From ME To You

Lost

 

By Lisa Alioto in Herald Review.

 

Myalgic encephalomyelitis (ME) is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. What does that really mean? Life with ME is ever-changing, painful in every way.

An abbreviated view would be to share a small piece of a day in my life: Calculate. Pace. Adjust. I do this daily, minute by minute. I calculate based on an ever-changing, unknown variable: What will my body allow me to do today without costing me tomorrow? One tiny misstep, one small miscalculation, and I lose tomorrow. Sleep. It’s of no value to me. I mean that literally. I get no restorative value from it. I wake up more exhausted than when I went to bed. Yet I still crave rest and the ability to lie down. I feel pulled to it constantly.

Daily activities are a careful balancing act. On a “good” day I can do a few things around the house. But if I accidentally overdo it, once again, there goes tomorrow. On a typical day, beyond the exhaustion, for me it’s nausea, chills, noise, light and temperature sensitivities, memory loss, and so much more. It’s different every day and for every one of us. If I go too far, if I make one wrong decision, I suffer a flare-up. It’s that simple. A flare-up is all of the above on an extremely elevated level. I must rest, sleep, and by no means exert any energy for at least a day, or more. Even chewing food or keeping my eyes open become too much.

 

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