irumeur...
Comments 9

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.

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I am a mother of 16 children and grandchildren. Some of them are by blood and the rest by heart. I was a foster mom for a few years and the children I cared for during that time have mostly stayed with me through the years. I love to write, read, dance, paint, and play with my animals. I enjoy dressage riding and just being in the barn. My words are my gift, as they allow you to know me as I really am. Thanks for joining me on this ride of life!

9 Comments

  1. You poor thing Dee. Don’t suffer in silence. Letting your family know what happened with the dogs isn’t whinging, nor is it feeling sorry for yourself. It’s the sensible thing to do so they know to be careful around you, not to bang or bump you. None of us can take your pain away, nor can your family but we can be there with sympathy when things get too much (still not whinging).
    Lupus is an awful illness, the pain is so debilitating, please don’t suffer alone and let the doctors know if the symptoms are especially bad and about falls in case they can adjust your meds. No-one can suffer it for you but no-one says you have to suffer alone even if it’s only to share with us.
    xxx Huge Hugs xxx

    Liked by 3 people

  2. Dee my dear friend i am so sorry about the pain you have to go through and i must say that i am glad you shared this so i could know. Please don’t battle this all on your own. Let your family know and offer their help in whatever little way they can. We are all vulnerable in one area of life or the other. It doesn’t mean you are winning. Hugs and kisses. I say a prayer for you.

    Liked by 2 people

  3. Please please please tell your family. My sister in law did not tell her children she was in the emergency dept with heart troubles and they were very distressed.

    Liked by 1 person

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