Lupus & Me: Music and Feathers

Here’s what fatigue means to me, how I experienced it. My hands felt light as a feather and heavy as granite at the same time.  I wanted to live and experience life but the shell of my organic being would not cooperate.  I discovered radio and books you could listen to and I held on to that vein of connecting with all the ferocity my feathers would muster.  I would listen to music, stories, news …as the days passed.  I would pause the sounds to hear who was in the house on watch.  They respected my wishes of not asking me how I felt.  This was during the great brain swelling that was really ever so slight.  But that’s all it took to throw my world into a lupus loop (I had to use that…I’ve been dying to use the lupus loop–it’s cheesy but just let me have it).

I was myself but not.  I was irritable times three, less or more depending on the day.  I was someone it sounds like I might not have liked too much unless I loved them.  If that was the case, I would have been up the creek or SOL.  I had a lot of people who loved me and stuck it out.  No Facebook, definitely no Twitter.  They called each other and spread the word on good days and strings of bad days.  Days still too freshly painful to tell about here even though it hardly seems like a decade is fitting of referencing the amount of time that has passed.

Some ideas forever lost because I was too tired to write them down. Even if the pen and paper were right there I was frozen.  I was stuck. I would say the idea over and over hoping it would come back to me one day, maybe in a dream.  How could I forget it when the idea made me feel alive but I was trapped and couldn’t even think of taking the step to get it on paper.  It was lost.

My shaky legs and shaky hands cooperated from time to time.  On those lovely days, I ran around outside from sun up to sundown taking pictures.  I would look at them later.  I wanted to capture as much as I could of the world to have it within an arms reach.

People that have never experienced debilitating fatigue can chose to believe it can be that bad or not.  It will not change my experience.  I am not lazy.  I am not unmotivated.  I dropped out of high school to have my first child and never stopped until reaching my goal of walking down the graduation aisle at the university.  It was a dream and I fought for it. Fatigue it’s more than being tired.  Just as grieving for a dear loved one is more than just a little sad.  This isn’t something you can just will away.  I tried.  In addition to not being lazy, I am stubborn, impatient, and stubborn again.  I thought fatigue was something you didn’t even mention at a doctor’s appointment as a real symptom for a long time..you were just supposed to deal with it.

With my lupus well under control, I am sometimes lulled into a false sense of security that I am immune to any of the old visitors like fatigue.  The visits are few and far between.  When they come I am a poor host so they will leave right away.  I remind them of the old Mexican saying that visitors and fish start smelling bad after three days.  Something I wouldn’t ever say to people visitors.  They get the point and retreat back within me for the present.  They remind me that I have been afforded a gift few have.  Manage my disease with regular treatment and resources available or expect the smelly visitors back– on that visit, they will not leave without a fight.  A fight I don’t want to have.  I will prevent it as much as possible.

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Here I am with my husband and son celebrating something worth celebrating..life!  I was still greatly over my normal weight and hardly recognizable to those who hadn’t seen me in a while.  My head was covered with a thick brush of new hair that graciously covered some stubborn bald spots.

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Here’s me during the same time with a shiny new wig.  My face is starting to get back to normal and so is my weight.

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Here I am, so many years later.  Older and with real hair now entering the salt and pepper stage with my husband.

If you have chronic fatigue or some other disease that tests your will, I have some advice.  Know those feathers are strong, you will fly again.  Don’t give up and keep your mind strong.  Even if you can do nothing more than lay there for a while, use it to dream– dream and then figure out how to fly away and make it happen.  I know you can do it.

5 thoughts on “Lupus & Me: Music and Feathers”

  1. I like how you liken Lupus fatigue to grieving for a loved one is more than being a little sad. You gave me some words that I cannot come up with myself. I should post about that as well as the pain. When did you start to look like yourself again? Were you still on Prednisone or were you just on a lower dosage? Thank you for sharing words of encouragement in this post. I’m stubborn too and want my “life” back. And it’s g

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  2. Oops my phone is acting up again. I liked how you said that these feathers are strong and you will fly again. I want to fly. I want to paddle board, practice Bikram yoga again, boogie board, bicycle, get out and take photos… I want to have a life outside of the “prison” walls of my home.

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  3. Thank you so much for the kind words. I started getting back to looking like the old me after about a year. I have had two major flares in my life that required chemotherapy or aggressive treatment. The prednisone was the treatment that physically changed me the most. I was a lanky, knobby knee girl most of my life and got a little meatier with age…as you can see, the prednisone gave me a triple chin! It was a unique experience and it wasn’t the weight that was the hardest part. I had weird things like hot flashes then chills or itching like mad. My skin would feel tight and dry, especially on my face many days. I would have nose bleeds or ulcers in my nose, throat and mouth. It’s never boring with lupus.

    I was thin but not because I exercised…I’m the laziest thin person you will ever meet. I got lucky and have parents and family that are just kind of longer and thin. I am 39 now and am starting to see age giving me a reminder that I will need to start exercising soon or lose the luck! I don’t have to take prednisone anymore but was on very low doses for many years. That helped with losing the weight and my hair 🙂

    Take care 🙂

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  4. You will get it all back! I know how tough it is. Find a passion and try to do some part of it now. Even if all the energy you can muster is only to capture your experiences in words on paper.

    Take care 🙂

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