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Conserving Energy with Myotonic Dystrophy

In my office I have a sign that says “I promise to be kind and gentle with myself and to honor myself with love and respect.”

I look at this quote every day. It helps me to remember to take care of myself which includes eating mostly healthy foods, exercise, surrounding myself with supportive people, etc.

When you have a rare disease like Myotonic Dystrophy (DM) which causes extreme fatigue, being gentle with yourself is especially important. This can look like many things but the one that I want to address in this post is CONSERVING ENERGY.

It’s a concept that might take time to get your mind around because it can be interpreted by others as being lazy. But, if you conserve your energy where you can you will have more energy for the important activities that you enjoy or need to do.

In 2005 Michael got a large sum of money from social security for back payment when the attorney won his social security claim. Michael decided to take our family to Disneyworld with some of his money. Of course, this was exciting. While we were there we rented a wheelchair, only one wheelchair for our entire family. But since I was the only one without DM who would push more than one wheelchair? As we went around the park different family members would rotate sitting in the wheelchair, depending on who was fatigued at the moment.

One benefit of this was shorter lines for getting on the rides. But also, while we were waiting in line, each person took turns sitting in the wheelchair therefore being able to rest for a moment. My family got a kick out of imagining how this looked to observers and their possible thoughts questioning our need for the wheelchair. By having this wheelchair my family was able to have more energy at the park to do things that they wanted to do.

When we are out and about the act of conserving energy is something that I need to regularly remind my family to do. Being inactive when they are home is no problem, they do that quite well. But when we are out in public they don’t want to display their disability.

For instance, we buy season tickets to the University of Utah football games. In the past my family parks in town and takes public transportation (Trax) to the game. Once they are at the stadium there is a long walk to the venue and to their seats. There is a shuttle that will take them from Trax to the stadium but no one wants to wait for it. So, they walk. Kent walks carrying his oxygen tank and struggling to keep his oxygen levels up. This isn’t smart but I have struggled getting him to do it differently.

This year we bought expensive season tickets that have an elevator that will take us up to our seating area. Having access to this elevator has been worth the extra expense. I have insisted that we drive to the stadium and I drop everyone off as close to the stadium as we can get, then I park the car away from the stadium and take Trax and the shuttle, conserving my energy. My family resists this because it is not the routine that they are used to, but I insist. By conserving energy everyone has a better time at the game because they are not as exhausted from the process of getting there.

Due to their impaired fronto-temporal lobe which affects their ability to plan, all of these conservation techniques are difficult for them and they will default to the old way that they are used to. Since I am aware of their default I choose to be vocal and insist that they do it with the most energy conservation possible. Being vocal and pushy has been very uncomfortable for me but I am finally over thinking that I am bitchy and I just do it.

You might want to look at ways to conserve energy, even if you don’t have a disability. It saves energy for the activities in life that you enjoy.

Here are some tips for conserving energy that I got from the Cleveland Clinic.

  • Simplify your tasks and set realistic goals. Don't think you have to do things the same way you've always done them.

  • Plan your activities (chores, exercise, and recreation) ahead of time. Space out your activities throughout the day. Do not schedule too many things to do in one day. Do the things that take more energy when you are feeling your best.

  • If needed, rest before and after activities.

  • If you become tired during an activity, stop and rest. You might need to finish it on another day or when you feel less tired.

  • Do not plan activities right after a meal. Rest 20 to 30 minutes after each meal.

  • Ask for help. Divide tasks among family and friends.

  • Get a good night's sleep and elevate your head when sleeping. Be careful not to nap too much during the day or you might not be able to sleep at night.

  • Do all of your grooming (shaving, drying your hair, etc.) while sitting.

  • If needed, use devices and tools that assist you such as a walker, shower chair, hand-held shower head, bedside commode, or long-handled tools for dressing (such as a dressing stick, shoe horn, or sock donner).

  • Wear clothes that have zippers and buttons in the front so you don't have to reach behind you.

  • If your doctor says it's OK, you may climb steps. You might need to rest part of the way if you become tired. Try to arrange your activities so you do not have to climb up and down stairs many times during the day.

  • Avoid extreme physical activity. Do not push, pull, or lift heavy objects (more than 10 pounds) that require you to strain.

  • For more energy-saving tips, tell your doctor you would like to speak to an occupational therapist.

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