of the day, get up and leave. Experiment with

autoimmune

diets and natural sleep aids.

Listen to my body and hear what it has to say. And after all that? I feel good. *laughs* I feel good. I still have a base of pain, most days. I have days where I am stiff. I have asthma attacks. Some days I just don't sleep and the fog certainly hasn't completely gone away. And the truth is that I don't know if I will ever be one hundred percent again. But I'm done ignoring my pain. I'm sharing all of this as a way to show that treatment is not an upward trajectory. It goes up, down, and hopefully up again.

It's a damn bumpy road. I have an S. for life. There is no day when I can ignore my treatment or stop my physical activity. That's all. That's all. This is my life. But this is my responsibility. And how I respond now decides the rest of my life, and I decide I'm going to kick his fucking ass. That I am going to continue prioritizing myself and my health. That this won't stop me from doing the things I love to do, and it certainly won't define me. Because it's also a stupid-sounding disease. It's ankylosing spondylitis. It's a silly name.

I'm not trying to degrade you, but... I have a lot of life to live and nothing will stop me. So, my name is Zach and I'm getting worse. But I'm also improving. "Eugene, can you open this for me, please?" Eugene: "This doesn't affect your fingers." (Keith laughs) Eugene: "You're just making me do this because you like it-" Zach: "Can you feed me?" Eugene: "See?" Keith: "Does algae help?" Zach: "Mmm."