It
was a very full weekend for me. I was able to watch my Grandson play soccer,
and attended a family get together all in the same weekend. That may not sound like a full weekend to
most but to me it was WAY too much. I have been mostly housebound for a couple
of years now due to my Fibromyalgia. I am occasionally able to go out but it is
in a very controlled environment.
My
Fibromyalgia also includes Audio Sensitivity and Sensory Processing Disorder
SPD. Yes, I have a lot of issues don’t I? It seems even my issues have issues.
Lol (More on Audio sensitivity in another post - it is the main reason I’m
housebound.) For today’s post I will address the Sensory Processing. I believe there are a lot of people who
suffer from this and do not realize what it is.
Sensory
processing issues happen because the brain has trouble receiving, responding to
and organizing information from the senses.
In a nutshell, I become overwhelmed by too much stimulus. Loud noises
are my worst symptom, challenging to put it mildly. I am hypersensitive to
sounds, smells, light, flavors, textures, temperatures. They all agitate me to
some degree. This affects my focus. I have trouble following conversation going
on around me. At the soccer game I had trouble following the game. (I kept
cheering when the other team scored Lol). Between conversing with those around
me, the crowd noise, following what was going on with the game, it’s a good bet
it will lead me to a complete overload of my senses. It causes problems with
motor skills – I’m clumsy, I stumble or fall, slur my words, bump into things
and am unable to tell where my limbs are in relation to space (getting fork to
mouth). One of my first warning signals is I begin slurring my words. Next
comes what I call “stumbly” I am become clumsy.
We
all receive a steady stream of sensory information throughout our day. Most
people can “tune out” or “filter” that information. My brain struggles with
that. All that information coming in
overwhelms me, causing what I refer to as “Blue Screen”. Like
when the TV is no longer receiving a signal and the screen turns blue. That is
what happens to me when I am overloaded-overwhelmed. My brain and my body say enough already and
it switches off. I assume it’s to let my brain cool down. Sometimes it’s for a short time, like when
the power flickers. Other times it’s for a much longer period - like
weeks. When I’m like this I call this
Blue Screen or Fogged In.
I
am hypersensitive to noise. I hear things most people “tune out” like the
refrigerator running for example. I
sometimes have to leave the room because it overwhelms me and my pain shoots
through the roof. Common sounds are painful (I’m often asked if it hurts my
ears. The answer is no. It translates into overall body pain). My husband, John, doesn’t even notice the
sound, he’s “tuned it out”.
So
back to my weekend… Saturday, was the soccer game. I find when my senses have
been overwhelmed if I come home and immediately go to my room and lay down it
helps my “jets cool”. Darkened, quiet room, in bed, for an hour at least will
sometimes (I say sometimes because just as often this will not work) begins the
restorative process.
Saturday,
I came home and went right to bed. I knew it was going to be a bad evening,
because the pain was climbing on the way home. I had trouble understanding what
John was saying. I definitely was not coping. However, after my “quite time” I
felt a little better. The pain has downgraded marginally and I was able to
track with what John was saying. I had
Painsomnia, I was able to get about 5 hours of sleep – not bad for the
afternoon activities.
Sunday,
was the family get together and I broke my number 1 written in stone rule. DO ONLY ONE
ACTIVITY per week. I analyzed where I was Sunday morning and knew I should stay
home because my pain was high and my coping was low. But, I had been looking forward to this for a
couple of months and decided to go but modify my attendance. I went late and left early. I wore my noise
cancelling ear buds. I took my cane because I was “stumbly” before I even left
my house.
I knew I put myself in a
flare. I knew there was a good chance of
this when I decided to attend on Sunday.
I counted the cost and decided it was worth it to attend the family
event.
Monday,
I woke to a major flare. It was a mostly stay in bed day. Pain was extremely high. Weather-brain
forecast was dense fog. A “Socked In” kinda fog. I went to put in a load of laundry and
couldn’t figure out how to turn on the washing machine. I walked away and went
back to bed. For dinner, I was helping John and couldn’t figure out how I was
going to warm up the cornbread. (Note: it was already cooked I just needed to reheat
it). I couldn’t decide what to put in on. A plate, a pan, or just stick it in
the oven. I finally worked out that I could microwave it and placeed it on a
plate. Then I couldn’t figure out how to turn on that tricky beast. All those
key pads with numbers to press - Holy Kamoley - I was in a bad place.
So
this is my life. I have learned to assess at all times. What’s the temperature?
What’s the noise level? Will there be people I need to converse with? Will I need to navigate through social
interaction? Will I be able to remove myself from what’s overloading me or will
I just need to try to cope my way through it? Will I be putting myself at risk
walking or moving around? Assess and
reassess. You may be asking about now “was it worth it?” Yes, it was worth it!
I got to leave the house 2 times this weekend. I got to spend time with the
ones I love most in this world. I did “pay for it” but I knew I would before I
went. The only question really was how much would it cost me. I had already
planned on dialing back the beginning of the week to allow for recoup time. In
looking back the equation is 2 afternoons out = 4 days recovery. As far as
flares go it was really a mild one. I have found it is all a balancing act. I
am grateful for the time I had with loved ones this weekend. Trying to count it
all JOY.
Do you suffer from any of these symptoms? Leave me a comment.
These are a few resources I have found helpful. They are are also in Resources located on the top bar.
Starlanyl,
Devin, and Mary Ellen Copeland,2001, Fibromyalgia
& Chronic Myofascial Pain A Study Manual
www.TheBlueScreenBlogger.blogspot.com
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