My expectation is that there will not be an earthquake today. That all my family, friends and community members that are healthy today will be healthy tomorrow. That I will not flare today. The ground, mountains, and buildings seem unmovable.
But life doesn’t work that way. In fact, the only thing I can be certain of is change, and that one day I will have an ankylosing spondylitis (AS) flare and it will disrupt my world just like an earthquake. And it’ll be both shocking and unnerving when it happens.
More Than an Ounce of Prevention
Let me pay forward the advice I got from one of my health care providers, who’s also a cancer survivor. Take time to take care of yourself. Your disease will demand attention. Your disease will get that attention on your terms or its terms. It’s far better to spend time taking care of yourself, even if it seems inconvenient. If you don’t, your disease will certainly make things inconvenient for you.
Rather than putting off self-care, I follow a flare prevention list that includes eating healthy food, exercising, taking breaks, and practicing yoga. I also check in routinely with a person on my “AS support team” such as a friend, family member, clergy, therapist, nutritionist, rheumatologist, or yoga instructor.
Manage Flares by Managing Stress
If you’re anything like me, a flare will happen during a time in your life that’s already highly stressful. There certainly seems to be a connection between stress, inflammation, and flares.
When I poll the room at an education/support group meeting with a question like, “Do you think stress causes a flare?” The answer is usually a universal yes. People vividly recall highly stressful times that coincided with terrible flares, like losing a job, taking care of a hurt or dying loved one, moving to a new home, or taking school finals or the bar exam. Even blessed events, such as getting married or having a newborn, can be stressful.
In addition to managing stress, I’ve learned that I need to balance diet, activity, and rest. I’m pretty confident that I can periodically take liberties with stress, diet, activity, and rest. But not all at once. If three are off, then I can pretty much expect a flare.
If I’m not proactive some things, like travel, can throw all of them off and I’ll flare. Traveling across the country could easily mean jet lag, eating fast food in airports, missing workouts, and stress related to missing flights and meetings.
Hope for the Best, Plan for the Worst
Let’s hope that you won’t have another flare. Yes, I know people with AS that stopped having flares. If I do have a flare it helps me to remember that like other flares, it will pass. My body does know how to heal and get past it.
When a flare happens, every tool is on the table. I like to have a plan that covers the severity range of flares from mild to “yikes” to bedridden. Talk with your doctor about what to do when you have a flare. When do they want to be notified? What tools do they think should be in your “flare toolkit?”
Here are some of my go-to tools. First, I have to make time to feel bad. I come from a stoic family that doesn’t acknowledge illness. I have no memories of my father ever taking a sick day off of work or being sick in bed. When I rushed into the emergency room to see my mother who just had a heart attack, she said “I’m fine, it’s just a little one, no big deal.”
So, to me, it feels very drastic to take a sick day off. But I’ve learned that if I’m aggressive at prevention, then either the depth or duration of the flare will be minimal.
Then, I have to get moving. When I feel AS achy, I feel like my body is saying “you’re hurt, isolate from others, rest, eat comfort foods.” So it feels counterintuitive to do the complete opposite. But Inflammatory pain isn’t like a mechanical injury or a cold. Moving can actually help.
The caveat is this: You must know the difference between mechanical or inflammatory pain. When in doubt, go to your doctor. People with AS need to rule out fractures that can occur without a traumatic event. When it is AS, more often than not, it pays to exercise and not sit still.
No matter how cruddy I feel going into a yoga class, I always feel better coming out. There were days that I could hardly stand upright, but I forced myself to run on a treadmill and it “broke the flare” to where I felt better the next morning.
What's In Your Bad Flare Toolkit?
Some things I do for the worst type of flare include:
- Ask my loving wife to regularly check in on me.
- Reach out to a person on my AS team for support.
- Drink water and anti-inflammatory tea such as ginger and turmeric.
- Watch comedies.
- Listen to healing music.
- Take my medications.
- Do restorative yoga poses.
- Do Feldenkrais practices (special patterns of movements) in bed when everything hurts.
- Look at photo albums.
- Do various breathing exercises.
- Let my wife surround me with crystals and white light from a candle.
- Take hot and cold showers.
- Work a yoga ball and other props into painful joints.
I expect that I will have another bad flare. But I have faith that the duration will be shortened and severity reduced by having tools at hand and by building resilience through regular self-care.
Photo Credit: Newton Daly via Getty Images