I’ve Got the Fire in My Soul

Spontaneity is what I miss most about my pre-LEMS life. No longer can I hop in the car and go to a concert, the beach, or a quick weekend away without planning around meds and treatment schedules.

Even with the best-laid plans, I find myself pulling over to make sure I haven’t left any of my meds at home. When you are as fortunate as I am to have amifampridine and Mestinon (antimyasthenic) work as well as they do, it’s scary to be hours from home without them.

But I don’t live solely for my Lambert-Eaton myasthenic syndrome (LEMS) treatments and meds. When events come along that put fire in my soul, I will go if there is a way. It’s what makes life worth living.

Anyone who knows me surely noticed from pictures of the myasthenia gravis support group meeting I attended last month that I was exhausted. The meeting was two days before my scheduled intravenous immunoglobulin (IVIG) replacement therapy, and I was running on empty.

My trip didn’t end with the meeting, though. I also attended a concert with my friend Jessica Fossett. The 10th anniversary show of our favorite Maine-based band, The Mallett Brothers Band, was that night in Portland.

I was thrilled when I realized that both events were happening two hours from my home, in the same city and on the same day. The stars had aligned. My dog sitter was available. I had a place to stay, and my budget worked out to make it happen. I wasn’t going to let my depleted energy stores stop me.

I submitted my column early for the next week, knowing I’d have zero energy for my typical Sunday final edits. One of my editors was surprised that it was in so early and cautioned me not to “overdo.”  I reminded her that with IVIG treatments the next week, all I’d be doing was resting.

Having psoriatic arthritis along with LEMS and a plethora of other autoimmune diseases, my exhaustion factor is extreme at times. It frustrates me to no end. When I was younger, I was always on the go. Adjusting to days and weeks when I have no other option than to stay home and recover is a difficult reality.

Before my IVIG infusions began kicking in, it would take me weeks to recover from big events. I recall my neurologist saying more than once, when my weakness and exhaustion were extreme, “Yep, it sounds like you overdid and just need to rest.”

Sigh. Even Netflix gets boring after a while.

In recent years, I have found that by thoroughly enjoying my good days, my recovery days are made better with the memories of what made them necessary. On my not-so-good days, I will push myself to at least get outside with my dogs. I usually find that I feel better once I get moving.

It would be easy for my life to revolve around taking meds four times a day, and spending three days every fourth week at the infusion center. But it’s up to me to keep living my life to the fullest while the miracle of modern medicine keeps my muscles moving.

When we made plans to attend the concert, Jessica was concerned. “It’s going to be a long day for you.” I told her I had to seize the opportunity. It’s amazing to see the smile on my face in the picture with Luke Mallett after the show. I was exhausted beyond words. But my soul was filled with some of what makes my life worth living — enjoying live music with one of my favorite bands.

No matter what your illness throws at you, it’s important not to stop feeding your soul with what you love about life. Always keep the fire in your soul burning.

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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 Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.