Summer is finally here, which means it’s time for outdoor events, fun trips, and visits from family and friends. I look forward to each and every one of these memory-filled activities, especially now that I live with ALS. But even just a few days of travel or entertaining, combined with my ALS symptoms, can leave me feeling exhausted.
Now when I find myself struggling to get back to my daily routine, I follow a simple three-part plan to manage my recovery. By doing this, I’m able to regain my energy and rebound with ease.
Why the big post-event slump?
I knew my ALS symptoms were contributing to my low energy, muscle stiffness, and foggy thinking. Heck, car trips are fun, but spending four hours in a seated position can leave me feeling stiff as a rusty metal paperclip!
Sure, gentle stretching helped, but I quickly discovered that my mind needed attention, too. I was tangled in an ALS patient’s worst fear: that my tired, stiff body was a sign that my ALS was progressing. This led to all sorts of negative mental chatter. Exercise? Why bother? Plan for the future? Why bother?
Fortunately, a part of me didn’t want to give in, so I thought about how great athletes come back after injuries and created a plan for my own situation. Within three or four days I began to move and feel better, and soon I was back in the swing of things.
I realized I had wasted a lot of time and energy stuck in a mode of gloom and doom, and I vowed to follow my new plan whenever the need arose.
My recovery plan
1. Planning and expectations: Put as much effort into planning my recovery period as I put toward planning the trip or event. Begin by giving myself empty time — or even a few empty days — before building up to my normal activities. Be flexible in my expectations as to how fast my body responds.
2. Practice self-care: Sleep and nap a lot. Drink fluids, eat healthy foods, and follow my normal eating schedule. Try short bouts of gentle exercise and counter the over-exposure to noise, people, and excitement with quiet “me time” activities.
3. Focus forward: Give myself something to look forward to in order to get over the emotional slump. Anticipate returning to my projects and activities. Research points to the many ways having a sense of purpose benefits our physical health. We make better lifestyle choices such as getting daily exercise and eating healthy foods. We choose more effective coping strategies, and when we feel that our lives matter, we take better care of ourselves.
Sometimes, post-event recovery goes a little easier if I’ve practiced self-care during the event or trip. In an earlier column, I shared how I use the C.H.A.R.M. list to prepare.
Let’s create a summer filled with joy and good memories! When disruptions happen, try using my plan. It is among the many ways I live well while living with ALS.
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