My husband and I just celebrated our tenth wedding anniversary. It’s crazy to think about where he and I planned to be compared to where we are today.
The humor is in the idea we thought we actually had control of our plans.
The Unexpected Change in Life Plans
In September 2017, my husband retired from the military. We had plans to remodel our home, travel, fish, and enjoy not moving again. However, soon after starting, the projects began to take longer, and he would have extreme medical episodes that would require hospital stays for days at a time. Pain and muscle weakness were increasing significantly and rapidly.
My husband was eventually diagnosed with inflammatory myopathy muscle disease.
Initially, we were both very relieved that we had a diagnosis. We thought, “finally, answers.” We studied and received great encouragement that the condition could be managed in time.
The next step was to find the right treatment plan.
This is the part we said “in sickness and in health,” right?
Treatment
Identifying the right treatment for inflammatory myopathy can be trial and error. Try one; if things don’t improve, move to another. We severely underestimated the impact and process of finding a successful treatment plan.
The first few medications caused more issues than they corrected. The side effects seemed to increase over several months. Significant weight gain and loss of sleep were the two that seemed to add more stress. In less than seven months, my husband had gained over 75 pounds. To reduce the risk of more weight gain, his doctor recommended an infusion treatment to be administered every four weeks. The first and third treatments required hospital stays due to the side effects, but eventually, the treatments began providing relief.
Physically, he could not do the things he wanted to, even the simplest things on some days. His hands would get so weak between treatments that he would need me to open water bottles or hold a plate for him. My husband was committed to getting his life back, he wasn’t giving up, but the treatments and the daily struggles took a toll on him.
Being On the Other Side Was My Challenge
As the months moved on, I watched my partner in life change and feel controlled by this condition. He couldn’t get control of it or a new routine. This disease was eating away at him physically and mentally. We adapted to the new normal, but none of us had really accepted it. To add to it, the Covid-19 pandemic brought stress.
I was becoming a caregiver for him, a role I feared would be my lasting role, and I was not ready to face losing him.
I worried that his body would not hold on long enough to find a successful treatment plan. I was stressed and a little lost in our life. Life kept moving, and I constantly felt the tug between moving forward and staying by his side. He watched ball games and other family activities from video calls or recordings.
He was missing out on so many things.
It really bothered him to see me doing things he would normally do and carrying his workload when he was unable. At times the workload would be overwhelming, but I also let things go undone to prevent another reminder of what he could not do that day.
I managed to completely kill the grass in the front yard applying this logic.
Turning Everything Around
In November 2020, we met with his specialist and got the green light to try a diet program focusing on food balance and calorie intake. Within a few weeks, he was feeling better, happier, and dropping pounds. Today he is sixty pounds lighter and feeling better than he has felt in years. The weight loss, combined with the treatment, allows him to do more physically.
Our traditional wedding vows shared ten years ago included the words “In Sickness and In Health.” I knew those words meant I would care for my husband during tough times. We have a new turn “in Health” today to enjoy.
I believe being our healthiest is one of the greatest gifts we can give each other.
After feeling the weight of watching his struggle, I learned my health is impacted by his health as well as our children.
I want to keep them all in the greatest health possible, starting with me.
