I wrote this piece almost 6 months ago, and I find myself in a very similar place today. I’m tired. But I’m not just suffering from the fatigue common to so many Lymies, I’m tired of putting on a brave face. I’m tired of smiling when I hurt so much. I’m tired of downplaying all my symptoms to folks who ask how I’m doing just so I don’t sound like I’m complaining, or that I’m a hypochondriac, or worse. And truth be told, I’m tired of hearing my own voice whine about the pain, and the GI issues, and the brain fog, and the exhaustion. Most days, I attempt to force myself to believe I”m doing better, and I’ll be ok today.
And then there are days like today: when my daughter will come in for a hug, and I push her away because I ache so much all over that the mere weight of her arms around me causes more pain. And o I have to follow her into her room, as she’s crying, and then I cry, and apologize profusely that her mother isn’t well. And so I sit here, blinded partly by tears and partly by rage, writing.
And so here it is:
When nobody is watching, the smile fades from my face.
When nobody is watching, the spring in my step disappears, and I trudge along painfully.
When nobody is watching, I give myself permission to grimace from the pain of simply moving.
When nobody is watching, my mask, indeed my entire costume, comes off.
Trying to stay positive in the face of a chronic illness can be hard, and I typically don’t let many other around me see my struggles. Friends will inquire about my well-being, and I usually give some spiel about how I’m so happy to have a diagnosis, or a doctor who listens, or that I can actually afford treatment when so many others cannot.
When I’m at my worst, at most I’ll just say I’m having a bad day, or something to the effect of “two steps forward, one step back, doncha know!” and feign a weak smile.
The truth is, I’m just not feeling well lately. I’m feverish and achy again, and the fatigue can be almost overwhelming. There is so much I want to do, dreams that have been reignited and begging to be fanned into a full flame… And I sit here, betrayed by my body, wracked with an infection I can’t seem to beat.
So if you really want to know how I’m doing, don’t ask. Just watch me when I think no one is around…