Today Was a Tough Day
Today was a tough day. I woke up at 5:30 am only to toss and turn until my alarm went off at 6:30 am. It’s been a rough couple of weeks for our family: Keegan’s dear cat passed away, I’ve had long hours at work, and Keegan is managing a toddler while warding off a flare-up. But today was especially challenging.
Changing plans and flares
Over the course of the day, we decided to not travel next week to my dad and step mom’s house in Knoxville, Tennessee. We had been planning this trip for a few months, but amid all the news, we decided to reschedule it. Keegan has been riding a rollercoaster of pain and fatigue as the weather seems to go from 40 and rainy one day to sunny and 70 the next. Today it all culminated in his body into pain, brain fog, and fatigue. The trifecta of AS symptoms.
All this to tell you, dear AS warrior, that by the end of today, I saw your tough day in my tough day. Somehow now that I’ve been living with Keegan for so long and seeing all the work and energy he puts into taking care of himself, sometimes I see that he’s not alone. Reading stories like yours reminds me that others struggle with the same symptoms. It’s tough because no matter the Humira, medical marijuana, yoga, and all the positive thinking in the world, he can’t prevent pain and fatigue. The brain fog still happens. Flare-ups will always be a constant worry. And this is probably much of what you go through, too.
I cried over dinner tonight completely overwhelmed. I bet you’ve done that, too. I’m sick, my toddler is sick, and Keegan is holding on by a thread. And it was the first time I sat down to write an article without any helpful tips or tricks. Rather, all I can say is, Keegan and I are there with you on those tough days. We feel your pain, your struggles, your challenges.
Looking back at this day, I saw small moments that make me hold onto hope. My daughter waking up and so happy to see me. A meeting with a coworker where we just joked about how much we love cereal. Keegan made an amazing dinner. Even on this tough day, seeing these glimmers of joy and comfort let me remember that the tough days will end.
But tomorrow is another day
That’s the beauty of life. Tomorrow I’ll wake up and maybe it’ll be another tough day. Maybe it won’t. I can bet that things will be different, though, and I can bet that I’ll still have a few moments of joy amidst the moments that bring me anxiety and exhaustion. I hope to any of you out there with tough days see this, too. It’s difficult for me to remember the impermanence of life, but it’s there. When things change for the worse, there’s always the chance that things will change for the better. Because the only constant in life is change.
Do you use the word disability to describe your AS?