LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
When caring for a loved one living with Lambert-Eaton myasthenic syndrome (LEMS), it can be hard to find time for yourself. The constant need to help LEMS patients can often leave little room for self-care. But prioritizing your own mental and physical health is essential in caring for someone else. In this blog, one of our LEMS Caregiver Ambassadors, Mark, will share four tips to help you take care of you.
Mark, LEMS Caregiver Ambassador
As a caregiver to my wife, Jamie, since 2019, I can attest to the importance of taking care of yourself. Most caregivers say they struggle to find time for themselves. There is always something demanding our time!
However, creating a balance between caring for your loved one and caring for yourself is vital for maintaining emotional and physical strength. There are small steps you can take to improve your self-care today.
#1 – Take time for mini-vacations.
As in very mini. Not a week. Not even a day. I’m talking about 15 minutes here, or 30 minutes there throughout the day when you step completely away from your caregiving tasks. This might be when your loved one is safely resting, and you can go for a walk, read something funny and uplifting, or call a close friend. Sometimes hearing someone else’s voice makes a difference.
Of course, if you can take a full day for yourself, do that. Many cannot, which is why it’s so important to take regular mini-vacations—every day.
#2 – Find mutually enjoyable activities.
While Jamie and I share the same values, we are vastly different in how we spend our spare time. Preferred TV shows? Like night and day! Our video feeds? From different planets! Different is good though.
What events, shows, games, audiobooks, or videos would you enjoy together? For Jamie and I, it’s playing a classic dice game, or watching home improvement shows and dreaming a bit. It doesn’t have to take hours. Even 15 or 30 minutes of enjoyment together breaks routine.
#3 – Caregivers’ frustrations are normal—release them.
Yes, most frustrations won’t matter a month from now. But ongoing challenges can easily build up.
Develop a community of trusted friends with whom you can share frustrations with in a safe, nonjudgmental environment. I have several friends who are like family: I can call on them at any moment, and I know I can say anything to them without fear. These friendships were developed carefully over years. And, should an emergency arise, I know they would travel to my city and assist me today if I earnestly needed them. It takes time to build that kind of trust, but when you find them, nourish those friendships. Cherish them.
One of my most trusted and safest places to vent is my personal journal. I’ve been journaling since 1977. In a journal, you can say what you want, and you can keep the information private and tucked away if you desire. You don’t have to write every day, just when it helps.
#4 – Stop carrying the weight.
My motto is, “Care. Don’t carry.” You can’t fix everything, so stop trying!
As a caregiver, it’s easy to feel like you’re carrying the weight of the world on your shoulders. But to truly care for someone else, you need to set boundaries, take breaks, and seek support when needed. By nurturing yourself, you can continue to support your loved one without bearing all their problems.
It’s okay to give yourself permission to rest.
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