Invisible Illness Primer – (or ‘We Didn’t Choose our Bodies’)

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By: Jana Greene
For all of you Normies (normal people) out there, I hope the shines a light on what living with a chronic illness feels like. For all of you who suffer from an invisible illness, I pray this blesses you and assures you that YOU ARE NEVER ALONE!
Woke up this morning feeling like Death’s younger, less apprenticed sister/ like “shit on a shingle,” as we used to say in Texas (!?) Like I  should get busy living or get busy dying (props to Shawshank Redemption), but suck at both endeavors right now and am kind of hovering around in between? Health Purgatory.
When people with a chronic illness tell you “Meh, I have good days and bad days,” they ain’t whistling Dixie. It means they have good days in which they feel manically invincible and squeeze a thousand little errands in that ONE day because they never know when a ‘bad’ day will hit, thus exhausting themselves and hastening a ‘bad’ day. On good days, you do the normalsauce stuff other people complain about having to do with great aplomb. Gleefully, almost.
  • BAD DAYS:  Every. Cell. In. Your. Body. Hurts. You feel like you could sleep for days  except your head is exploding.  Going out to the mailbox saps you. You find yourself wondering where the exhaustion ends and you begin. Bad days are weepy, sore, frustrating days of complete unproductiveness. You are down for the count.
  • GOOD DAYS: Yesterday was a GOOD day, I went about my business like a regular normal person. That’s all I want! – To have a solid week with no pain or migraine or nasty bug. Can I just give a shout out to the GOOD DAY, the one in which it doesn’t hurt to dress yourself, and you go to Trader Joes AND Food Lion in ONE day, and have the strength to carry in the groceries when you get home? I get a natural HIGH on days like these. And praise Jesus for making them possible.
  • MY IMMUNE SYSTEM IS A REAL ASSHOLE:  It is the Hostess with the Mostess, that system.Lets EVERYBODY IN – flu,  sinus infection, UTI issues, 24-hour bug…you name it. It is super hospitable. I can almost hear my autoimmune disease say to a  virus that’s finally moving on, “Ya’ll come back here, ya’ hear!?”
  • ‘BORING THING’ ENVY: I’m talking when you are so tired or in pain that you are jealous that your husband is cleaning the litter boxes, because he can do it and you cannot. When my friends on social media complain about the boringness of having to take a car to have their oil changed, and your excruciating migrained head can only WISH you could do something like that  on this sunny, beautiful day. Instead, you are laying in a dark, silent room praying that your neighbor will not decide to mow his freaking lawn outside your window for the fourth time this week.
  • WHY YES, I HAVE TRIED THE ST. JOHN’S WORT!: Peeps, I’ve  tried it. Whatever you are fixin’ to suggest,  I’ve done it. Fancy and expensive shake mixes, check. Green Superfood, check. Yoga, check. Eating clean, eating dirty, fasting, Britta water filter, meditation,  pharmaceuticals galore, and (of course) prayer. Also tried essential oils, Dialectical Behavior techniques, and good old fashion denial. I have even had a spinal tap once, to rule out MS.
  • WATCH FOR DEPRESSION: If you have too may ‘bad days’ in a row, the bedfellow of depression creeps in, because let’s face it, THIS SUCKS. Is it any wonder that the number of chronic illness sufferers who experience mild to severe depression is sky high? When you don’t feel good, YOU DON’T FEEL GOOD, and it’s a real buzzkill to your body, mind, and spirit.
  • SILLY STUPID THINGS: Cough or sneeze? Subluxated rib (ribs temporarily dislocate – it is every bit as fun as it sounds). Drive over to the Quick-E-Mart? No can do – double vision from a migraine. I once broke my ankle in two places from climbing out of bed and walking to the bathroom to pee. Torqued my leg in just the ‘right’ way, and felt my bones breaking. Turns out, it is related to the syndrome I’ve been diagnosed with. (I wonder what the odd are of harming oneself just by getting up to pee? Hmmm.)
  • HUGS ARE THE BEST: I’m not actually sure this has anything to do with chronic illness, but it surely doesn’t hurt!
  • FAITH AND HUMOR are my saving graces. How do we still smile and laugh in the midst of pain and suffering, when our bodies that betray us on the regular? Because NOT to do so would take us from our feeling like death ‘warmed over,’ and straight into death – of the spirit and mind, if not outright and altogether. Gallows humor is still HUMOR.
  • PRAISE GOD FOR YOUR HEATH AND NORMALITY. If YOU are a regular normal person whose body jovially goes along with whatever you tell it to do, get on your knees and thank your Maker. Truly. Dude, I’m so jealous of you right now.
  • INVITE US: I know we cancel plans a lot. It makes us feel unreliable, and I’m so sorry for that. It comes with the EDS, Hashimotos (or a plethora of other ‘invisible’ illnesses) and is one of the worst things about this. It isn’t that we don’t miss you and love you, it’s usually because we are in pain or chronically fatigued and simply CAN NOT. It’s not you; it’s me.
  • APPRECIATE YOUR SUPPORT SYSTEM: My Beloved (husband) has stood by in side for the past 10 years like crazy. I don’t know how he does it (I sure as hell wouldn’t be married to me!) He has never doubted my illnesses or pain. He takes tender care of me every single day. You need people around you who BELIEVE you and will never give up on you.

WE DIDN’T CHOOSE THIS FOR OUR BODIES. WE DIDN’T CHOOSE THIS FOR OUR LIVES:

Thank you for your understanding, Normies. We need your support to survive this thing.

God bless us, every one.

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Sleepless

By:  Jana Greene

                Last night was a  self-choreography of tossing, turning, fitfulness.  Like synchronized swimming in the bed.    

                Yet, the sun still came up this morning, right on time.

                Last night, when I scrootched in bed next to my sleepy husband around 10:00 p.m., the possibility of slumber seemed promising.  I was in peaceful spirits because I had made it through the entire day without any pain medication at all.  For over a month, I had been weaning down to only one-half tablet per day at bedtime for pain due to a surgical procedure.  But not today, I thought, triumphantly.   This pain, I can handle.

                I tried to get comfortable, as the mild throbbing in my leg intensified.  Sleeping in the orthopedic boot is as awkward as sleeping with one of those giant “#1!” foam fingers you see waved around at football games strapped to your leg, if that foam finger were made of brick.  Still, I can usually manage to sleep a little.

                Not tonight.  It is now 1:00 in the morning.

                The pain is spread like a rash in my bones.  I take three Advil, and wait for them to negotiate with the pain.

                Meanwhile, I move my spastic-ness to the living room couch and try to settle in there.  There’s no point in keeping my hubby up as well.  Our dog – an elderly Golden Retriever with a lapdog mentality, tries to jump on the couch next to me.    I scold her.  She slurps me with a kiss to the face anyway, because, honestly, Golden Retrievers don’t know any other way to react except with love.  I could learn a lot from my dog.

                On this night, the Advil is a crappy negotiator.  I take the boot off, but my ankle feels too vulnerable.

                 So, I put the boot back on, and it feels heavy on the hardware in my leg, like there is no flesh between it and the titanium plate.

 I don’t feel like “#1!”

                I start to worry about things, because the peace in my tired mind had vacated hours ago.  One anxious thought leads to another until the soundtrack to my mind goes something like this:  

I wonder if I took enough chicken out to defrost last night. Did I remember to feed the cat?  I wonder if Blues Traveler broke up, or if they might be touring?  I like harmonica music.  Hmmmm…..What bills have I not paid yet?    What if our kids live with us forever and never fly the nest? (this is when the thoughts took a turn for the worse, I think.)   OHNO!  How can Bob and I make them NOT WANT TO live at home forever?  We make things way too easy for these girls…..How much RENT should we charge them?  Oh, no….but I WILL MISS THEM when the nest is EMPTY!  When should I look for another job?  WHAT IF I DON”T FIND ANOTHER JOB???  Why is the economy so bad?  Where will the price of gas level out?  WHAT IF I NEVER WALK ON MY ANKLE NORMALLY AGAIN AND   WHAT IF I CAN”T LOSE THESE FIFTEEN POUNDS AND NEVER BRING MY TRYGLICERIDES DOWN AND OHMYGOSH, I”VE BLOGGED EVERY DETAIL OF MY LIFE AND WHY DID I DO THAT???”……

                You get the idea.

                3:34 in the a.m. now.

                My oldest daughter be-bops out of her room to go to the bathroom down the hall and sees me on the sofa.  I shut my eyes quickly and try to fake sleep (oh how the tables do turn)…..it’s too late. She lights up like a Christmas tree.

                “You have insomnia too, Mom?”  She beams, like we’ve both been invited to a Prince’s ball, instead of sentenced to a night without sleep. 

                Because usually, when neither she nor I  can sleep, we agree to watch a movie, or play Scrabble together, or look at funny pictures of animals saying captioned things on the internet until one of us gets sleepy.  She is young, at that glorious time in life in which she can choose to eat or not eat what she wants.  Sleep or not sleep.  It makes no difference to her body….yet. 

                No, I grouse at her, turning over on the couch.  Not tonight

Then, it comes, the slightest hint of drowsiness, as if someone is pouring sleep over my head.  Ah….sweet, sweet slumber.  Sleepiness is warm, I think, pulling my soft blanket up and smiling a bit.  Really warm.  Whew…..I kick off the blanket, panting.  Dammit!  This is not sleepiness!

                HOT. FLASH. 

                If these villians all formed an alliance to combat the superhero of Sleep…they would be Pain, Anxiety and Menopause. 

And they were attempting to take up headquarters in my body! 

                I start to cry a little now, because I am being slowly drenched in sweat, and I’m already miserably tired.  Sometimes I have to get to the point of crying to remember to pray, and this was one of those times.

                I began to pray for myself.  I asked that God would help me combat the forces keeping me awake.  Ouch, Lord.  Ouch!  And a hot flash, really?   But as I pray, I began thinking about all of the people I am blessed to know who are standing in much bigger need of prayer.  I didn’t really want to , to be truthful.  I wanted to complain and be grumpy.  But….Names and faces, appearing in  my mind, rapid-fire….until there is no room to worry about lesser things.   I lay still (and blanket-less) and try to concentrate. 

I see the face of a friend who is in the intensive care unit in a hospital in Chapel Hill, fighting for her life.  Pray.   I think of my three closest friends, and the battles they are going through right this very minute, real issues with potentially lasting implications, and I ask God’s guidance for each of them by name.  Several long-distance friends from high-school, brought back into my life via the miracle of Facebook, who stand in the need of prayer two-thousand miles away…..please, Lord, hear their cries.

Miles are no hindrance to God.  And neither are units of time….hours, minutes, seconds…time that I’ve designated for sleeping.  Maybe He had designs on my insomnia for other purposes.  Maybe for prayer.  

There was no sleeping last night, and I will stumble around today with Uncle-Fester-esque circles under my eyes.  I will also most likely be a bit ill-tempered with sleep deprivation.   But as I write this, my elderly Golden Retriever is wrapped around my feet, not seeming to mind the awkward orthopedic boot under her head, not seeming to mind that I wouldn’t let her on the couch with me last night.  She is sleeping, not a worry in the world.

I could learn a lot from my dog.