After My Daughter’s Diagnosis, I Put Off Taking Care of Myself

I love the expectation, hope, and anticipation that comes with the dawning of a new year.

Opening a newly purchased planner or journal and writing down all I hope to accomplish in the new year is refreshing.

For those of us living with or caring for someone with a rare disease, a new year can bring with it hopes for a new treatment, funding for new trials, and the potential for increased health. It is a moment when we can anticipate all that is good. 

Personally, I enjoy setting goals and establishing a vision for my life in the new year. In recent years, that desire took a back seat to our daughter’s diagnosis of Lambert-Eaton myasthenic syndrome (LEMS).

For two years, I was consumed. Doctors’ appointments and monthly treatments filled my calendar, and I had no room or energy for vision or personal goals. At the time, this was appropriate and needed to be front and center in my life in order to stabilize our daughter’s health and get her the best treatment possible.

I was unable to set goals or a vision, because in my mind, nothing mattered more than saving my daughter’s life and preserving her mobility and quality of life. But beyond goals and dreams, I began to neglect my own personal care due to my increased focus on our daughter Grace. I was so overwhelmed with her health, doctors’ appointments, and treatments, the last thing I wanted to do was make yet another doctor’s appointment for myself. So I didn’t.

Along with the medical aspect, I also found I was unable to focus on things I loved prior to Grace’s diagnosis. I was unable to pick up a much-loved novel and focus enough to read. I could not formulate words to write creatively, as I had done for years. Baking, which had been a passion, had even lost its luster. Exercise was a distant memory.

I knew it was in my best interest, as well as my family’s interest, to take care of my physical and mental health. Turning on some music, spending quality time with friends and family, and keeping a gratitude journal all helped me pivot toward a more balanced and healthy lifestyle. Little by little, I found my way back to balanced mental and physical health.

I began to make the dreaded doctors’ appointments for myself. Slowly, I found myself concentrating enough to do the things I had always loved to do. I began to settle my nerves and brain enough to read for leisure. Food started tasting good again. Books came alive on the page and words began to flow from my pen. 

And so, at the beginning of this new year, I find myself smiling as I open that new planner and flip through the crisp, blank pages. It’s a year full of promise and space to work on goals, dreams, ideas, and plans. Of course, these plans include Grace, and how we can move her forward in her health and adjusting to her new normal. But this year, these plans also include personal goals, health, and dreams of my own. 

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Note: 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 health provider 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. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.