A Day in the Life of a Homeschooling Mom with a Chronic Illiness

Several people in the AS community have been sharing about their daily lives with Ankylosing Spondylitis so I thought, "Why, not?" Most AS patients don't have 4 young children so my story might show a different aspect of life with this chronic auto-immune disorder.

I very rarey sleep well. Most nights, even if the baby sleeps all night, I wake up multiple times because of the pain in my upper back, neck, and hips. When I wake up each day, I have no idea if it will be a good day or a terrible one. Regardless of what the day holds, every morning starts with a stiffness that covers my entire body. It takes a great deal of effort just to get to a sitting position on the edge of the bed. Bryan actually has to push me to help me get up a lot of days. I usually sound like an eighty-year-old woman stretching slowly and  trying to get my body to work correctly. 

Yesterday was no different. When Bryan left for work I began the process of getting myself up. I've learned that taking a hot shower helps so I shuffled my feet (literally) to the bathroom to shower and get ready for the day.  

Once I made it downstairs, literally taking one step at a time because my feet feel like they can't bare my weight individually. I made a B-line for my medicine drawer (yes, I have a medicine drawer). I took my morning medicine (the picture above doesn't even show the middle-of-the-day meds or the evening meds) and then started the coffee. I'm not sure I could make it without the coffee!

 It usually takes about an hour for my body to start moving somewhat normally but yesterday it was more like 90 minutes. My kids started coming down for breakfast. Dylan carried Allison down for me because I have such a hard time going up and down the stairs first thing in the morning. I'm so grateful for older kids to help me! They often pray for me in the mornings as well!

After making the kids breakfast and having them do their chores, I got Allison situated with her toys and her favorite show, Peppa Pig. (Yes, I use the TV to help me manage everything...ha...its ok if you judge me, I have to do what I have to do.) Then I started school with my 3 boys. We're doing 6th grade, 2nd grade, and Pre-K all at the same time. It's a balancing act but I have a specific schedule so that they aren't altogether in the school room the entire morning. The older boys also do some computer work. While I sat with the boys, helping them with their work, my muscles started to "gel" which means every time I moved I dealt with a whole lot of pain. It was especially hard to walk when as I redirected the baby 126 times. She gets into everything!

Even though I have activities in place to keep Allison occupied, she ended up spending a lot of the morning in the school room with us, on my lap and drawing in a little book. She loves to be with her big brothers!

While Dylan finished up his book work and I made lunch, the other kiddos played "picnic." It was absolutely adorable. Even the stuffed animals were eating with them. After lunch, I took my mid-day medication and put Allison down for her nap. Dylan did his computer work and Evan played in his room. 

So, I had a few minutes sort of by myself (notice my buddy, Tyson laying on the couch with me!) I enjoyed a few moments of quiet, letting my body rest some. I spent a few moments studying God's Word. Honestly, I have grown to truly treasure this time. I need this refreshment!

That time didn't last long enough though because I needed to get some housework done before Allison woke up. I washed two loads of laundry and folded one. Folding clothes has become a difficult chore for me. AS patients often suffer from costochondritis which is a very painful condition caused by inflammation of the ribcage. Without treatment, the ribs could start to fuse, just like the spine. This is something I've started dealing with a lot lately so chores like folding clothes, sweeping, vacuuming, etc all cause a lot of discomfort for me. 

I also had to prepare for the online KEEP design session happening last night. Designing keepers and organizing all my charms and bracelets is hard on my knuckles because the everything is so small. Some of my knuckles have been attacked by my immune system which causes pain and discomfort. I also spent time working on my computer to post in the Facebook groups and updating my KEEP team on some important information. After all these chores I was really desperate for another break but Allison woke up so the "quiet time" quickly came to an end.

I needed to get some special shampoos to help my scalp heal from the terrible side effects I've had from one of my medications, so I took all 4 kids to Wal-mart. I toyed with the idea of asking my mom to babysit because this task is overwhelming on a really good day but, I was running out of time to get everything done before dinner so off to Wal-mart we went. It took us an hour and a half to gather all the groceries because my feet were hurting so badly. AS often affects the feet and legs. As the immune system attacks the body it causes inflammation in the entheses, where joints, ligaments, and tendons attach to the bone.

As soon as we got home from the store I began cooking dinner. Thankfully my three boys have gotten very good at bringing in all the groceries. As they brought them in, I put them away and started our Grilled Chicken and Tortellini. The second I could, I collapsed on the couch. I was so tired. Motherhood is exhausting anyway but with a disease like AS there is a fatigue that comes over me that is unlike anything I've ever felt. There are times I just have to close my eyes for a few minutes....there is just no way around it. Once Bryan got home, he helped finish dinner and we ate together as a family.

 

After dinner, I took Dylan to Youth Group at our church. Bryan stayed home and took care of the little kids so I could have a break. The picture above shows a beautiful time of prayer the youth group had at the beginning of their worship time. This weekly meeting is such a blessing to the young people and honestly, it is a blessing to me as well. I get to sit and talk with friends for a while. Its a welcomed break in the middle of our week.

As soon as I got home I had to start the KEEP Online Design Session I had prepared for earlier in the day. I spent the next hour and a half or so, showing customers all that KEEP has to offer, helping them design special bracelets, and trying to book future parties. All I wanted to do was lay on the couch and stare at the TV but this is my "job" and the way I help my family financially so I am grateful that I can be on the couch while I "work."

After the Design Session ended I took my nightly medication and struggled up the stairs to our bedroom. At the end of the day my body becomes so stiff it makes it difficult to even walk, which makes the stairs seem like a mountain. Once I get to my bed, the heating pad becomes my best friend. Seriously, heating pads have been my favorite birthday and Chritmas gifts over the past 10 years. I wear them out constantly! Bryan and I watched The Office (again) and then we went to sleep, only to wake up 4 times due to pain before having to get up and start all over again.

Yesterday was a pretty typical day for me. I didn't even mention all the diaper changing, argument settling, lesson planning, toy organizing, bed making, dishwashing, chauffeuring, or snack making. The pain, stiffness, fatigue, and busy-ness are mostly my norm. When I'm in a "flare" there are days I can barely walk from one room to another so a lot of our activiites come to a halt. At times the entire left side of my body aches and I can barely get out of the bed. So, a day like yesterday is welcomed compared to my "worst" days.

I do not share a typical day of my life for sympathy but rather to show that people are often fighting battles that are unseen. Most of my friends and family probably have no idea how much pain I'm in all of the time or how much medication I've been prescribed to try and combat this disease. It would probably surprise folks to know that it takes me hours to move around properly in the mornings or that a trip to Wal-mart is entirely exhausting for me. Invisible illnesses are so hard for folks to understand. I am not a complainer or a whiner so I barely I talk about the pain I'm in. By God's grace, I keep going even when I don't feel like it one bit!

As I retrace yesterday's steps, I can't help but be overwhelmed with gratitude for the strength God gives me each day. He allows me to get up and push through my symptoms so I can care for my children. I am able to make the most of each day and enjoy my life with these sweet blessings. I would be justified in laying down all day if I wanted to, I mean I do have a deteriorating disease, but God gives me all that I need to live fully, even though I'm in constant pain. I am also thankful for my husband and my children who help me so much. They will do anything they can to help me and they often pray for strength and relief for me. I can see compassion growing within my children and they're gaining the desire to help whenever they can. Walking in my comfortable, orthopedic shoes isn't always easy but there are so many beautiful things to be grateful for.