Self-Care with a Chronic Illness
I never truly partook in self-care until I became sick. Now, it’s probably one of the most important things I do for myself.
It’s so important
Since I’ve had AS, I’ve had to readjust different areas of my life. One of which is how I choose to take care of myself. I’ve had to put self-care at the top of my list most days. Self-care for a majority of people is full of face masks, bubble baths, mugs of tea, and settling down with a good book. For people with chronic illnesses, it doesn’t tend to be that simple. Self-care means different things for different people, as I’ve realized.
What I used to love
Something very critical in my self-care regimen is listening to my body. I deal with a lot of pain and fatigue in my day-to-day life, so listening to what my body is telling me is extremely important. For example, one of my favorite hobbies used to be going out to concerts. Seeing my favorite bands in person, being surrounded by people who also love said band, and feeling the bass drum throughout my entire body gave me a type of energy that I couldn’t get anywhere else.
More recently though, I’ve had to almost fully stop going to concerts. When I’m at a concert now, I can’t stand for very long periods of time without my lower back hurting, and then the pain travels down to my hips throughout the night. The next 2-3 days that follow are “bed days” as I like to call them, which is when I’m so fatigued from going to one event that I need to rest it off for days.
What I’ve learned
I know that for the most part, I can comfortably (as comfortable as I can be) do a day outing for between 4-5 hours before I become fatigued and in pain. I take more breaks, and I slow down my pace a lot more than I would have previously. Since learning this about myself, I know how not to overdo it, and how to avoid those “bed days” as much as possible. I fully believe that listening to your body is an important step of self-care for those of us with chronic illnesses.
I developed ankylosing spondylitis at the age of 21. I’ve since had to give up a lot of things that most young adults do for fun. For example, going out drinking and staying out late just isn’t a part of my life anymore. I participate in “normal” young adult activities maybe once or twice a year. If I were to continue going out and partying every weekend, I would become a pile of dust. That just isn’t my lifestyle anymore. I prefer staying in and watching movies, or just hanging out with friends at each other’s houses. Sometimes self-care means cutting things out of your life that just aren’t good for you anymore.
Relationships count, too!
Speaking of things that aren’t good for me anymore, I’ve also had to cut a lot of negative people out of my life since becoming sick. A lot of people don’t understand or don’t want to accept that a younger person can become sick and be in pain for the rest of their lives. I’ve found throughout my journey that removing people that don’t support me is one of the healthiest things I could do for myself. Being surrounded by people who constantly question how I’m feeling or ignore me when I talk about my pain isn’t benefiting me. So I always say having a chronic illness is stressful on its own, and I don’t need anyone who doesn’t support me to be around.
Surrounding yourself with loving, supporting individuals is so important for self-care. You want a network of people that help build you up, not try to tear you down. Especially for those flare days when all you want to do is scream at the world. Make your voice heard by your peers, not silenced!
Yoga helps me
Finding new hobbies that I love to do has been a huge help for me. I discovered yoga along the way, and I’m so grateful that I did. The whole idea of yoga, mindfulness, and meditation is incredibly healing. Yoga is one of the few exercises my body can handle, and I can easily do it from home! On days when I’m not too fatigued or in pain, yoga always makes me feel better.
Self-care is different for everybody
Self-care can mean so many different things. What works for one person may not work for another. When you do find what works for you, though, stick with that. We all need a little self-care more often than we’d like to admit.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?