LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
Where do I begin? Foremost, I wish someone had told me how tired I would get—how one day of busy activity could lead to two or three days of extreme fatigue—and that I would be sleeping anywhere from 10 to 12 hours a night just to keep a regular routine. I knew I would be fatigued, but I had read that I would be able to continue with my activities after a short rest. What I later learned is that after that short rest, the energy would be short-lived. The more strenuous the activity, the quicker and more severe the fatigue and weakness. At first, it caused me great anxiety not knowing how to handle this condition or how to accomplish my daily activities without the extreme fatigue that went with them.
Something else I wish someone had told me was how rare and unfamiliar LEMS was. The first neurologist I saw had no experience with LEMS; I was actually his first case. He was always upfront with me and told me he was learning as we went, just like I was. We both did our research, and he talked with other physicians from other institutions to help with treatment. About a year into my treatment, the neurology department I was seeing at that time hired a neuromuscular specialist who had experience with LEMS, so my care was transferred to him. Help had arrived! He helped me understand my condition better, including what to expect and how to schedule my day to help with the tiredness.
Another lesson I wish I had known was how to ask for help. Now, I am a very independent individual, and asking for help was not in my vocabulary. I was the guy who was always there for everyone else, but there I was, having to ask family and friends for help with simple tasks…pride goeth before the fall! Things I took for granted were now too heavy or too intense for me…it was a taste of humility. But the support I received from family and friends was extraordinary.
I also wish I had known that a LEMS diagnosis comes with a need for better time management. Though I still sometimes push myself, I have learned to schedule my days better. I understand that, due to my age and LEMS, I am unable to work an eight-hour day. So, I schedule my work and activities for between four to six hours a day, depending on how strenuous they are. I will also schedule a day of rest before a more demanding day. I don’t mean I will lay around and do nothing; I mean my activity level will be more reserved. I will do something that takes minimal effort to accomplish and not overdo it so that I will feel energetic enough for the next day.
Sleep is also a big part of this learning equation. I always schedule my sleep cycle into my daily plans. Without enough rest, I will be unable to achieve my goals, be they chores or a family activity. The planning works wonderfully for known activities, but what about the unexpected ones? I know they happen and cannot be planned for, so I change my schedule as needed. Does this mean that sometimes I’m running on low reserves? Yes. Again, this is life with LEMS, and we must show it and ourselves respect. Please understand that even with all the planning in the world, some days you think won’t be too demanding may make you feel fatigued the next day or two. Be gentle with yourself.
I have been dealing with my LEMS diagnosis for over four years now. I am living a good life with my family and friends; I am thankful every day I wake up and can function on an acceptable level. On this journey with LEMS, you will have good days and bad days, but always be gentle with yourself and never give up.
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