To Sleep Perchance to Dream…

High Noon

To sleep, perchance to dream—ay, there’s the rub,
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause. There’s the respect
That makes calamity of so long life.

Pretty much what I was doing at noon. Sleeping.  The days are my own to do with as I want.  So I laid down for a nap.  With Lupus the naps can be long.  The longest lasted around 14 hours.  I, to use an overused phrase, go out like a light and that 15 minutes becomes 14 hours.  I laid back down at 9 and here I am at 4 p.m. wide awake and bushy-tailed.  Okay, I’m lying.  I’m tired but I am awake and contemplating another cup of coffee.

In our family we get ill when we hit our 60s.  That’s when you get cancer, diabetes, or other illnesses.  We all get that except for a few old farts who make it to their 90s with no visible change.  It’s a fair exchange.  I was 35 when I had my first cholesterol test.  I had McDonald’s for Breakfast,  Burger King for lunch and Subway for supper.  I was staying at my mother’s after moving back home.  I went to the family doctor I had since I was 12 and he made me take one.   I was thinking, “I’m so screwed” because I knew what my diet was like.  Chicken Pot Pie,  Steak and all the goodies.   He took the blood test.  I come in for my results.  My cholesterol is low.  I had 4 eggs and a steak for breakfast that week and my cholesterol was low.   Our bodies cope in my family very well until at 60, they stop.   But then 200 years ago?  We would have been dead by 60 anyway.  The life expectancy was 20.  You died around your 20s.  We lived until we were in our 50s and 60s.  Our babies survived.  You had lots of children not because you loved them and wanted them.  You had them so one or two would survive.    Babies died.  Some didn’t even bother to name them until they were older.   With the exception of 1 or 2, ours lived.  We had large families.

My bet is those genes kept my Lupus at bay all these years.  I was tired.  I can’t remember never being tired.  I woke up tired.  My mother was always harping if I went to bed early I wouldn’t be tired.  I could go to bed at 7 p.m. and get up at 8 a.m. and I was tired.  No amount of sleep fixed it.  It was the Lupus.  I would wake up sick in the morning and by noon it would be gone.  We always assumed it was a flu.  Then my mother assumed it was me being lazy.   Yeah, there is nothing more fun that being sick and tired.  The woman just didn’t get it.

Oh, there were days I wasn’t tired or sick.  Rare but they were there.  There were days when my lymph nodes weren’t swelled.  But they were few and far between.  And they were wonderful days.  Now, I realize they were what “normal” is.  Don’t get me wrong.  I am grateful what I have is as mild as it was.  It wasn’t until whatever protections our family has built into our bodies started to fail that the Lupus showed up enough to be diagnosed.  The joint pain is horrible.  That’s actually how we found it.   My family doctor sent me to a specialist.  She tested me for Lupus along with the other tests and I have the markers.  When we started putting those things together, we realized that it points to Lupus.  Suddenly it all makes sense.  It might have been quicker if they had said the Lupus Rash aka Butterfly Rash on the face is not a rash at all.  It’s a flush.   I always had them when I was little.  Mom claimed I was overheated.  Not sure how sitting under a tree reading a book can make you overheated but that’s what she said it was.  No matter what I was doing, reading, running, riding my horse, I was overheated.  No, today we know it was Lupus.

I even know which ancestor to blame and it was on Mom’s side.  There were multiple problems with that Great Great Grandfather’s family and he and his brothers “were in so much pain they could no longer farm”  when they hit their 50s.  I understand that pain.  Thank God for electric blankets and mattress pads and medicine.  I can only imagine what they went through.  I’m in my 50s.  I understand that pain.

So what was I doing at Noon?  Sleeping.  I slept and dreamed of a different world where I don’t hurt and I’m not tired and everything is right and everyone I loved is alive again.


9 thoughts on “To Sleep Perchance to Dream…

    1. It’s a flare or at least it is part of the same flare that started a few weeks ago. Now we are doing the skin “real” rash thing. I’m allergic to myself.

  1. May the rest of your day be a good one. Thank you so much for sharing your story. Even though it may not have been too bad, it is still tragic that you had to spend so much of your life having to apologize for your disease instead of getting the proper diagnosis and treatment for it.

    1. I told the doctor as I walked out of our last appointment, it is wonderful to know there was a reason. I wasn’t lazy or trying to get out of school or work as my mother claimed I was. I was finally validated. when I left high school [extremely stressful time, thanks to my mother, it went into remission. Can you believe, my mother was more stressful than Boot Camp?] I’m not sure my mother would have handled it well if I had been diagnosed. I don’t think she was capable of that. I know I couldn’t have done all the things I did do had I been diagnosed. I wouldn’t have been able to enlist in the Navy. As it was, since I was very fair skin, they just assumed I “burned easy”. Heck I assumed the same thing.

  2. When my husband was diagnised with pancreatic cancer, he told me he hoped he’d had it for 14 years, because that was how many years he’d been tired and that way he had an excuse for it. It reminded me of your relief over finally being diagnosed…Judy

    1. My half sister is in the end stages of stage 4 inflammatory breast cancer and breast cancer. She’s been fighting this for 3 years now. She said she knew she had it before that because she was tired all the time and coffee tasted funny.

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