A constant stream of announcements interrupted my attempt at dreams instead, but the sun warmed my chilled body. For a short time, sunbathing in blue jeans and a sweat shirt carried me far from the hustle and bustle.
But as the day wore on and flight after flight left us behind, I grew anxious. I didn't mind spending hours in the airport as a standby passenger... but I was out of medicine. Completely out. And I had no idea how my body would manage another day of travel without it.
It didn't help that when I packed my medicine for our trip, I forgot to add three days of my morning dose of Effexor. With my system already somewhat out of whack, thoughts of driving to LaGuardia Airport, sleeping for only a few hours, and trying another early flight in the morning made me slightly mental.
You see, my body shuts down without medicine. My legs get stiff and a fatigue induced nausea leaves me desperate to lie flat. My thoughts turn to mush and my eyes struggle to keep images from splitting in two.
So while I enjoyed our jaunt through New England and time away with my husband, the reality of my illness hit me head on as waited in the airport. And I knew I couldn't let Mitochondrial Disease Awareness Week end without a proper acknowledgement.
Ironically, I've been trying to finish this post for two days now. But after the long day in the airport that led to a 1:30 am Friday morning arrival at home, my brain has been shutting down and my body demanding naps, repeatedly.
I found a link on the web that claims today is World Stay in Bed Day in honor of Mitochondrial Disease And while I hope to go visit my grandfather who just moved here from Pennsylvania, there's a good chance I'll end up back in bed again as my body slowly recovers from our crash landing at home.
I spend more time there than you might imagine.
For my body simply doesn't power like yours. I look fine on the outside, but inside, my batteries don't fully charge. If I live within carefully constructed boundaries, I function OK. When I go for more, I wind down and crash.
While it's annoying for me, there are a lot of children who battle this disease from birth. Without the cellular strength to simply hold their internal organs together, they require feeding tubes, breathing machines, and mobility assistance. It's brutal, costly, and heartbreaking for the families involved.
But we fight to live with hope.
It's the only way.
But it's amazing how far hope carries us.
"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint because God has poured our his love into our hearts by the Holy Spirit, whom he has given us" (Romans 5: 2 - 5).
I wrote the song that plays in the back ground of this video, although they only used the accompaniment track until the very end. I think it sounds clunky without the melody, but the smiling faces make a watching worth while. You can hear the complete at this link: Hope Flies
photo credit: Dip Pen via photopin (license)
photo credit: via photopin (license)
photo credit: 066:365 - 07/05/2012 - Nap time via photopin (license)
photo credit: Power Nap via photopin (license)
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