Monday, September 14, 2015

A day in the life of Fibromyalgia.

It's nearing my bedtime so this will be a short post (lucky you!) ;) I apologize for the absence in past months as I've been dealing with the loss of a job and trying to really find myself again. But that's for another time. 

If you don't know already, I suffer from Fibromyalgia. Before any of you start in with the "are you sure?" and "Have you tried eating toothpaste standing upside down while avoiding gluten for 26 days and eating ripened emu eggs?" ETC let me tell you this. YES I've tried it all. I'm still trying MANY methods to ease the symptoms. But THERE IS NO CURE. No propaganda/conspiracy theories please. I've heard all about those too. Just read and learn.

I REALLY appreciate your concern and want to help. But let me be clear. You do not suffer from this. You are not my MANY doctors that see me monthly for this issue (and they are trained much more than any of us, let's be honest). However, it gets VERY old fast hearing these "cure all" things that someone Googled or looked up on Wikipedia.

Here are some things that CAN help YOU understand people like me with this condition. I won't get into my other health issues on this post, but here's a brief inside look to educate you on what we go through:

A MAJOR personal favorite of mine:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

TIPS/FAQ:
1. LEAVING: If I'm in a public place and say I have to go, it's 99% likely that IT'S NOT SOMETHING YOU'VE DONE OR SAID TO OFFEND ME!!! I don't feel well. Rather than having to answer the CONSTANT questions from everyone and their aunt's dog's best friend, keep this in mind. It's nothing against you. I HATE that I can't be active like I once was; but this is the best I can do. Just be polite and bid me adieu. The sooner I get home to rest, the better off I'll be. It's embarrassing and makes me feel like I'm ruining everything for everyone (not to mention exhausting with all the explaining to everyone) having to answer people when they ask "Why are you leaving?" constantly. Aside from that, maybe I don't want to go into a long rant about my illness in front of everyone. Yes I put it here, but this I can do in my pajamas at home. Big difference.

2. "You're not always sick" "But you were fine yesterday/the other day etc!" YOU'RE RIGHT!! There are times when I'm SUPER active and able to get a LOT done. Many in the Fibro world call this Fibromaniac. This later comes to haunt those of us who live with the illness. Example: Saturday, I sleep in, have had plenty of rest and actually have ZERO energy because my body is trying to catch up from the week of work, running errands and everything else. I've had no time to myself and am exhausted. I'm a blob to say the least. I still function. Then Sunday, my body has FINALLY started to "catch up" to being as normal as possible and I over exert myself because there is SO much I want to do. So I end up running to the store, cooking, cleaning, gardening (those weeds were starting to meet the neighbors they were so damn tall) and do laundry. I finally sit down and I'm still fine. Then the next morning comes. OH. DEAR. GODS!! What marathon did I run while being run over by 1,000 clowns on unicycles afterwards?? Shit. I have to go to work and be productive.

3. "But aren't you on medication?" Yes and thank science for it/them. If not, I'd happily live in a tent in a field with my cats in the mountains and you'd never see me again.

4. "What IS Fibromyalgia?" Here's the brief version and links to check when you get a minute (even just to skim them). It's a vicious cycle (see picture below)...
Definition:  http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243
Causes:  http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/causes/con-20019243

 


I appreciate you taking the time to read and learn about this!!