What My Days Look Like Living with AS: Part 1

By Katie Saville

3 min read

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.

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Doreen H Community Admin
Hi Katie, Thanks for sharing your morning with us. Boy, can so many of us relate to that trip down the stairs or bending down to fill that dog bowl. ❤ ~Doreen
Lisa Marie Basile Moderator & Contributor
Hey, I just want to send you a lot of support. You are amazingly resilience and the fact that you show up to your family while battling this pain is a big deal. You have a support system in us.
1. Katie Saville Contributor
 Thank you so much Lisa. That truly means a lot. I don't know how I (or anyone really) would be able to cope with all of this without this amazing community!
Lawrence Rick Phillips Moderator & Contributor
Katie: I do what i call the morning inventory. When I wake up I run a NASA style check list of my body. Feet hurt - check, Legs dont hurt - check, Hips dont hurt - check, Fingers hurt, ouch - check. then I try moving things, Legs move - check Feet over the side - check I use this crazy check list to start every day. Somehow it is reassuring. It gives me a chance to start off like i am getting ready for blast off. For me blast off is getting to coffee. Ahh Blast off. That first sip of extra hot coffee. Maybe something like that will help you out. by the way blast off might be son out the door. or feet on the floor. Also maybe it changes each day. Some days in the summer I wake up on my bicycle one mile away form home. Ahh, Blast off one mile done. Its each step of the routine I get to celebrate. Here's to great blast offs every day. rick - moderator
1. Katie Saville Contributor
 Rick, I love how you assess the whole situation from the get-go. I run through something like this in my head as I make my way down the stairs. With every step, I take in what pain I am feeling and where. After I do that, I try to figure out the cause for each pain. Is it unusually cold? Did I overdo it the day before? Am I stressed? I'm all about trying to find the root cause and try to find ways to make the next day better than the last. I definitely love your concept of blast off though! I feel like for me that is probably in the car on the way to school. It's like from that point forward, I can go on with my day at whatever pace I need. This is really fun way to think of it!