i recently had a friend text me and say,
i’ve noticed when your having a hard time you withdraw...said friend is
also a therapist and at times will analyze and call me out. but i don’t mind,
she’s always right, and she always helps.
truth is i have been in a funk.
i have been in limbo with my own health and
lungs status. two full weeks where i was possibly going to be admitted. back
and forth (educated) decisions resulting in 'well let’s try this’, ‘it could be
this’....all of which have been correct and i am seeing improvements. (yay.)
however, during that waiting period it is
hard to be hopeful. actually, it's easy to be hopeful, but i hold back feeling
that hope. because if i brace myself, the sting isn’t as bad when they say i "need
to come in for a clean out.” so, i kept all my bags packed. i lived out of
suitcases for two weeks in my own home. i didn’t want to unpack just to turn
around and repack the next day.
the CF community has seen many difficulties recently.
on being a key Cyster (@claire.wineland @clairesplacefoundation) of our
community passing in an unexpected way. a woman of much influence and
dedication to speaking openly and positively about our disease. she is a
beautiful, strong light and it stung when her light left to shine somewhere
else.
i watched as multiple friends were being
admitted. it almost felt like there was a plague.
my psyche and mental health were struggling.
anxiety, frustration and depression.
i simply am frustrated it’s not an equal
ratio of my efforts and results. quite frankly it doesn’t even feel like a 10:1
ratio; efforts:results. this can be overwhelming. it can be tiring, in fact i
am tired. everyday. all the time. i still take 2-3 hour naps daily. what used
to be an indicator that i had an infection brewing, now seems to be part of a
new normal. i only have about 5 hours of functioning before my body is like,
“no. no more. i need to recharge if you want me to go on.” it’s like i live two
‘mini days’ in every 15 hours i am awake.
anyway, i kinda took an unintenional break
from everything. commitments fell through. i haven’t written since july. i’ve
been inconsistent in my social media presence, as well as updating you. you,
who are so invested in mine and my families health. i appreciate you dearly,
and i am sorry.
sometimes i am envious of my friends who
have lung transplants. they have a new light to them. a look of relief. a
release from the demands of frequent hours of daily lung treatments. i know
lung transplantation by all means is not easy, and is not a cure. it’s
basically trading one disease for another. learning to manage something new and
something as grand as foreign organs in your body is no easy task. but
sometimes i just want to breathe. i want to be able
to laugh without going into a coughing fit.
i want to be able to rough house with my kid at any moment; instead of
responding to his plea, “let mommy do a treatment first, then i can wrestle”.
only to then be able to participate a few short minutes before being depleted.
guys this is open, this is raw, this isn’t
my usual postings or my usual mental view. i have been in a funk. but this has
been my truth. i am human. we are all human. i have bad days. we all have bad
days.
but during my bad days, i have had many
hours to reflect and my conclusions are often the same. gratitude. sure, i
might not be seeing a 10:1 ratio of my efforts to improve my lung status, or
even maintain where they’re at, but i AM alive. i AM breathing, even though i
am also coughing. i AM watching my son grow up, even if the view is often while
sitting next to my treatment machine. i AM making memories with my husband. i
am here. and frankly what more could i want? nothing. my greatest blessing, my
greatest gift, all of my gratitude lies in the fact that God does here my
prayers...i am still here on this earth, still breathing, and that is a luxury.
Xx,
M
