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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Whatever Comes Further, God is already There

 

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By: Jana Greene

“Hey, God…..”

“Yes?”

“What’s going to happen further along down the road?”

“I’m sorry, that’s on a need-to-know basis. Just trust me.”

“But….”

“Trust me, love. Whatever comes further, I’m already there with you.”

I’m always badgering God about what’s next, even though I know that I couldn’t even handle it if I knew. Seriously, I COULD NOT EVEN. But in some convoluted way, I ask God to reveal to me the outcome of certain things, but the gift of prophesy is not my strong suit.

I am considering this today as I’m struggling with my health issues. I have a rare-ish condition that causes chronic fatigue, migraines, intermittent system pain, and recurrent infections. It’s not going to kill me, but some days I feel like it would kill me if it were more merciful.

Here’s the thing, though: If God had revealed to me that I would do battle with this for the rest of my life, I don’t know that I would have stayed sober. I don’t know if I’d handle it well at all, so I’m grateful for the not knowing.

While I was busy NOT knowing, He went further down the road with me when I wasn’t even looking. The manifestations of His mighty hand over this struggle were being constructed long before I was even symptomatic.

If God had revealed that I would carry this thorn, maybe it would have gone down like this:

“Child, enough badgering! Come sit with me, and I will indulge your curiosity….

“As you grow older, you will feel like your mind and body are falling apart, because they will be – sort of – and you will be scared and tired and frustrated. But I’m working on an infrastructure for your life so that you will be able to carry this yoke…..

“I will bring you a spouse who adores you, and believes you when you are telling the truth about your pain. He will never give up on you, even when you are really sick….

“I will drop friends into your life with EXACTLY this same disease that you suffer from, and they will seemingly drop from the clear blue sky. You will marvel that I took such care to place those perfect people in your life at just the right moments. Lean on them and let them lean into you. They are sent directly from me….

“When you are having a bad day and hurting inside and out, I will scootch right up next to you so close that you can feel my love  for you, even through the pain. My Holy Spirit will be IN you, giving you fresh hope, even through the tears…..

“I will give you the gift to write about your experience, so that you can pay this Love forward to others….the ones who are gravely sick but look well, the ones whose labs and tests all come back normal and they feel like they are losing their minds, and that nobody believes them. YOU will comfort and believe them, just as you have been comforted….

“I will give you humor in copious quantities, so that you can not just survive, but THRIVE….

“Whatever comes further, I am already there with you.”

I get by with a LOT of help from my friends.

God bless us, every one.

 

 

 

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