What My Days Look Like Living with AS: Part 1

It’s 6:50 AM. The alarm is going off, but I don’t want to move. I didn’t sleep but probably 4-5 hours. I tossed and turned the entire night, trying (and failing) to get comfortable. The pain makes it nearly impossible to roll over. I give myself a little pep talk to get up, and after much deliberation, I decide it’s time to get going. I slowly bring my stiff body up and swing my legs carefully over the side of the bed. Other than bedtime, this is definitely my least favorite part of the day.

I stand up. The feeling of my stiff joints trying to function properly along with the 3 loud pops makes me wince. I slowly make my way to the stairs. I stand there contemplating my next move. Crap. I firmly grasp the handrail and slowly bring one foot down after the other. I strategically make my way down, sort of walking sideways, careful not to misstep. As my foot hits the floor of the foyer, I think to myself “victory!"

Time to start mom-ing

I waddle my way to the kitchen to make breakfast for the kids, but not before I make myself a cup of coffee and take my medication that enables me to get through the day. I hate taking pills, but I hate the pain of AS more. I move slowly around the kitchen, preparing breakfast for my boys. The dog is barking at me to get her food. Ugh. No kids are around to help, so I grab the wall with one hand, the other hand on my lower back, and slowly squat down to get the dog bowl. I moan and whimper from the pain on the way back up. “This is really some bull-” I think to myself.

After breakfast, we head back upstairs to get everyone dressed. Ah, the stairs, we meet again. Some days I get on all fours and pull myself up one by one, but today I think I can make it up like a typical person. Once I reach the top, I give myself a little mental pat on the back and make my way to my son’s bathroom.

Getting my son ready for school

My son is ten and on the autism spectrum, so he requires a lot of assistance when getting ready for the day. We start with a shower. Yikes, I hate this task. It’s a lot of me leaning and reaching, trying to wash his hair and get him clean while also trying to keep the water behind the shower curtain. After 10 minutes of that mess, I catch a little break because now all I have to do is fix his hair, brush his teeth, and get him dressed. To dress him, I prefer to sit down on his bed. All that standing to shower him really wears me out.

Once he’s dressed and I make my final trek down the stairs, we make our way to the car and head off to school. By now, my medication has kicked in, and I’m feeling much better. I enjoy the drive to school. The seat heater soothes my aching back, and it feels good to be out of the house if only for 20 minutes.

It's not even 8 AM yet

On the way home, I think about all the things I need to get done for the day. I'm already worn out, but this is only the beginning of what a day looks like for me living with ankylosing spondylitis.