Lupus & Me: A Chronicle Of My Life With Lupus, An Autoimmune Disease

There are a thousand hacking at the branches of evil to one who is striking at the root.

–Henry David Thoreau

Music & Feathers by Chief Dreamer and Star Gazer, Estela Caballero

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. There was a weakness felt in every part of my body, so much so that I was convinced I should not go outside for a while.  There was the real danger that I could just float away.  My idea that I could turn into a human balloon is just one of many dark moments when Something called the blood brain barrier was protecting my brain from suffering the same fate as the largest unprotected organ in me.  It’s like a force field you would expect to see in the next Space Balls movie.  A thin shield was all that was standing between me and the bully that attached itself to my blood with a single purpose.  It wanted me dead.  I guess orders are orders but I wasn’t not going silently in the dark it was lupus, systemic lupus erythematosus.

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 said it 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.  I worked, usually full time and sometimes even with a part time job.  I share this because sometimes the things people think comes out of their mouths faster than they can filter it.  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.  Before lupus was recognized as a disease, which really wasn’t that long ago, the afflicted would be diagnosed from everything ranging from bipolar to “It’s all in her head.”

Having lupus doesn’t just affect your body.  It can be the last straw in breaking up a fragile marriage or moving farther and farther away from what used to be your goals.  Your future in the rear view mirror and a uTurn nowhere in sight.  Some days it can take a good hour just to unstiffen, sit on the edge of your bed and map out your day based on how you felt.  There is a guilt that sets in, I would imagine many that have a chronic disease feel like they can’t complain.  After all, there are treatments, temporary relief and increasing awareness about the part of you that revolted against you– of lupus imitating the Sons of Anarchy with your organs.  Believe me, I know how lucky I am.  I was able to get my lupus under control and stay under control, I work full time and am the mother to four young adults!  Those conflicting feelings of guilt and gratefulness are not too far apart, are they?  The knowledge that both feelings are all part of moving on– it’s a cycle of emotions that mark the kind of change that’s unseen.  Guilt for having access to medical care when others don’t even have the basic things in life.  Guilt at having a young daughter that was too young to even drive, care for her mother–  the guilt was over what she was missing out on in her own life even when she was not by my side.  The disease and my state of health were at the “in your face” stage while I was still in the denial and angry stages.  My daughter stuck in crisis mode even after the crisis passed.

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.

7 thoughts on “Lupus & Me: A Chronicle Of My Life With Lupus, An Autoimmune Disease”

  1. Thanks for signing up for my blog which lead me to find yours. I have CFS and you describe the fatigue perfectly. But I can’t say I have my fatigue as well under control as you has yours.

    Like

  2. thank you again for sharing your wonderful life with me… all of us…I can so relate to cfs it sucks. I’m having a little bout with it this last month I try to listen to my body and do what the dr has told me like getting rest and laying down when needed. but that is so hard for me but I’m learning to lay down and rest as needed. Like lupus isn’t hard enough to deal with along comes the other problems that goes with it.. but we must keep trying our best and hang in as best as we can. It will not win all the way.. Stay blessed my dear and as always I enjoy and very thankful for finding you on here.. Take care of you as well… Suzette

    Liked by 1 person

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