WORDS CANNOT EXPLAIN

As I sit and wonder how to explain what I am going through, no words can really explain.  I suffer is all I know.  Trying to reach out and make people understand what my life is like is almost impossible since I can't put down everything I go through.  I forget so many things.  I have such a hard time trying to recall issues that have come up, or conversations that I have had.  All i know is that these conditions I suffer from leave me in agony!

I don't necessarily hurt when someone just touches me, but I will bruise if it is too hard.  Swollen glands are particularly a severe issue for me, and it repeats all the time.  So to say that I feel like I have the flu all the time is an understatement.  It is something that I have paid much more attention to lately though.  When this happens to me i notice that the ringing in my ears becomes more acute, and auditory noises bother me even more.  I can't handle the noise from the blower in the furnace, or my husbands music.  More then one sound at a time will drive me crazy!  I become so crabby...

When they say that a person with FM can't handle normal pain thresholds, I don't think that is necessarily true for me.  It's environmental factors i think that play into my pain thresh holds.  All though, I do have severe pains and don't want anyone to touch me because of it, if there is something that environmentally bothering me, it makes my pain worse.

Stress is the thing that kills all of us!  people with out any conditions as well.  But when I am stressed out, I cannot handle any added environmental stimuli or I become consumed in pain, and therefore cannot function.  which is a lot of the time.  My life has so many stressful components to it, it is hard to escape it. I do a lot of self imagery to calm myself, but it just doesn't work 95% of the time.  I like to escape in a warm bath and envision I am some where warm and calm, like near the ocean.  I can hear the waves crashing on the shore!  But when my eyes open, it is always back to reality.

People don't understand that it is a struggle everyday just to get out of bed.  I put my fake face on and pretend all is good, even though my body may depict a different reality.  Hunched over, limping, moving slow, and coddling my weak side and ribs for the pain is great.  I try to make good of everyday.  it doesn't always work out though.

I am saddened by the fact for the last week I have had to turn to painmeds.  I don't like taking them, but I can't even move without them.  It frustrates me to no end.  I don't want to be that person who depends on them.  But lately I have to. 

It breaks my heart people thinking, or she is just addicted to them.  that is clearly not the case.  I hate them.  I have had two friends, with in two months of each other, die two years ago from taking the exact meds I am on for pain.  Granted their circumstances were different from mine, but the result was they dyed because of the meds, which is sad.  I will never be that person, and i know it in my heart. But it is just sad.

When dealing with someone who suffers from chronic pain, you need not be judgemental, and have empathy for the person.  We don't want sympathy, just empathy, with a bit of understanding that we did not ask for this, nor would we choose it to be in our daily life.  I don't know anyone who would wish this for anyone!  It is not a life you want to live, but we were given this life, somewhere, somehow.  Everyday we look for reasons as to why, and we try to change what we can to make our life a bit more tolerable.  Tolerable is the key, but we need the support of others for this to occur.  If we can't get people to understand, and we feel isolated, our symptoms become greater.  that is a fact!

If we can accept the hand we have been dealt, then others need to accept that we are ill, and we need the support to feel better.  A cure would be wonderful, but I don't see it in my lifetime.  it took forever for the government to accept it as a real condition that affects hundreds of thousands of people, of every nationality, of every wage earner.  It is not specific to gender, it doesn't care!  Support people, this is what we need....

As for me, I have a very few amount of friends who get it.  My family still needs work, they know I suffer from pain, but they don't get the whole picture as to what stress does to me.  Expectations need to be thrown out the window because maybe one day I can do the dishes, and the next I can't.  I am not lazy, I never was.  But yet the world treats me this way.  Which in turn upsets me, and then my pain increases.  I am not a hypochondriac!  My symptoms are real, and you can feel masses in my back, my jaw, my neck, my legs, my arms.  I  just wish that people could understand how hard life really is and what a struggle everyday is.  Simple task have become tasks I cannot complete.  This becomes so frustrating and upsetting. 

Not being able to remember things because the fog is so bad.  I actually backed into my husbands car the other day!  It was like slow motion in my brain, I knew I was close and I was watching in the mirror, but it didn't register until i hit the car!  So I decided it wasn't a good day to try and drive.  Stuck at home again!  I don't drive at night because the lights bother my eyes so much!  I actually was closing my eyes while driving when headlights would hit my eyes!  So no night driving unless it is an emergency and I stare off to the side of the road looking for the line at the edge of it so I don't close my eyes.  It works, but I am scared i might miss something coming up on the other side of me.  So it is scary for me.

I am becoming more intuitive to my symptoms though.  I am learning from them and making adjustments where I can.  And I am praying that my family will become more educated.  I am thinking of printing up my symptoms that I deal with and hanging it on the wall so that I don't need to answer silly questions that I feel they should already know since I have been sick for years with these conditions!

My dad, bless his heart, is going to be 84 this year, and my mother, bless her heart, 80.  I told them that I don't want to live that long!  I can't imagine 40 more years of this!  I think that upsets them, but I tell them that they have to look at it from my perspective.  I am living my life to my fullest ability, and it is not a great and awesome life.  I love my family deeply, and I will be greatly missed, but I really hope I don't live that long in suffering.  But you never know, they could find a cure!  One could pray anyways!


So for now, I am just looking for some more understanding for myself and my family.  Living with FM/CFS, and the other conditions i suffer from is just what it is.  Making adjustments, learning, informing others, that is what i feel i am to do.  Just remember my mantra, "I WILL SURVIVE"