galiger's Journal

I originally joined Daily Strength because I was becoming frustrated with the lack of understanding of friends and family regarding having Fibromyalgia.  I figured it would be a good place to rant and complain and have a comradery that I could not seem to find anywhere else.

But as the days continue, and I read the postings and the topics, I can't help but feel even more frustrated and concerned.  I had no idea people were taking upwards of five medications- including narcotics, to manage their FM, that people can't get out of their homes, or work a full time job, or they loose thier marriages and relationships over this disease.  

And here I am.  On no daily medications- only Flexeril and Aleve as needed, I work a full-time night-shift job that is somewhat physically tasking, I can exercise and go out with friends, I have a loving relationship with my boyfriend. Suddenly, I feel like a complete douche-bag for even wanting to rant and rave.  Who cares if I'm in a little pain?  Who cares if I have to give up a little to do something else? Compared to others here- who have this same condition, I'm okay, I'm doing fine- in fact, to some, I'm doing fantastic.  What right do I have to complain?

So this place, that I thought would be a place I would find understanding and support has just managed to make me pissed with myself.   

Then there's the 'what-if' game (as if I don't play it enough already).  Like, what if I'm okay now because I'm still young?  Will it only go downhill from here?  What if the medications, the disability, the failed realtionships, the loneliness, the desparation, what if all these things are my future? 

And moreso, reading the forums and looking at the websites, it seems to  become a fixation.  I'm suddenly worrying more about my condition, concentrating more on the pain and the diagnosis.  I find myself bringint it up in conversation, or thinking about it more and more.  Trying to remember when the pain all started, figuring out what makes it worse, what makes it better, what I can do, what I can't do.  I don't want it to comsume me or my life.  I don't want the support groups, the doctor's visits, the websites and the googling to bcome my hobby.  I don't want mywhole life to be about the fact that my brain probably doesn't work right, and the fact that it probably never will.

I makes me angry as hell.  I never used to say I didn't want children until I was diagnosed with this.  My mother has it.  I have it. It may not be technically genetic, but who's to say any child of mine won't have it.  Better yet, will I be able to raise them when I feel like this?  Will my spouse resent me for not being able to do it all?  Will I resent my children for not understanding?  Or myself, for having to explain 'mommy's sick'? Will my children resent me because I won't be able to be the fun happy mom because I just con't hide the pain well enough? 

Lord knows, I resented my mother for it.  I resented her for how she would forget our birthdays, or sleep for days, or how I had to pick her up from her job because she was too dizzy and tired to work.  Or how I would have to spend hours with her in the ER because she was in so much paina nd no could tell her why.  I even blamed her for dad leaving. I was clinically depressed for years, and even comtemplated suicide because of the stress and the sadness and the pain. But I couldn't do- not because I was scared, or because I wanted to live, but rather because I felt that my mother needed me, I felt too guilty to leave her alone.  And I resented her for that too.  That I couldn't even kill myself because she was in the way.

Now I have fibromyalgia.  And I don't want anyone to resent me the way I resented her.    That's the thing about this disease- it will make you absolutely miserable.  It can rob you of your energy, your job, your house, your relationships, and yet... it's not enough to kill you, or outwardly affect you.  No one can see it.  There's no medical bracelet, or ID card.   There's no reason, no cure, no badge of honor. 

As fibromyalgia sufferers, all we have is comiserating.  Bitching. Anger.  There's no gold star for surviving it. Hell, you say the word "fibromyalsia" and people roll their eyes.  Pharmecutical companies have turned us into a gimmick, the disease of the week.  Remember a few years ago when they "discovered" Restless Leg Syndrome .  It was everywhere- in magazines, in newspapers, on the News, on Oprah, everywhere.  Before that was Chronic Fatigue Syndrome, and before that, something else. In a few years time, some other disease will take it's place.

Forgive me.  I'm just angry.  I'm not even going to blame it on the pain.  That gets old, fast.  And I'm tired.  I wish I could go back to being blissfully unaware.  But it was always there, the Fibro.  I had 'growing pains' despite hardly gaining half an inch.  A hike with the family or gym class was always exausting.  My bad would still hurt even after lying in bad all weekend. The constant aches and pains.  I guess it was assumed it was part of being a premie (my twin and I were 2 months premature) or gallbladder disease or being overweight or my depression.  Then I had my gallbladder removed, entered my 20s, found some happiness and I lost 60 pounds. But the aches and pains and tiredness was still there. And got worse. 

I hate this disease, the uncertainty of its prognosis, this lemon that no matter how I try, will not make it into lemonade.  I've always tried to look at the bright side, and with this, I just can't.  What, be thankful for good days?  Why can't I be like everyone else, and have most days as good days? Hell,most people don't even use that terminology- "good days" and "bad days", they're just days, that they just live life.  Meanwhile, I'm lying on the couch wondering how many dishes can I wash without risking sapping my energy for the rest of the evening.

Simply, I'm mad as hell.