Living with Ankylosing Spondylitis

My journey with AS started in my mid-20s. I felt tingling and pain and I felt tired a lot. It took a while for me to figure out what was going on, but in the end, I’m thankful that I got my diagnosis only about a year after I started feeling that pain.

But then I had to accept it, which honestly took a few years. Then, I had to figure out what to do with it. And that’s a very difficult question to answer, mostly because the answer changes all the time. Finding my way around living with AS doesn’t mean that I’m not disabled, and it doesn’t mean that I have everything I need.

I’m a type A personality in a type Z body.

What doesn’t change is that the start of each day is tough. No matter how much I sleep the night before, I wake up tired and achy. Even if I was put into some kind of Rip Van Winkle situation, I would wake up feeling like I’d run the Boston Marathon while being beaten with batons the whole time.

Once I get up, medicine comes first. Then coffee -- lots of coffee. Then I’ll write, go run errands, or do some cooking if my body will allow. Having AS feels a lot like someone else has the remote control for your body. AS can turn me off by pressing the fatigue button, turn my pain up loud, or mute out the things that I want and need to do.

So I make a plan for almost everything, right down to recovery time. Grocery shopping, meal prep, and cooking are all built-in. I’ll get my vegetables and any sauces I need done a couple of days ahead of time. I’ll also do a few “big cooks” a month. I’ll braise chickens, make some rice, or slow-cook some ground turkey. Once it cools down, I’ll put it in the freezer so I can use it later.

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