How to Stay Motivated With a Chronic Disease Like LEMS

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by Mary Chapman |

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tips for caregivers

Because there are only about 400 known cases of Lambert-Eaton myasthenic syndrome (LEMS) in the U.S., it’s understandable for someone who has the autoimmune disorder to feel isolated and misunderstood. Add in symptoms including muscle weakness, fatigue, pain, and eye problems, and motivation some days may be hard to come by.

Here are some tips that may help you during such times:

Follow your own body clock

To have a productive day, you should try to follow your personal body clock. You don’t want to set yourself up for failure by trying to accomplish something when you don’t have the energy. There may be times during the day or night when your symptoms are more manageable. You know your body better than anyone.

Break down tasks

Reducing tasks into smaller goals can help reduce stress and promote feelings of accomplishment. In turn, that may lead to more accomplishments and improve your overall well-being. Perhaps you’re reorganizing and want to relocate several small items to another room, for example. Because LEMS can affect walking, why not spread the task over two or three days? Then reward yourself with something you like to do.

Develop and maintain support

Members of an effective support network encourage and support each other, which is important for physical and mental health. Positive support from friends, family, peers, and colleagues can make you more resilient. Your healthcare provider may know of an online support group, or you may try these links: Muscular Dystrophy Association, Myasthenia Gravis Foundation of America, American Autoimmune & Related Diseases Association, Genetic and Rare Diseases Information Center, and myaware.

Carve out time to rest

Like many chronic diseases, LEMS often causes you to feel tired. So, schedule time each day to rest or relax, and apprise your family or caregiver. When the time comes, focus on nothing except resting. This is important for your emotional and physical health.

Be transported with music or a good book

Music can be restorative to counter feeling down. Turn on your favorite sounds and get lost in the moment. One song may move you spiritually, while another may help you relax. If you need to get moving, an upbeat tune may be just the ticket.

Likewise, a good book can lift your spirits. Or it can introduce you to another country or culture, and maybe motivate you to learn more.

Enjoy nature

If you’re feeling up to it, and weather permits, get outside. Walking in a park, or having a seat in the sun by some water or flowers, can help relieve anxiety and depression. If you can’t go out, consider raising a window and letting fresh air motivate you. If birds are singing, that’s a bonus.

 

Last updated: April 13, 2020

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Lambert-Eaton News 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 healthcare providers 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.