5 Ways To Survive A Flare
A flare-up, for me, is genuinely marked by extreme fatigue and a generally “blah” feeling — remarkably worse than normal. It’s worse than just deeper pain. It’s all-over. It’s brain fog. It’s total body aches. It’s bone-deep tiredness that knows no mercy. And it’s sometimes accompanied by the feeling of guilt for feeling lazy. Sometimes I can’t — as a writer — even write! And all that requires is the tip of my fingers (and, some cognitive functioning, which I lack on flare-up days).
But there are lots of little things I do to find some respite on those days, and these are especially important when I have to work and stay focused, in which case I try to build them into my day between projects or errands or work.
Rain sounds for stress reduction and calm
I don’t know about you but when I’m flaring up, I feel super agitated. The pain makes me cranky and tired, and sometimes every little thing bothers me. Maybe I didn’t sleep much the night before, or maybe I’m just fed up with being fed up. I play rain sounds in my headphones while I work to keep my blood pressure low, to generally promote a sense of calm, and to kind of create a cozy barrier between me and the world. Plus, there is scientific evidence that the sounds of nature can promote wellbeing.
Intentional stretches for flexibility, mobility, and self-love
This a hard one when I feel super crappy, but even the smallest movement can make a difference. I usually do a few minutes of bridge pose, inhaling and exhaling as I arch and release my back. Here are some of the other moves I do, led by a physical therapist. I try to do a few of these every few hours simply to give my body a chance to breathe and move, and to infuse some fluidity into a workday (where I'm probably pretty sedentary or at the computer). Don’t push yourself but do connect with your body. It's a good way to show yourself some love when things get rough.
Laughter for an endorphin rush
There is scientific evidence that laughter can help us manage chronic pain. Yep, at The European Pain Federation (EFIC) Congress, research was presented that proved humor can be an effective part of a person's pain therapy. And hey, at the very least it can distract us from the pain and frustration. I like to watch a comedy special or a standup show to get myself giggling. It seriously makes a difference — at least by changing my mood.
It's easy to become miserable
One of the hardest lessons I’ve learned about living with AS is that it’s VERY easy to become miserable, to fall into self-pity, and to take my pain out on others (especially if they don’t get it). But (and I stress that this is my personal position) misery doesn’t feed others and it doesn’t feed me. Wallowing in the dark and avoiding pleasure because I feel awful is a one-way road to loneliness, sorrow, and crabbiness. Life is short and hard and I don’t want to avoid the good because I don’t feel great. We don’t deserve misery simply for feeling miserable.
Music and dance for getting in touch with my body
I realize that not everyone reading this is going to have the same abilities or levels of mobility, so I acknowledge that this might not be for everyone! I’m still very mobile (although it feels like I’m made of rusted tin before I stretch or workout) and daily, consistent movement is probably the biggest part of my AS management.
Sometimes, on the worst days, I’ll put on my favorite dance music and simply let the music tease me into dancing. It’s hard to not move when you listen to your favorite music, and even if when I can’t move as easily I still try to have fun with it. I'll blast music as I clean or while I do laundry — and it makes chores more fun and distracting. But, for me, it does more than provide fun — it taps me into my body. It reminds me of my sensuality. It reminds me of myself.
Mindfulness for focus and perspective
Sometimes it helps to seek mindfulness and perspective in the middle of the day. And no, I don’t simply mean, “just be grateful, no matter what!” When you're in pain and your body refuses to move properly and you haven’t slept, hearing someone say "be grateful" is reductive and insulting.
We all know it’s not that simple. Gratitude is a practice and a process, and it takes work. Sometimes I simply breathe in for five seconds, hold for five seconds, and breath out for five seconds. I try to simply focus on my breathing but I acknowledge any thoughts that come my way (it’s okay to think—just come back to your breath!).
I like to picture one thing I’m grateful for while I take this time for myself: Is it access to doctors? Is it being able to write for a living? Is it the ability to call my mother on hard days? Is it my access to hydrotherapy? I can list everything I don’t have or can’t do, sure, but I like to pick one thing I do have and focus on it. It makes a difference in the short-term, and doing it as a long-term practice (even if it sounds unbelievable and unrealistic) has helped me retrain my brain against focusing on the misery. With this practice, I do find sustainable joy and clarity. It won't always be easy, but it's something I'll return to.
Do you use the word disability to describe your AS?