Imagine something with me. You go to bed one evening, sleep eight hours. You get some amazing, deep, restorative sleep. You wake up the next morning with little to no pain or symptoms. Say a two out of 10 pain and symptoms that are basically ignorable. I don’t know about you, but I would feel fantastic. Great sleep and low pain? I could take on the world. You begin getting ready for the day. Enthusiastically picking out a nice outfit, forgoing normal comfy clothes. Maybe you attempt doing your hair after a nice, long, invigorating shower. If you feel great, you want to look great. Then, doubt slowly creeps in. How long will this last? What if you overdo it? Is this too good to be true? And then it hits you. The ever-looming fear of a flare.
“Flare” – verb: to burn with a sudden intensity; (of an illness or chronic medical complaint): to recur unexpectedly and cause further discomfort.
When I have a “good to me” day, you will often find me at home. Still taking it easy, wearing my comfy clothes, with messy bun hair, sitting in my cozy recliner with plenty of water stocked next to me. I have been asked why I don’t go out and seize the day. Carpe diem, right? Not if you’re a person with chronic illness(es). What if I go out and take a walk? The sun may be too bright or hot and cause a migraine. What if I go to the gym and get in a good workout? I may zap all of my energy and possibly end up in bed for days. I could indulge in that delicious pizza I have been craving, but what if it doesn’t sit well and I find myself debilitated on the bathroom floor? I am trapped in my own form of prison: the flare fear.
“Flare Fear” – the thought of what might happen if you do too much or choose the wrong activity on a good day, ultimately sending you into a spiral of pain and symptoms and sentencing you to weeks in bed.
To many, the thought of a “normal” day seems like the perfect opportunity to do all of the things our illnesses normally prevent us from enjoying. I wish it were so simple. We realize these good days are few and far between, and we appreciate them when they come along. However, we know if we overexert ourselves, we will continue to perpetuate the cycle of bad days and potentially send ourselves into flares lasting weeks or months. This begs the question if one good day of doing your favorite activities is worth weeks in bed. The toll you pay for feeling “normal” is often high and you are constantly wondering whether participating in something will be the straw that breaks the camel’s back.
I often choose to enjoy my low pain days by still sticking to my own routine. I relish the brief hours of relief and just sit back and relax. I know that sounds silly and counterintuitive, but it is my reality. I would rather enjoy my low pain hours reading a good book and being able to remember what happened, catching up on news, calling a friend and just being more present in the moment. Because, I know it doesn’t take much, if anything at all, to provoke a flare. And this fear imprisons me as I cling to the low pain hours I seldom experience.
Family and friends often ask why I don’t take advantage of my good days like I used to and it is because I have learned that for every good day, there are countless bad ones, and the fear of sparking a string of bad days or weeks immobilizes me. The fear of starting a flare confines me to my home and limits my activities on good days and bad. It is real, and I experience it every single day.