Just an effort to inform and help others understand.

[lovingmommy]

Hey all...let me start out by saing if I repeat myself at all...I am sorry.  If this gets long, I am sorry.  I just feel like I should be some sort of ambassador or something for fibromyalgia and what better way to reach people than through cafemom!!! seriously.
First of all...if you have a friend or family that you live with or are extremely close to...I suggest getting the book...Fibromyalgia for Dummies.  It has excellent resources and information and speaks on a Normal Person's knowledge and level of understanding.  I plan to inform as many people that will listen to me as possible on fibromyalgia.  It is a very common illness but even though it is so common very little as far as prevention and treatment and public knowledge is known about it.  I am always dumbfounded when I come across people that say, "Oh fibromyalgia huh...I always thought that was just a crazy person's illness since no tests show proof."  Or ...fibromyalgia is a complete excuse for people to be lazy.  Here is what I have to say about that to the nay sayers...I pray you never EVER get stuck in my position.  I hope you never EVER have to tell your three year old and your one year old that you have to stay off of mommy's lap becuase it hurts to bad to have you hug me....yes...even something that is supposed to show love canhurt a fibro sufferer physically and when we have to say no to affection...it not only hurts us physically but emotionally. 
There are even days when I can't focus on a conversation.  I have had to say to my friends while talking on the phone..."I'm sorry I am in a really bad flare and am having a really hard time understanding everything you are saying...and I want to be able to hear this story, or be able to give you my attention 100 percent so can we put this off until I feel a little better?"  Do you know how hard that is...as a friend, to not be there for friends because even listening is too much damn work...yet I want and expect to be able to talk to people and have them pay attention to me when I am trying to inform them of my illness.  A double standard...to some people yes...but to me...I still want to talk to my friends but my illness is making it extremely difficult and I have to have them repeat themselves several times and too me that's not a very good friend...so it's just better to be honest up front and let them know that I would love to hear their story, just a different time.
There will also be times when I tell you that yes I would love to go to lunch, shopping, to your house to visit, etc....and have to cancel at the lastminute because the simple fact is fibromyalgia is just to unpredictable.  Not to say I don't know when I am going to have a flare because sometimes I feel one coming on, but other times, it will just come out of the blue and BAM...I am down and out for the count.  Please don't take offense to this, I am not doing it because I don't want to but becuase I simply am too exhausted, sore and worn out to do anything, much less get out of bed...which during the week I atleast have to do that....and take care of a 1 and 3 year old.  I am sorry if I have ever let you down and would love to tell you that it won't happen again, but the truth is...it probably will happen again...more often than I would prefer.
I can't even be intimate with my husband unless I know that I don't have big plans for the next day because that causes me to hurt for anywhere from 1-5 days afterwards...kinda puts a damper on bedroom fun and spontenaity.
A lot of days I sit in my chair while my kids climb all over me and I am doing all i can to hold in the tears because it hurts so bad and every little foot or hand print on my stays with me for the next 2-5 hours and feels like somebody wacked me with a sledgehammer. 
When my period comes, I am down and out.  I flare right before adn through the first few days of it....so on top of endometriosis pain, I have all over pain and foggy thinking and fight to get through each day.
My parents used to tell me that dynamite comes in small packages and I was stronger than people took me to be because of my height....I guess God thought that I was dynamite.  He must have because only something with the strength of dynamite could endure the days I do.
****note.  to kind of get an idea of how fibro feels.  Take ten clothespins and put them on each of your fingers sideways, see how long you can leave them on, and then think to yourself...Sarah (or you can insert any other loved one suffering from fibro)deals with this kind of pain ALL OVER her body, If you leave them on longer than 10 minutes I give you credit.  I have to do it all day.  Granted I get to take a pain pill here and there....but that only takes a few clothes pins off and if the pain pill wears off...they are all ten back on.
***another way to try to explain how fibromyalgia feels is to imagine back your worst flu you had ever had, and how hard it was to even get up out of bed to go potty or what not....remember how bad your body ached?  How you got hot and cold?  how it seemed to hurt all the way to the bone....I have a sense of " the flu' with my symptoms...thankfully fibro is not contagious and you can't catch it from being around somebody who has it.

[katandtysmom]

Mar. 25, 2009 at 12:27 AM

I made this popular because you explained fibro to the T, I feel the same way as you and  a lot of other people.. the only difference between you and me is my doc gives  me muscle relaxers  and not pain pills,,, some days i wish I had one the size of my pillow.

Love ya more:  Cindy

[lovingmommy]

Mar. 25, 2009 at 10:56 AM

Thanks katyandtysmom....I really think more people should try to know atleast a little bit about fibromyalgia.  I also get the muscle relaxers for my back...but for my all over pain I have to have a pain pill or I have no quality of life.  I am miserable and just lay around like a bump on a log in the way of my family trying to go on with life. 

What most people don't understand is that even though I take a pain pill, they don't knock me out like they do normal people, they help me to go about my business and be a mom and a wife.  I am  so tired of people associating how pain pills affect them, and then thinking out loud that I am a pill junkie or an addict.  I don't just pass out a few minutes after taking them, I only take them as directed, and I don't abuse them, but to get through my days, I have to have them or I can't move, I CANT get out of bed and I CANT take care of my kids.  The only thing I CAN do is lay on my couch or sit in my chair or lay in my bedroom and on really bad days, even that is too hard.  With my pain pills, I can move around my house and help around the house. I can help my husband with hard work and I can "play" with my kids and read a book to my kids and even get on the computer because without my pain pills.  I can't even type on the computer because the tips of my fingers hurt too bad to push the keys and if they don't hurt to bad for a day, then my forarms aren't working right and I can't type either. 

Every day things for every day people are almost impossible for me without a pain pill.  I used to take for granted taking a shower, and getting up and getting dressed and put on my makeup and being able to be intimate with my husband...now I have to pick and choose, what do I HAVE to get done today and who do I have to disappoint today because I can't get something done.

(Original Poster)