LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
It’s that time of the year! Balancing life with Lambert-Eaton myasthenic syndrome (LEMS) management can already be a challenge without adding the stresses of holiday events, traveling, and end-of-year commitments. It’s important to maintain self-care practices during this busy season, so we asked three of our LEMS Patient and Caregiver Ambassadors to share their tips for balancing self-care in their lives.
Greg, LEMS Patient Ambassador
Dealing with a rare autoimmune disease, like LEMS, can be very stressful, and working to keep it in perspective is important. I remind myself that I did nothing to cause this disease, and it is not my fault. So, be gentle to yourself and stay positive. Good self-talk is important. Keep telling yourself, “You’ve got this,” and remember to take one step at a time—just make sure you take that step.
Also, listen to your body: Respect it, and if you need a break, take one. And remember, beating yourself up over something that is not your fault will not solve or ease anything. It will only make you feel worse.
Jamie, LEMS Patient Ambassador
The gift I give myself is stress reduction. Whenever I feel overwhelmed, I remind myself to let go of the stress. Sometimes that means I lie down for a little bit to let my body rest. Sometimes it means taking slow, deep breaths until my mind feels focused. But most of the time, what reduces my stress is watching animal videos or cooking vegan recipes I find online.
I also think it’s important to maintain a positive attitude and to give yourself a pep talk whenever you need one. It really works! I often think of this quote by Alan D. Wolfelt: “Our words have the power to communicate to ourselves, to others, and to the universe…”
I really believe that, so I focus on the positives in life.
Mark, LEMS Caregiver Ambassador
As a creative person, I have long recognized my need to recharge daily. The problem was, with my new and ever-increasing responsibilities as a caregiver—and my day job—self-care was getting shoved to the side. Literally squeezed out.
As someone who has invested in self-reflection by journaling for 48 years, I used my journal to draft a plan to reprioritize self-care based on this simple premise: “If I don’t care for myself, I cannot care for others.”
Your LEMS Self-Care Toolset is the Best Gift You’ll Get
Whether you’re a LEMS patient or caregiver, it can be easy to put your personal and mental health on the back burner. This advice from Greg, Jamie, and Mark could help you prioritize it. LEMS might bring certain obstacles into your life, but knowing how to manage your stress and self-care is an important part of your treatment plan, and may help you through them.
© 2024 Catalyst Pharmaceuticals, Inc. All Rights Reserved. LEM-0410-1 November 2024