Everyday Tasks Made Difficult By Ankylosing Spondylitis

By Katie Saville

2 min read

A few days ago, I was asked how I knew my backache was something more than just that. Other than my rapid decline in mobility, I told them I began noticing that tasks that were once a breeze were becoming nearly impossible. These are things no one would think of as being difficult or could probably even imagine as being difficult, but AS makes them so.

The most frustrating part about this is that when I tell people these things bring me discomfort or just aren't "doable," they don't understand why. I hope by writing articles like this, I can shine a light on the things that people wouldn't typically think of as being problematic for those living with a chronic illness but unfortunately are.

Some of the most AS difficult tasks for me

Showers- I used to love a good, long, hot shower, but since developing AS, I sort of dread them. They deplete what little energy I do have, and I usually have to lay down for at least an hour afterward just to regain my strength.
Carpool line- Sitting in the kid's carpool line for 45 minutes can be absolutely excruciating. This was a huge red flag for me as I noticed every day when I sat in the carpool line pain would shoot down my left hip into my thigh and all the way to my ankle. I was so confused and had absolutely no idea what was happening.
Getting out of the car- As if sitting in the car isn't bad enough, getting out can be an even bigger struggle for those of us living with AS. There have been several instances where I have had to call my husband while sitting in the car in the garage to come help me get out. This is sometimes really embarrassing, and not to mention super frustrating.
Standing in line- Standing in line for anything is pretty much off-limits. While a lot of AS patients find relief through walking and moving their bodies, standing stationary in one place for a long period of time can be exhausting to the joints and leave us frantically searching for a place to sit.
Getting dressed- Dressing ourselves can be extremely challenging. Have you ever tried to pull on a pair of skinny jeans mid-flare? Yeah, it's both a workout and a form of torture. Don't even get me started on trying to tie shoes. Youch.
Using stairs- This one I really, really hate. The stairs are my nemesis, and I'm sure eventually it will lead us to selling our home. It can take us several minutes to get up or down a flight of stairs, so please be patient with us!
Socializing and going out- Being present in general can be extremely exhausting for those of us living with AS. While the pain is bad, the fatigue can be just as debilitating. A night out could mean the next three days we're not leaving our beds.

Share your experience

I could go on and on, but I'll stop here. Please feel free to share your experiences and what you find to be the most difficult things to do that maybe the typical person wouldn't.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Katie Saville Contributor
Hey Gerry! That is so funny you mention changing a light fixture because I just changed one in my bedroom with my husband and I swear, that was one or the most frustrating and infuriating experiences I've had thus far. He asked me to hold it up while he screwed it in and that was a lot easier said than done! And yes, totally relate about feeling worse after naps. I've experienced that for years and years and never could figure out WHY until I was diagnosed! Thanks for sharing your experience with me! -Katie, Team Member
Gerry Member
You nailed it, Katie! And the picture of the stairs with little ladders cracked me up - too relatable. I changed a light fixture in my kitchen today which my mind said would be a breeze. Nope. Between having to raise my arms above my head, grip a screwdriver, and balance on a ladder - when finally finished I was exhausted and lucky not to have a broken neck. From needing to rest after a shower, to the challenge of preparing a meal - I hear you. I swear after taking a nap I feel like I need another nap worse than before the first nap. This all seems so ridiculous. Thank you all for sharing your experiences, they remind us we are not alone. I was feeling alone today.
A-larabee Member
Hi <inline-mention user-id="2388661" username="Katie Saville"/> , I don't have a diagnosis for the pain I am experiencing, I have suspected AS or nr-AxSpA for some time now but am waitin gon yet another MRI result (this time with an orthopedic surgeon) to hopefully find answers (although I'm so NOT optomistic) all i know for sure is that 100% every single one of these things has become increasingly more difficult the last 2-3 years and getting qorse (scarily) quickly. Thank you for sharing and making me feel less awful about not wanting to hop int he shower after a looong exhausting day at work!
1. Katie Saville Contributor
 Hey <inline-mention user-id="2389717" username="alarabee"/> ! I am so sorry you are having to go through that. It took me going to a few different doctors before getting a diagnosis. An orthopedic surgeon is actually the one who discovered it, but he couldn't give me a diagnosis. He did, however, set things in motion with a new rheumatologist and I was able to get diagnosed. Mine also progressed at an alarming rate, so I definitely understand the fears you probably have. It sounds like you're on the right track. Just don't stop advocating for yourself. It may take 10 doctors to find the answers, but someone at some point will figure it all out. Sending you hugs and hoping you hear something **positive** soon! -Katie
2. A-larabee Member
 Hi <inline-mention user-id="2388661" username="Katie Saville"/> , Thank you, thank you, thank you!!!!!! I have been agonizing over what I should do next, wait for my MRI results and hope the orthopedic surgeon can give me some answers? Or go straight for a referral to a rheumatologist behind his back? I think I have to trust him, though I think you can understand why it's so hard for me to trust in doctors right now but THIS right here; telling me that it was an orthopedic surgeon who found it in your case, gives me SO much more hope!! So I can't say it enough!! THANK YOU! *Big hugs back* -Amanda
Jessica Gama Moderator & Contributor
I feel like it's so important to highlight these otherwise 'simple' tasks that can be especially difficult with AS, especially because people without a chronic illness just don't understand. Here's a short list of things I find difficult with AS (some repeats from your list): 1. Standing in one place for longer than 20 minutes or so. 2. Getting out of a low-to-the-ground vehicle. I always prefer to take my sports utility places because it's easier to get out, plus the heated seats help with back and hip pain! 3. Preparing meals. I have peripheral arthritis and of course the joints in my right hand are affected, so cutting vegetables or scooping ice cream is difficult! 4. Sitting in one place for too long, especially on hard surfaces. 5. Sweeping and Mopping - the bending over is killer on my back! I know there are so many more things I could be adding to this list, but I'll stop there! Thanks for starting this conversation Katie, and for sharing!
1. Katie Saville Contributor
 <inline-mention user-id="2385156" username="Jessica Gama"/> YES to all of the above! It's just those day to day things that no one would really think about! And I totally relate to preparing meals. I have arthritis in two of my finger joints on my right hand and when they are flared up I can't do anything that requires the use of my fine motor skills. Even jotting down notes can be excrutiating at times. Thank you so much for sharing your thoughts on this topic! -Katie
Lawrence Rick Phillips Moderator & Contributor
I dislike driving. I just do not have the neck flexibility to have enough range to drive safely. That means Sheryl is doing 90% of our driving and while driving was never my big thing, I have to admit that being unable to drive feels limiting. Like you said I could go on and on. Ugh, just what folks want me rattling off the list of things I cannot so.

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