Monday, October 18, 2010

A little known fact

I’ve always wondered if I should address this in my blog or not. I don’t want sympathy, but it’s just so nice for others to know what I face each and every day. While I am such a strong person, daily I fight with something. About seven years ago, wow I can’t believe that it has been that long, after extensive testing I was diagnosed with Chronic Fibromyalgia. At that time it seemed that I was the only person that knew about the disease, er condition, hmmm I really don’t know what to call it. Come to find out there are many people living with the same condition or know someone else that is.
There are days I just simply struggle. I truly believe that it is the reason I am who I am. I believe that I consume myself in to so many projects so that I don’t focus on the pain. A few years back I saw a doctor about becoming a part of a research drug trial… He has focused on Fibromyalgia for more than twenty years, and at the end of my consultation I was told that he has NEVER seen a patient with a case as severe as mine. While that is not a good thing, it is nice to know that someone understands what I am going through. It’s one of those until you experience it, or study it you really can’t grasp what is going on. I still don’t think my husband understands the extent of what I am going through, but at the same time I can’t expect him to, nor would I want him to. While most people are affected and have flare ups when it’s cold I simply cannot function when I am overly hot. Even in the dead of winter I sleep with the fan on high so that I don’t get so hot. I guess I should back up, incase you don’t know what Fibromyalgia is:
Fibromyalgia:
You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

My husband found this poem for me and it spells it out so well…
WHEN YOU SEE ME ON A "GOOD DAY" I MAY LOOK AS IF NOTHING'S WRONG,

BUT I, MYSELF, AM VERY AWARE THAT THE ENERGY WON'T LAST LONG.

YOU MAY THINK THAT I AM LAZY, OR JUST DON'T LIKE TO TRY,

OR MAYBE I AM JUST DEPRESSED, WHEN SOMETIMES YOU SEE ME CRY.

YOU MAY NOT UNDERSTAND ME, IT'S NOT EASY TO EXPLAIN,

THE STRUGGLES THAT I SO OFTEN ENDURE, AS I LIVE EACH DAY WITH PAIN.

PEOPLE MAY OFFER THEIR OPINIONS, THINKING THAT I JUST NEED SOME ADVISE,

YET THEY DON'T REALLY COMPREHAND, ALTHOUGH THEY ARE TRYING TO BE NICE.

WHAT FOR SOME MAY BE SO EASY, IS ALMOST IMPOSSIBLE TO ME.

BUT BECAUSE I MAY LOOK HEALTHY, MANY AROUND ME FAIL TO SEE.

PERHAPS IT SEEMS THAT I'M SLOPPY, IF I WOULD ONLY TAKE MORE PRIDE,

IT'S SAD THAT MANY DON'T STOP TO SEE THE PERSON WHO IS INSIDE.

PLANNING THINGS IS SO HARD TO DO, WITH EACH DAY UNCERTAIN FATE,

THE BEST THAT I CAN DO IS TRY, AND OFTENTIMES I HAVE TO WAIT,

LIFE CAN BE SO STRESSFUL. EVEN WHEN YOU HAVE YOUR HEALTH,

MANY PEOPLE CAN'T EVEN IMAGINE GIVING UP THEIR DREAMS AND WEALTH.

WHILE SOME PEOPLE MAY WORRY HOW TO FIT EVERYTHING INTO EACH DAY

OTHERS OF US MUST STRUGGLE TO EVEN FIND A WAY.

SO OFTEN MISUNDERSTOOD, SOME SAY THAT IT MUST BE IN MY HEAD,

YET THERE ARE DAYS THAT IS TAKES ALL I HAVE TO EVEN GET OUT OF BED,

YOU'D THINK THAT IF ONE IS WEARY, THEN WHY NOT JUST TAKE A NAP,

BUT THE FATIGUE AT TIMES IS SO SEVERE, THAT NOTHING SEEMS TO HELP.

IF EXERCISE WERE THE ANSWER, I WOULD JUST MOVE INTO A GYM,

BUT INTOLERANCE AND UNBEARABLE PAIN MAKES IT DIFFICULT TO STAY TRIM.

THAT'S ALRIGHT JUST TAKE A PILL, MEDS CAN ALWAYS DO SOME GOOD,

HOWEVER, SOMETIMES THE EFFECTS ARE FAR WORSE, OH, BUT HOW WONDERFUL IT WOULD BE IF I COULD!

LIVING EACH DAY FIGHTING DEFEAT, KNOWING THAT YOU CAN'T GIVE UP AND QUIT,

EVEN THOUGH IT GETS HARD TO DO, JUST TO FIND WAYS OF ACCEPTING IT,

I GUESS IT WOULD BE A BETTER THING, IF THERE WERE A LITTLE MORE SUPPORT,

EVERYONE LONGS FOR ACCEPTANCE AND LOVE AS THEY KEEP THEIR LIFE IN SORT.

IF I COULD MAKE THE WORLD AWARE, HELP THEM TO SEE THINGS IN A NEW LIGHT,

BE CAREFUL ON WHAT THEY BASE THEIR VIEW, THAT THEY MAY RECEIVE A NEW INSIGHT.

THEN MAYBE WHEN SOMEONE ELSE COMES ALONG WHO IS GOING THROUGH SOMETHING UNKNOWN,

THEY MAY NOT FEEL SO HOPELESS AND SCARED AND WILL KNOW THAT THEY'RE NOT ALONE.

WHETHER IT BE A TERMINAL THING OR SOMETHING CHRONIC WITH NO KNOWN CURE,

THERE ARE MANY PROCESSES THAT WILL BE FACED IN THIS WE CAN REST ASSURED.

THE GRIEVING OVER LOSS IS HARD, WHATEVER THE LOSS MAY BE,

WHAT MAY BE JUST A BUMP FOR YOU, COULD SEEM LIKE A MOUNTAIN TO ME.

EVERYONE RESPONDS SO DIFFERENTLY, WE ALL HAVE OUR OWN WAYS TO COPE,

BUT THE ONE THING THAT WE MUST NEVER DO IS BELIEVE THERE'S NO HOPE

Well that’s a little known fact about me… I’m not a super mom or anything, I just keep busy so that I can enjoy every moment with my family… They are my world!

God Bless,

Amanda



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