What an AS Flare is Like
If you don’t deal with chronic pain or illness, you’re probably wondering what it’s actually like to experience a flare-up. Lucky for you, I’ve been through enough for a lifetime, and I’m here to explain what they feel like.
Waking up in an ankylosing spondylitis flare up
Waking up to discover that you’re in another flare-up is disheartening. Again? I’m waking up at 6:30 am in pain again? For the second or third time this month, you’ll have to spend most of the day in bed. You had plans, you had chores to do around the house, and now that’s all on the backburner.
When I wake up early in pain, I tend to be awake in bed for hours. I fall back asleep at some point, and I’m out cold for a few hours due to how tired I am. Then I wake up again around noon and try to finally start the day.
You finally muster up the energy to get out of bed. You may need your mobility device, or you just result to limping around the house slowly. On this particular day, you have a haircut scheduled. You want to cancel, but it’s too late to do so.
Going out during a flare
If you don’t drive, like I don’t, then you’re lucky enough to have to use public transit to get around. Those seats aren’t comfortable for anyone, let alone someone experiencing a flare-up.
You finally make it to the salon and prepare to put on a happy face for an hour. Personally, I don’t talk much due to my social anxiety, so the last thing I would do is mention that I’m in pain, or bug them for an extra pillow for support. I know this is bad and I should just do it, but I feel like a bother.
The haircut goes well, as usual, and I’m back on the bus and in bed shortly after. The seats are comfortable, but nothing beats lying in bed with a hot pack or heating pad on. Also, just going to the salon alone takes up enough energy for one day, so back in bed, it is.
Taking it easy
When your body is flaring, the number one thing to do is to take it easy. Listen to your body. If you don’t, you’ll just burn out a few days in. Some of us learn that the hard way, and trust me, it’s a hard lesson to learn. Especially when you’ve already made plans and the flare pops up unwanted.
Sometimes our routines have to be pushed aside. For example, I like to do yoga to help my joints on most days. During a flare, I don’t have the mental or physical energy to be able to do yoga. When I am able to do it again, I have to start gentle and get back into it.
It’s okay to have to take a break from our activities from time to time. It’s also important to realize that this flare-up is temporary and will go away.
Sleeping with a flare
Sleeping while experiencing a flare-up is incredibly difficult. I’ve dealt with insomnia multiple times in my life, but this is different.
When your body is in excruciating pain, it’s almost impossible to focus on anything else. It’s also nearly impossible to be comfortable. Finding a position that doesn’t hurt too much but is also comfortable enough to sleep in is a mission. Most nights, I can’t sleep till around 2-3. Back when I was undiagnosed and flaring, I spent night after night being awake until 6 am in pain.
Basically, when you finally fall asleep, it’s because your body is exhausted and so is your mind. You pass out and get a few hours here and there if you’re lucky. Even though you’re so fatigued, sleep is incredibly difficult to come by during a flare.
Daily life with a flare
Daily life with a flare is hard to deal with. Between sleep, chores, having to take it easy, and just about everything else, it’s definitely not easy. These are just a few of the things that those of us with chronic pain deal with when we flare-up.
It takes an incredible amount of physical and mental strength to go through flare after flare, year after year.
Be sure to tell the people in your life who experience pain flare-ups how strong and resilient they are, because they’re fighters.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?