ALS and Wellness Blog: Even Summer Fun Needs Dedicated Recovery Time

Yay! Summer is finally here, which means it’s time for outdoor events, fun trips, and visits from family and friends. I used to attack summertime activities as if every day was the first day of vacation from school. But my ALS has changed all that. Now, even just a few days of travel or entertainment, combined with my ALS symptoms, can leave me feeling totally exhausted.

Over time, I’ve learned to follow a simple three-part plan to help manage my recovery. With it, I can regain my energy and rebound with ease.

Now, whenever I have a tiring “adventure” out and about or, find myself struggling to get back to my daily routine, I go right into the recovery plan. It’s just another example of my new normal and how I strive to live well while living with ALS. I hope this strategy will be of help to you too.

Why the big post-event slump?

Early on, I knew my ALS symptoms were contributing to my low energy, muscle stiffness, and foggy thinking. Heck, car trips are fun, but spending even two hours in a seated position can leave me feeling as stiff as a rusty metal paperclip! A four or more-hour trip without a break feels overwhelming.

Sure, gentle stretching helps, but I discovered that my mind needed attention, too. I got all tangled up 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 thought loops and mental chatter. As in...

Exercise? Why bother? Tired, stiff, and exhausted is how I’ll be feeling f-o-r-e-v-e-r!

Plan for the future? Why bother? I’m going downhill anyway.

Fortunately, a part of me didn’t want to give in, so I thought about how great athletes come back after an injury and created a similar plan for my situation. Within three or four days I began to move and feel better, and soon I was back in the swing of things.

This made me recognize I had wasted a lot of time and energy stuck in a mode of gloom and doom. So, I vowed to follow my new plan whenever the need arose.

My recovery plan

Planning and expectations: Put as much effort into planning your recovery period as you put toward planning the trip or event. Begin by giving yourself empty time — or even a few empty days — before building up your normal activities. Be flexible in your expectations as to how fast your body responds. ****For me, a whole day spent out and about needs to be followed by 1-2 days of low activity.
Practice self-care: Sleep and nap a lot. Drink fluids, eat healthy foods, and follow your normal eating schedule. Try short bouts of gentle exercise and counter the over-exposure to noise, people, and excitement with quiet “me time” activities. ****I do my morning and evening stretches; it looks a lot like chair yoga. In bed, I do gentle knee pulls and rolls. I find that avoiding intense technology and instead, refreshing my senses with views of nature, sounds of soothing music, and spending time in a low-light environment help me relax and rejuvenate.
Focus forward: Give yourself something to look forward to to get over the emotional slump. Anticipate returning to your projects and activities. Research points to the many ways having a sense of purpose benefits our physical health. When we have a purpose, 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 blog post, I shared how I use the C.H.A.R.M. list to prepare myself for the holidays.

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 - - and I believe you can too.

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