My husband, Todd, and I had our second doses of the COVID-19 vaccine last week. The side effects from the first shot hadn’t been bad for either of us — just minor headaches — but the second one hit us harder.
Todd woke with extreme chills at 2:30 a.m. the morning after, but thankfully he had a caregiver that night, and she piled blankets on top of him. I developed the chills around 5 a.m. along with a headache.
In the morning, Todd was tired from a restless night, but he was ready to get out of bed because his body ached. I put the transfer sling under him, and then I felt so exhausted that I needed to lie down next to him for a few minutes before lifting him into his wheelchair.
I fed Todd cereal, laying my head down on the table in between bites.
There are no sick days for spouse caregivers.
Once Todd was set up on his computer, I lay down, but I couldn’t sleep with my head aching. I closed my eyes and half-listened to episodes of “The Office.” It was distracting enough to get me through to the afternoon when my headache finally subsided.
Distracting myself from pain is a coping mechanism I’ve developed as I’ve lived with the sorrow of Todd’s ALS for over a decade. Grief is always there, bubbling beneath the surface. At times it spills over, and I cry for what we have lost and what we are losing as the disease progresses.
Sometimes I think it would be nice to have a job outside of our home, not only for the money, but also for the mental stimulation and social interaction. But finding caregivers is stressful and expensive, so I look for things I can do from home while I take care of Todd.
My creative pursuits are good distractions. I wrote a series of novels set on the Keweenaw Peninsula in Michigan, where we live, and during the holiday seasons, I make Fraser fir wreaths. I sell my books and wreaths at craft fairs, and the small income they generate is helpful.
Recently, I’ve been on the lookout for another project, something I could make during the summer and add to my tables.
I’ve been perusing Etsy for craft ideas using natural elements from our area. I love collecting driftwood and rocks from the shores of Lake Superior, so this spring I decided to try my hand at pebble art.
I went to several beaches and gathered materials. I bought the needed crafting supplies. Todd designed a logo for me and ordered a stamp so I can mark my creations with the tag, “Lake Superior Pebbles.”
I created various scenes with people and birds, and even Todd got in on the fun, suggesting pieces to make a man sitting under a tree.
I don’t know how they’ll sell at the fairs, but creating them has been a fun distraction anyhow.
This morning we listened to the news as I got Todd out of bed, and then we discussed the current state of our world over breakfast. It is so overwhelming and hard, just like our lives, so I try not to spend too much time dwelling on things I can’t change.
“There’s beaches of pebbles waiting to be made into art,” I said.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?