So I’ve been off the grid, so to speak for over a
month now. I was hoping to come back on and be all “The world is my oyster,
I’ve kicked this disorder’s a$$!” Sadly, not the case. I was trying to will
this syndrome away, to no avail. I can still be thankful that I am about 20-30%
better, but no way near back to my old self. I have chosen to live with it and
do the best I can with what I’ve got.
I was thinking the other day that I need to call
my doctor to make an appointment to refill my prescriptions. That’s all they
really do for me, fill prescriptions. I guess it’s better than doing absolutely
nothing. So, I was thinking about what I’d love to say (but probably won’t
because I’m not the confrontational type) when the well-meaning doctor asks,
quite possibly in my opinion, the stupidest question ever asked by a doctor to
a patient with chronic illness…
“So how are you feeling?”…
My fantasy answer would go something like this:
“So, how am I feeling…how am I feeling? Let’s
start with last night as I tossed and turned because my lower back, joints and tendons are in so
much pain that it wakes me about every other hour, thus allowing me to get
about 2 hours of continuous sleep at a time. This of course, is provided I can
even get to sleep before I smell the coffee brewing for the next day with my
tinnitus going full tilt, yet another headache, and a head full of thoughts
about all the stuff I have to get done the next day but might not be able to.
I reluctantly wake the next morning sleep
deprived, but I make the decision that this is a new day with new mercies.
Hmmm…how am I feeling? Well, I’m just hoping I
can get through the day. As I roll out of bed feeling as though I’m eighty
years old (even though I’m half that), complete with aches and pains as if
somehow a Mac truck has sneaked into my room at night and run me over about a
dozen times, I hobble into the bathroom to complete my morning routine which
consists of peeing an inordinate amount of vermilion urine, possible diarrhea,
brushing my teeth that hurt because I clench them so hard at night (I’ve
cracked two molars now) hoping I don’t gag and throw up. I might need to
revisit the toilet numerous times in the next couple of hours with the big D
depending on the morning. Ahhh, what joy!
Actually, my mornings and afternoons go well most
days provided I don’t have to double up on my anxiety meds because I have to
drive somewhere or someone is coming over. Hopefully, I don’t get an adrenaline
rush (or what I believe to be an adrenaline rush, I don’t know for sure as no
doctor has ever looked into it) that leaves me in a pile of sweat on my cool
bathroom tile floor unable to move or lift myself up. These usually happen at
night though for no apparent rhyme or reason. I just lie there and have to wait for
them to pass, and then I need to sleep for about 14 hours. This is just about
the only time I get sleep, although I’d rather not have to go through the
feeling of death in order to get some sleep.
I hope that I can do up the morning dishes
without going into tachycardia, sweating profusely, tingling all over and ready
to pass out, hurl or both. I hope that I can do a few loads of laundry so that
my family at least has clean underwear. If I accomplish at least this without
chest pain, I consider it a win. If I can get through one day without thinking
I’m having a heart attack and wondering if I should call Big Handsome home to
take me to the ER, I consider it a win. Hell, if I get up in the morning, I
consider it a win.
I then retire to my bedroom where I spend most of
my time. Maybe I’ll try to draw in the attempt to relax and lower my blood
pressure that is slowly creeping upward. I would love to lie there in my comfy
bed and draw, but I can’t because as of late, my eyes don’t work well with the need of reading glasses now, the floaters swimming haphazardly through my field of vision and my
hands are to too shaky to draw a straight line.
A headache begins, but I’m used to those since I have one just about
every single day of my life. I’m hoping it doesn’t turn into “the” headache
that leaves me in a fetal position for hours and sometimes days.
I try to work with my kids on their schoolwork,
all from my bed complete with laptop and books strewn all over my coverlet
along with my two children and two dogs. Thank heavens for a king-sized bed. I
attempt to instruct my children in Geometry, Pre-Calculus and Chemistry all
with a brain-fog that leaves me not knowing which way is up.
Lunchtime is left up to the kids. At this point I
don’t even know what they are eating. For all I know, lunch might consist of a
pile of cheese balls. At least I know they will get a decent dinner as Big
Handsome has graciously taken over that task because I can’t stand long enough
at the stove to cook a meal anymore, and even if I did the tachycardia and
fatigue would leave me unable to even eat the meal prepared.
I’d love to do about 15 minutes of Wii Fit Yoga,
but choose not to as I know I will pay for it in spades for the next few days while my joints and tendons seem to be on fire. Might I have fibromyalgia?? Who knows, because yet again, no doctor has ever looked into it or entertained the idea that something else might be going on.
At dinner, I eat approximately ¼ of what I used
to eat and I only eat that because I have to. My stomach tells me I’m hungry
but my mind says that I want to hurl just at the smell of food. After I choke
down my meal, it’s onto the couch for the remainder of the evening. The
headache continues as does the tinnitus, at which point I have to turn on the
subtitles while attempting to watch a show because I can’t hear what is going
on. If the character is turned away from the screen while talking, I can’t read
their lips and am forever annoying my beloved family with “Huh???” “What did he
say?” thus the need for closed captioning as well as the volume turned up to about 50, which does wonders for the headache. Wish I knew what was going on with
all the hearing/tinnitus issues, but low and behold, no doctor has even talked
with me about it.
I then retire to back to my bedroom hoping,
praying that sleep will come, but all I have to look forward to is the same
type of day tomorrow, that’s only if I can get to sleep at all.
So… dear doctor…in answer to the stupidest
question ever asked, “How are you feeling?” How do you think I’m feeling? My
answer is…”Like $hit, practically every day of my life.” By the way, this is my typical day. I haven't even mentioned the bradycardia, swings in blood pressure, nausea, and so much more. I’d like to ask you a
question now, “What the hell are you going to do about it?”
And so, this is my triumphant return to the world
of chronic illness. Thankful that I am still here to battle yet another day.
I hope that I can share something more positive
in the near future.
