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May
Fibromyalgia Awareness
May is the month for fibromyalgia awareness. Many
of us are aware of it all the rest of the time as
well. It touches the lives of family, friends and
co-workers. I share my experience in hopes of
helping others who are affected in some way by
fibromyalgia.
Imagine waking up in the morning after a short,
restless sleep. Your body aches like the flu is
coming on, yet there is no flu. You can't move your
head without feeling stabbed in the neck, and your
lower back aches when you roll over.
You get out of bed and take a pill for pain,
have a little decaf, and wait to feel like a human
being. In a couple of hours, you're already
exhausted and need to rest. On top of that, you
feel kind of useless and guilty for not
accomplishing nearly as much as you feel you ought
to, and this makes you feel sad. Welcome to a day
in my life when fibromyalgia is in full bloom. It
may vary from person to person, but one thing in
common is pain.
I've always been tired, but figured it was from
keeping house and chasing two little boys plus
sometimes daycare kids around all day without a
break. Eventually my fatigue was diagnosed and
treated as depression. I couldn't keep up with the
kids very well anymore, and was thankful that they
were no longer needing me to do everything for
them. I could take a nap once in awhile, or sit
down while they played without having to jump up
every couple minutes, as toddlers seem to require
parents to do.
I think I was supermom, at least for awhile. But
there were a couple of turning points that told me
I was slipping. My youngest had lost a tooth and
put it under the pillow for the tooth fairy. Both
boys ALWAYS got a silver dollar for each tooth (we
went broke when my oldest had to have 13 surgically
removed all at once, as he had supernumerary teeth
like a shark). But this time the tooth fairy messed
up and didn't get up in the night. The next
morning, the poor little guy checked under his
pillow and my heart sank. I forgot. I failed.
A similar occurrence was when one son had an
awards ceremony at school that I was to attend. I
forgot, and he called me from his teacher's cell
phone, almost crying. I threw on some clothes and
rushed there in time to see him get his award.
I feel that I failed my sons in so many ways.
When they were older and their dad and I were split
up, it seems that so many of the times I tried to
spend with them I was having pain... really
horrendous pain in the belly. So I'd just sit with
them and talk. I was so depressed and exhausted, I
couldn't "parent" them the way I feel a parent
should do. Anxiety.. guilt.. What was wrong with
me? My sons were the most important thing in my
life!
Fibromyalgia can cause depression and anxiety.
I've been depressed on and off since I was a child,
and had some strange pains in the ribcage. Those
were diagnosed as "growing pains" when I was about
ten years old. Sharp, stabbing, doubling over pains
were for growing? I was an overachiever, a
perfectionist... so maybe it was stress-induced.
Through my teens and twenties, monthly cramps were
incapacitating, causing dizziness and being unable
to stand. The only relief was bed rest, massage and
heat for about a day and a half. I got lectured at
school over my absences, and how that's not a valid
excuse to stay home. I was taken to the doctor when
I passed out at school, and was told that I "passed
out from pain" and released. At nineteen, my
fatigue was diagnosed as "weakness illness"
(whatever that is) and was inappropriately put on
anti-depressants that made me sleep 14 hours at a
time. I missed too much work. In my thirties I had
migraines where I felt my head would explode. Some
days I'd feel like there was hot acid rushing
through my veins. Again, dismissed as
depression.
Back in those days, it seems that fibromyalgia
was not recognized at all. Thus, the patronizing
and dismissive diagnoses of "growing pains" and
"weakness illness" were made.
Today, fibromyalgia is what's left after they
rule out everything else. I had just about every
test imagineable.
There is no cure, just management of
symptoms.
On a good day, I can get some things done. But
if I do too much, I pay dearly the next day.
On bad days I have to ration my energy out to
basics, and take naps. The dust will wait.
Prioritizing is important, and things-to-do lists
are mandatory but flexible. I find that I'm
becoming more forgetful all the time, and that does
scare me.
There are no miracle cures.
As far as I know, most fibromyalgia sufferers do
not want pity. But we'd gladly accept some help
with the housework, cooking, a shoulder massage, or
just a friendly visit.
Family comes first, even if it's only a phone
call or email. There's never too much pain to hear
news like my son(s) buying a new car or getting a
promotion at work, or to have time with my husband
or sing with my grandson.
With parenting, love is not enough. But
sometimes it's the best one can do.
Fibromyalgia Awareness Day - May 12,
2010
Fibromyalgia is a chronic disorder characterized
by widespread musculoskeletal pain, fatigue, and
multiple tender points. It may cause sleep
disturbances, morning stiffness, digestive
disorders, anxiety, TMJ, cognitive or memory
impairment, visual disturbance, and other symptoms.
The cause is unknown.
©2011, Mary Lou
St. Lucas
* * *
Mary Lou St.
Lucas is a former stay-at-home mom who has
participated in custody and divorce-related support
groups. She often speaks out through impassioned
letters to local newspapers regarding issues
affecting quality of life for children and
families. She has experienced divorce, including
the heartbreaking decision to give up daily contact
with her two sons for what she believed was their
best interest at that time, as well as the societal
stigma attached to being a non-custodial mother.
She emphasizes the importance of kids having BOTH
parents in their lives on a regular basis, even if
the parents cannot or will not be married anymore.
She hopes other parents will see that there may be
alternatives to the standard custody arrangements,
depending on the individual situation. She writes
from her perspective of today instead of revisiting
and dwelling on the painful emotions of her past.
She strives to live a full life in spite of a
recent diagnosis of fibromyalgia, and believes a
sense of humor is mandatory. mlstuff.blogspot.com/2007/08/male-bashing-t-shirts.html
or E-Mail.
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