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.
Musings of a Gypsy Soul 
I really feel for you Jana. I wish I could make all your pain and problems disappear.
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You are too sweet, Ronnie. It just helps to vent sometimes 🙂
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Sometimes I experience particularly strong feelings of empathy, but it is usually when I am in close proximity to someone. Your post created such feelings.
Venting is good for the soul. 🙂
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