irumeur…

alone with my pain…

Two nights ago, I was feeding my dogs.  When I turned my legs tangled with their bodies.  In order to prevent myself from being hurt worse, I did a side roll over their backs.  Landing with a ‘thud’ and three faces just above mine.

One might say I have no business with animals when my balance is increasingly getting worse.  I say -those animals keep me moving.

Lupus is an unfriendly disease, stealing your youth, your flexibility, your freedom from pain.

My family doesn’t even know about the fall, or how badly I am hurting.   They don’t have a clue about my pain.  Why tell them?  Just because I hurt isn’t a reason to walk around feeling sorry for myself, or acting like a person in pain.  I am used to this -I hurt all the time.

A couple of weeks back, the Lupus decided my shoulders and left arm were to be its primary target.  Lifting my arm, being touched, moving or lying still -it was excruciating.  I know it will go away with time -but until then, I have to live with it.

I’m not one to feel sorry for myself much.  Most of the time, I don’t even think about the pain.  What?  Yep, I don’t think about the pain.  My dad, a tough old man, once told me, “Pain is only there to tell you something is wrong.  Just because it is talking to you -doesn’t mean you have to let it hurt.”

I compartmentalize the pain, so I am able to live with it.  However, there are times I can’t get away.  My shoulders and arm for a couple of weeks are one example.  There is also the pain in my hip now.  During those moments -I move on and pretend I’m fine.

However, in those vulnerable moments, I feel alone with my pain.  I want to protect my family, so I hold it all inside, except for small yelps on occasion.  One day, at my mothers, I leaned over the chair rail and cracked a rib.  I screamed, mentally thinking “My mom will get scared if she knows I’m hurt this badly.”  So, I tried holding in the scream.  It worked, because they didn’t have a clue.

In those moments…I want to cry.  I wish there was someone who could take this suffering away from me, and I didn’t have to be brave.  I’m scared.  Scared of how bad it will get.

I’m already suffering everyday from pain, serious flare-ups that hurt to touch or move, daily episodes of vertigo, and times when every part of my body is in so much pain I want to die.  If that isn’t enough, there are nerves that light up like fire in my face, hands and feet.  What will it be like  five – ten years henceforth?  Will each day, each moment be more than I can hold in?  Will I be able to walk with the deterioration of my bones and balance?

This isn’t the only auto-immune disorder I’ve been given.  I also have Sjogren’s Syndrome that leaves sores in my mouth and nose.  My eyes get so dry the lids stick to their surface. My tongue has dried to the roof of my mouth.

The other is Lichen Sclerosis.  Geez, I can’t even talk about this one -it is a nightmare!

Don’t misunderstand me -I am happy, and I am always thankful for the freedoms I have, for the movement I still have and I am alive.  I’m a tough old girl -and I can handle a whole lot more.  If you remember I walked with a broken ankle for three months before going to the doctor (unfortunately, it is now another source of aggravation that probably won’t go away).

On the outside, most people haven’t a clue I am in pain or sick.  When they find out about the Lupus, they are shocked.  I don’t look sick.  I don’t bruise easily and I don’t whine or complain.

I am alone with my pain -because no one, but me knows how I much I need them to know.  Silly, right?  I’m silent, protecting my family -and I still want others to know.  It’s because I’m scared.  Not of dying, but I think…of living.