The Kindest Thing A Fellow AS Patient Told Me
In the midst of a horrible flare-up, I turned to the Facebook communities for AS patients that I'm a part of. Most of the time, I'm just looking to share my ideas and thoughts (and mourn for my body to an audience who gets it) but sometimes I'm looking for advice.
Even though I feel I know the answers, there are people who have lived with AS way longer than me — and know the ebbs and flows of a mean flare-up, or how to soothe an inflamed SI joint with certain yoga moves. Who knows. I'm willing to listen.
Asking an ankylosing spondylitis group for advice
I asked how people deal with horrible, debilitating flares (after being mobile and active for so long) and got the kindest response.
One woman, named Maria, wrote me:
I feel you. Flares can be so discouraging and debilitating, but you have kept active this entire time and I do believe you will get back to your normal you. Here is what I do for myself in these cases. Be kind to your body. Do light stretches throughout the day, eat well, try to sleep (lots of healing is done during sleep) even if it means you take melatonin to help you get there.
Keep moving: light walking, slow salsa or Zumba, sometimes even slow foot drills. Take your meds. Reduce your stress as much as possible, laugh and surround yourself with good people who understand. This is temporary. It can last 2 weeks or 2 months, sometimes more. But I’ve always believed that AS forces me to take better care of myself because when I don’t, I feel pain. That to me is a gift. My body kicks me in the butt (oh yes pun intended!) when I don’t treat it right and in the long run this will be best for me. Hang in there. You will be back to you in no time.
I loved SO MUCH about her kind response
I love how she took the time to listen to me — and heard how passionate I was about movement and dance and responded to that.
I love how she didn't just share "take this medicine or do this steroid shot," she listed the things I did have power over. That I could do in my home or with ease: Light walking, surrounding myself with good people, reducing my stress, being kind to myself.
I love how she wrote "this is temporary," because it's a reminder that we don't often get, and that we may feel is untrue. Even if AS is lifelong, she's right — this particular flare will pass.
I love how she related it back to her and gave me a sense of her humanity.
And I love how she ended on a positive note. Look, I know that AS demands a gravitas. I have all the gravitas I need in my heart. It is so beautiful to see a stranger pass such kindness and optimism on. Hell, if this post is any proof — I can actually feel the good energy, and it's helping.
Do you use the word disability to describe your AS?