Navigating COVID-19 As A Mom With AS
If I could describe 2020 and COVID-19 in one word it would be overwhelming. Being chronically ill is one thing, being on immunosuppressant drugs is another, and now we are going to throw a pandemic into the mix and have to homeschool our kids? Wait, what? Is this even real life?
Yep, it’s real
As if the stress of having to avoid getting sick isn’t enough, now we have our kids (and spouses) home, and this isn’t spring break. We actually have to teach these kids! Pain or no pain, fatigue or no fatigue, this is happening. At first, I honestly was relieved. In the weeks leading up to the school closure my 9-year-old, who is on the autism spectrum, was having a lot of emotional breakdowns at school.
We (the school and I) were weighing the pros and cons of homeschooling for him. There was one thing always stopping me though, and that was my AS. I was unsure if my body would allow me to take on such a task...but not even three days later schools were shut down and it became my new reality. Careful what you wish for, am I right?
Keeping emotions in check
I don’t want my kids to know how scared I am. I’ve always been able to hide emotion pretty well, but all of that went out the window this past year when my AS symptoms began and I was subsequently diagnosed a few months later. When you’re in that much physical and emotional pain there’s just no hiding it. Two days after homeschooling began, I fell apart. Negative thoughts started to consume me.
What if I do get it and my kids have to live a life without a mom? How will my husband handle all of this? What if I can’t do it all? It got so bad that I started having chest pains and trouble breathing, so my doctor called me in a prescription for anxiety medication. I HAD to keep it together for my kids, no matter what it took! And then...I started flaring.
This is NOT the time for a flare!
“This cannot be happening”, I thought to myself when the pain started creeping into the back of my right leg. I don’t have time for this! I’ve got to be a full-time mom, wife, cook, housekeeper, and NOW a teacher too! This is just some sick joke, right? Nope. This is life with ankylosing spondylitis. Inconvenient, unpredictable, AS doesn’t care what’s going on in your life. IT runs this show.
So, what now?
We are two weeks in and things could be worse. The pain has stayed at a solid 6...sometimes creeping up to a 7. The fatigue though, that’s been the real kicker. Every morning I get up at 8:00 AM, start schooling by 8:45, and usually have both boys done by 11:00 AM. I barely can make them lunch, and as soon as they are fed this mama is in bed for the remainder of the day.
If I'm being honest, this makes me feel awful. I see all these other moms taking their kids out on walks and doing fun activities inside, and here I am, in bed 75% of the day. Sigh. I keep reminding myself that this too shall pass, and it will! I’m thankful for the support of other moms in the community, it’s nice knowing I don’t feel these things alone. So if you find yourself struggling, know you're not alone and please feel free to share your experience in the comment section below!
Do you use the word disability to describe your AS?