The Most Painful Symptom of All

So, I have been avoiding writing.  Not really consciously but deep inside I just felt blocked.  Well, I realized that maybe the reason I haven't been writing is because I have been feeling so much all at once.  What a perfect time to write, right?  Well, not exactly......for me, at least.  Add this to the list of "what I am working on".  

For most of my life, I have been uncomfortable with negative emotions.  Anger, for one.  This is fairly typical of most women, so I've read.  I have been holding in so much anger as of late that before I explode (picture the blueberry girl from "Willie Wonka and the Chocolate Factory"), I am going to go out on a limb and talk about my anger.  Well, at least write about it.

Chronic pain and exhaustion and all the limitations they create, just plain stinks.  I can manage it most days.  But lately I feel pulled back to where I was when I first was very sick.  This is so unfair!, I scream in my head.  Just watching someone jog by my house, makes me tear up and cringe.  You have no idea how luck you are! I want to yell out my window.  

Where did all of this suddenly come from?  Well, I think it began a week or so ago as I was leaving the "preschool" (okay, daycare) with my little one and I saw a woman with a baby.  She was trying to get out the door with her stroller, diaper bag, etc. along with her preschooler.  I quickly helped her, and suddenly I looked at her face.  That is when I realized how ill I am.  I can barely manage to get through the day and here she is with a beautiful baby.  I watched her leave as her little girl got on her bike and off they went, mom power walking with the stroller and little girl happily riding her bike.   I realized the vast difference between this woman and myself as a little piece of my heart cracked and slowly broke off.

My four year old has often asked if we could walk to "school".  Environmentally speaking, we really should.  The healthy person I once was, would not think twice about it.  Of course, we will walk.  It's ridiculous to drive when it is so close to our home.   However, that woman is not who I am anymore.  Of course, I still care about the environment.  Each time I drive back and forth the short distance to daycare, I feel the guilt.  I keep telling him, "maybe someday when mommy is feeling up to it, we can walk".  I try to believe this in my heart.  I want to be that mom.  I am that mom, deep inside.  Yet, she is trapped by this ugly disease (sorry, syndrome) that holds her captive and only lets her out on good behavior once in a while.

Just the other day my fourth grader asked me to take him outside for a bike ride.  It was 6:30 p.m.  Spring has come and with it the longer days.  It was a perfect time to go outside.  My yearning to take my children outside was so intense it was palpable.  My back was in a spasm, my neck felt like someone was stabbing me with a knife and my body could barely hold itself up.  I had to say, "No, honey.  I'm sorry.  Mom just isn't feeling well enough".  He then asked when he could have a friend over.  I began to see red.  Hatred and rage filled my insides like bubbling lava about to erupt.  I looked at my beautiful son and snapped at him.  He was instantly crushed and walked away.  At the time I was thinking, "What do you not get?  I have been limping around since you got home from school, begged you to help me unload the dishwasher because my back hurt too much to do it alone, and can't you see I am doing the best I can??!  How about a little empathy here!  Is that too much to ask?!"  Thank God, these words did not actually come out of my mouth. Quite honestly, I cannot remember exactly what I did say.  But, I will never forget what he said.  "I'm sorry mom.  That was a stupid question".   That was a stupid question.  Asking me if he could play outside and if he could have a friend over to play this week was a stupid question.  

After my husband got home, I asked him to take the kids outside (which he did) and then went to bed.  I felt so depressed, I just wanted to go to sleep and let the next day come.  Of course, I couldn't sleep.  When the boys came in to say goodnight, I spoke to my oldest and apologized about the anger in my voice.  I tried to explain to him that I was angry because more than anything I wanted to play outside with him.  There is nothing that makes me happier than to have his friends over and to hear their joyous laughter and watch their imaginative play.  I am, I told him, really angry at my Fibromyalgia.  I am not angry at you.  I want you to ask to do things.  Please always ask, I implored him.  I will do my best to say yes when I possibly can and I will say no when I can't.  We hugged and that was that.  I have no idea how my reactions impacted him.  I have no idea how much of my apology seeped in. 

Feeling so exhausted, I tried again to sleep.  Yet, sleep did not come.  Too many feelings happening at the same time.  I tried to read.  I tried to watch T.V.  I tossed and turned.   My husband came in to check on me and also to ask if he had done something wrong because I was acting as though he did.  I told him how angry I was feeling and how it wasn't about him or the boys.  He nodded, said goodnight and closed the bedroom door.

The thing is, it IS about the boys and my husband.  Maybe not intentionally, but all of this pain, exhaustion and emotional ups and downs affect them in a way I will never know the depths of, nor will I truly understand. 

In my world of chronic illness and chronic pain where I often feel no one understands the intensity of what I am going through, I suddenly realized that I, too, will never understand the emotional impact that this damn thing is having and will continue to have on my family. 

And that, my friends, is the most painful symptom of all.