My Spondylitis Self-Care Story
Mainstream discussions about self-care for health and wellness are generally geared toward preventing, treating, or reversing illness and disability through good habits and choices. The thinking goes that people who do the right things get good results.
Of course, it's problematic to hold up a proper lifestyle and hard work as virtuous talismans against illness in the world we're living in, or when an illness's cause has yet to be identified. What are we supposed to do when brushing and flossing, yoga, exercise, positive thinking, sleeping eight hours each night, and looking both ways before crossing the street hasn't kept us from harm? Now what?
This silence is not golden
Our culture hasn't opened up a mainstream lane for helpful conversations about self-care for spondylitis bodies, bodies that don’t always function as typically abled bodies are expected to. In effect, this puts our bodies out past the edge of the page, where old time map makers used to draw sea monsters, dragons, and the end of the world. Do you have a tail? I haven't got one and all attempts at breathing fire have failed.
My own story
My own path to effective spondylitis self-care was rocky and full of missteps. In the beginning, I was in denial. Yes, I knew and believed my diagnosis, but somehow changing my way of living didn't happen, no matter how poorly things were going. And there wasn't much support. Nobody told me what could be done at home to feel better, and nothing seemed to help anyway. The constant grinding nature of AS fatigue, pain, and dread of disease progression put me into an unhelpful struggle headspace. And my deep anger at the situation and disappointment with body's betrayal made it nearly impossible to show myself any kindness.
Change of heart
2013 found me ready to take my self-care seriously. It helped that my AS had progressed enough that it couldn't be ignored, pushed through, or otherwise overruled. Taking a leadership role in the Spoonie Twitter community was the final push for me to start cleaning up my act.
My regular self-care plan includes:
- Prioritizing sleep and rest throughout my day. This means preparing to be in bed by 10 PM, scheduling rest between tasks like chores, writing, or holiday preparations.
- Consuming music, shows, and movies that make me happy.
- Removing myself from situations that don't build me up. I try to avoid arguing on the internet, disturbing news coverage, or anything else that wastes my time and energy.
- Wearing proper shoes to protect my feet and knees from the shock displaced by walking.
- Preventing cold sensitivity through wearing hoodies, gloves, and other warm clothing as needed.
- Engaging in gardening and other hobbies in an adaptive manner that protects my energy levels and joints.
- I believe that embracing my divergent disabled body is the foundation of my self-care success. This meant accepting that my spondylitis related needs are real, normal, and nothing to be ashamed of.
The following mantras help me to validate my needs:
- Everybody deserves to have their needs met.
- Taking time for rest and recovery is normal and the right thing to do.
- I deserve self-care even if it doesn’t reverse my illness.
- It’s okay to use resources like plastic straws and other disposable items when I need them.
- Struggling doesn’t make me a bad patient or a failure.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?