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“But you did it last week….”

This kind of came up last night in one of my many ramblings my poor man had to endure listening to yet AGAIN….

How can I, one who did no less than THREE room renos in ONE week, be unable to do dishes the next? (okay, well that one is pretty self-explanatory….I was a DUMBass)
The problem with this disease is that it strikes wherever, whenever. Not only is one week different from the next but, often, one DAY is different from the next. Are all days shitty? No. However, understand that one such as myself MUST function nonetheless…and often symptoms are pushed through. I live in the reality.
So. Let’s start from the beginning of the day. Actually, let’s start at the end of the previous day.
Bedtime. Sleep. mmmmmmmmmmmmm sleep. I fall asleep quickly. Sleep is my friend. Most times, however, I cannot stay asleep (I will rip the legs off that hamster in my brain and beat him senseless with them!)
Now factor in any joint inflammation and stiffness. Rolling over? I have to wake up completely to haul my ass over in the other direction. Several times a night, on a bad night. (are all your nights like this? No. Most.)
Okay. Alarm goes off. I take up to 10 minutes to get my knees bending properly. My wrists ache. My elbows ache. My ankles feel like they’re not even attached.
“Ya, I’ve got that, too.” I know you do, but the difference with lupus is that on most days, it’s equivalent to having the flu. Full body “hit by a Mack truck” OW. Except it doesn’t go away after an hour or so, with a warm shower, when you start moving and functioning….and IF it alleviates, it does so only to where every joint burns. That’s the “lesser” pain. And it lasts all. Day. Long. It hurts to wipe. Anything. Got it?
I liken it to a post I’d done on Facebook…take a can of soup. Put your wrist on the counter. Drop the can of soup on your wrist. Do it again. Just to be sure. THAT, is what it feels like. My ex one night when visiting the little ones, told me (very kindly, though) that it had looked like I was dying. I had no colour in my face. My eyes were drawn and blueish. Dude. I FEEL like I’m dying some days!
Oh, but that doesn’t include the “bone crushing fatigue” that often accompanies my flares. Sometimes it does, sometimes it doesn’t. Remember the “Life is like a box of chocolates?”. Roulette. You just never know. Sometimes I don’t want to even expend energy breathing.
Hmmmm….what else? Okay, I often get my man to rub my ankles/feet/knees. Sometimes he does this and the relief is omg-oh-so-gooooooooood. Other times when he touches my skin, I jump. The area is SO tender, I cannot stand any pressure on it. I even take my socks off (does nothing, but whatever).
Muscle weakness: annoying beyond all reason. I cannot grip. Lost 3/4 of a tub of blueberries last week. Damn. One night I did not go out for fear of driving and gripping the steering wheel.
Sjogren’s. If I don’t take eye drops before I go to bed, and try to open my eyes in the middle of the night, they will not open. There is NO moisture. I must lift my fatigued arm to physically open my eyelid.
What happens the next day? I get up and do it all again.
Greens+ day 4: Awesome stuff. I can’t quantify a difference, yet…I’m just glad I can keep up so far ;o)
Day 1: Nicotine patch.


  1. Shane

    I do my best to make you feel comfortable, and often times that means that I have to rub your feet, ankles, legs, back, arms, neck, or whatever it is that needs rubbing. That's why I usually take care of dishes in the morning so I have more time to spend trying to make you feel better after a long day. I'm just glad I can get things done for you!

  2. 5andproudofthem

    I definetely feel for you! To have such struggles. It makes people like me take a second look at what I am really complaining about. The worst I have is depression, sleep dep and sore hips. This is nothing compared to the struggles you go through on a DAILY basis. You amaze me everyday from your post on FB with all that you do. Not only take care of your wonderful kidlets, look after others, renovate, knit, scrapbook, colour, entertain and still manage to care for others on their off days. You are strong and beautiful and I hope that you have some better days ahead…hugs!!!!!

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