What My Days Look Like Living With AS: The Exhausting Evenings

Last updated: June 2021

I’m sure you’ve heard the saying, “moms don't get sick days." Well, unfortunately, that has applied to me just about every single day that I've been living with AS.

Let's recap

So just a quick recap: Wake up, fight the stairs, make breakfast, get one kid ready and off to school, come home, get no breaks, homeschool one kid, do housework, get in the car, and finally pick up my other child from school. There is some nodding off and fighting major surges of pain in-between, but I have to keep this train chugging along.

Time to get cooking

So now we have finally made it to the early evening hours. As you can probably imagine, by this time of day, I am 100% zonked. I decided tonight I would make my life easier by making the most simple meal possible. I yell for my husband (who has been working from home all day) to come and lift our Ninja Foodi out of the cabinet. I honestly do not know what I would do without this incredible appliance, but I wish it didn’t weigh 26 lbs. This awful back of mine can’t be lifting all that on days like today.

Once it’s out, I grab the frozen popcorn chicken from the freezer and throw them in the Foodi and set to air crisp. They take about 15 minutes to cook, which gives me 15 minutes to sit and do nothing. I love this. I need this. I am thankful for this.

Finally a good break

After everyone has been happily fed, I walk over to the sofa for the second time today and fall back and let myself decompress a little bit. Cooking really wears me out (even though I didn’t technically cook), and I need a good hour before I can get to anything else. I am really blessed to have a husband who not only works from home but who is also willing to clean up after dinner and play with our boys so I can rest this tired, achy body of mine

Back upstairs and time for a shower

At about 6:00 PM, I decide it’s time to head upstairs for the night. Before I head up, I grab myself a large glass of water so I can take my bedtime medications. I hate having to “pop pills” all the time, but I have to do what I have to do to help myself survive.

Once I get upstairs, I head into my bathroom and start the shower. I feel the same way about showers as I do about sitting in the carpool line. I love them because the hot water feels great on these achy joints of mine, but hate them because showers absolutely drain whatever little energy I have left. Not to mention that I really just do not want to stand anymore today.

Let's finish this day off

After my shower, I lay in my bed and give myself some time to recuperate. I prefer taking my showers at night rather than morning because I find them just plain exhausting. If I did it in the morning, chances are a long nap would follow, and I don’t have time for that. So after about an hour and a half (and a serious mental pep talk), I muster up what little bit of strength I have and finish the day off. I dry my hair, I get my boys ready for bed, and I tuck them both in for the night.

Hopes for better days to come

As I climb into my bed, I feel like a hundred pounds have been lifted off my shoulders. I did it. Another day done. And bonus, nothing catastrophic happened. I reach over and take my amitriptyline (which I take for nerve pain) and melatonin. Bedtime is hard (as I’m sure most know), but I’m ready to end today, and who knows, maybe tomorrow I’ll wake up pain-free. As one of our great advocates, Rick, once said to me, this will always pass. It may have been hard today, but better days will happen, and I know this because they always do.

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