What Did You Do? Wednesdays

Calling all fall fanatics, adventurous organizers, exercise procrastinators, perfectionists unable to make a move unless they're certain it will turn out with ultimate precision, messy Marvins, and any other category you put yourself in ~ stop by each Wednesday and share what you did that week. Big things, little things, adventurous things, nothin' much things, somethin' special things....doesn't matter.

Share your just one thing on What Did You Do? Wednesdays!

Thursday, October 22, 2009

Hoping for Help

I am exhausted. Not your normal exhausted from heart-beating exercise or strenuous work. It's not exhaustion from staying up waaaay too late, or from burning the candle at both ends. I am exhausted every day, all day. When I am forced to open my eyes each morning, I want to cry. Most days I do....in time. I am tired beyond your wildest imagination no matter how much sleep I get. When I wake, I feel as if I've been dragged across the country & back by a team of wild horses. It's a debilitating fatigue that makes me feel like I haven't slept in decades even though I get a very reasonable amount of sleep. It's what's called "nonrestorative" sleep. It's fatigue that causes my thinking abilities to fail, causes me to stumble for words, causes me to be short-tempered & takes from me the productivity & energy that's required to live a normal life. Even the smallest of tasks can seem insurmountable.

A few times a year (yes, I said year), I experience a fleeting 5-30 minute reprieve, but that is all. In that glorious escape, I imagine life as I had pictured it, life as I see my friends with 3, 4, & even 5 kids sailing through, some even working full-time. I wonder all the time how people do it, but then I am reminded how others might cope when I am given those few flashes of a lifted fog. Life seems reasonable then.

There is nothing reasonable about fibromyalgia & chronic fatigue. Nothing at all. A new tv commercial is just starting to air here promoting this web site. http://fibrocenter.com Some of the folks on this ad shed tears. They look desperate to me, & I know they are. They are absolutely desperate to find help for a syndrome for which there is no cure. There are only speculations about what might cause it, & even many doctors don't accept its realism. Never mind the insurance companies, coupled with the health care providers who either make fibro/CFS sufferers jump through hoops or flat out deny assistance to seek help. (My, my, my ~ what a splendid example of how inefficient our health care system is.)

I have been robbed. Robbed of my life in many ways.....of the Mother I want to be, of the physical activities I want to participate in, & of the things I want to do both personally & professionally. I live in a mental fog. Literally. Fibromyalgia is often coupled with chronic fatigue. Well, I got them both....badly. My body hurts, literally, from head to toe on a regular basis. It's a gnawing pain that would make even the strongest opponents go out of their mind at times. My life-robbing, physically painful existence is one that I can only hope I don't have to endure forever. Like other sufferers, I hope for a cure.

The research I have done on current options has been thorough & exhaustive (no pun intended). I have been fortunate to undercover the work of Dr. Jacob Teitelbaum. He, himself, has fibromyalgia, & has fought his way back to health using a variety of treatments. I am hopeful that the work he is doing will, in time, lead the fibro/chronic fatigue community to receive the complete answers we deserve. Dr. Teitelbaum will be featured on The Dr. Oz Show, this Friday October 23. I am anxious to see this segment.

I will be posting miscellaneous information about fibro/CFS as I go along. So, even while this nasty syndrome has its hooks in me, I will still prevail. I come from hard-working, determined, strong stock & I will not give up. I want to do too many things in life; I want too much for my children.

1 comment:

Tina said...

Hello - I too have Fibro. Was diagnosed about 14 years ago and until the last 6 months wasn't on pain blockers. (GabaPentin, Now that's a GREAT drug). Are you familiar with the National Fibromyalgia Association Fan page on Face Book? It's great. You can go there knowing others know & understand how you feel. Check them out. I was thinking about starting up a Fibro Page on my blog - just don't know if I want to combine it with my family literacy theme or keep it separate.

I hope you get to doing better soon - Tina "The Book Lady" www.familyliteracyandyou.blogspot.com


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