I am a 28 year old princess with fibromyalgia. I am trying to manage my disease, find a job that I can do from home, & retain my general awesome-ness. Read about how I pay my bills writing articles. You can also look into where I write.
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Dear Non Fibromites,

Saturday, November 14th, 2009

If I hesitate when you ask me to perform a simple task like going shopping with you, there is a reason. If you ask me to go do something social and I say no there is probably a reason. It’s not that I don’t like you, it just costs too much. I’m not even talking about monetary amounts. It just upsets the careful balance of my life in a very real way.

First off, spending times in large crowds is rarely fun for me. I have to wear shoes, that hurts. Then I have to stand up for a long time, that hurts. This means that the next day I’ll probably be really sick, maybe even too sick to work. Then I’ll have to spend the rest of the weekend trying to catch up on work which will just make the fiber flare angrier. So thank you for asking, but please understand if I say no.

Sincerely,

Sarakastic

How I didn’t Cure Fibromyalgia

Monday, October 19th, 2009

Sometimes I get very frustrated with all of comments and emails I get about how to cure fibromyalgia. Yes, I guess I really appreciate that people want me to get better. However, I don’t like feeling guilty or pressured because I don’t want to spend any more money on things that might not work for me. Well in the same spirit, I don’t want to be annoying with my recent progress. I am not cured. I am still in pain everyday. I still hate wearing shoes. I still can’t stand for long periods of time. Plus, all of my progress gets thrown out of the window if I don’t sleep, can’t get enough rest during the day, or am stressed out. So, here is how I didn’t cure fibromyalgia (but made dealing with it significantly easier.)

Changed climates. I moved to a lower elevation, about 2500 feet lower. It’s not humid here but I’ve always live in the West so I don’t know how humidity effects fibromyalgia. It’s also a lot warmer in both the summer and the winter. I won’t have to deal with snow.

I started getting more sleep. My new apartment is so quiet; there aren’t even any dogs that bark in the neighborhood. This means I can go to sleep when I’m tired. I still wake up several times a night, but that’s my bodies fault instead of my neighbors. I also bought a new mattress that was comfortable for me. I was expecting to spend several thousand dollars on a decent one, but really even the $12,000 one wasn’t comfortable to me. I ended up with a $700 coil mattress with wrapped springs and a thin layer of memory foam on top.

I stopped stressing out (Well, ok, I cut down my stress by probably 75%, the remaining 25% is still probably above average). Through my use of the “Change Your Life in Seven Days” book I learned actual coping skills. I also read Carol Tuttle’s book “It’s Just My Nature” and am learning more about her program. I think with fibromyalgia there will always be more stress and more situations that read as emergencies simply because it makes life so much more difficult. However, I’ve learned to not let the little stuff break me. I have even changed my work at home job several times. I’d rather work a few more hours a week and not be stressed out. I find that if I earn more per hour, but have to deal with cranky editors, it’s not worth it. I end up getting so sick that I can’t work as many hours, so the dollar amount evens out to the same but I’m just sick and miserable in one of the scenarios.

Life is still hard. I am still not in remission. I am still scared that all the progress I’ve made will disappear. I just wanted to write this to say, it does get better, at times it’s even manageable. It doesn’t go away, but it does get better. I’ve struggled with this illness for over half my life. I’ve watched other people get “cured” or go into remission and wondered “Why not me?” It will always be a difficult disease to deal with, but as you learn more and can change your life to work with your illness, it gets easier, it gets better.

Today fibro feels like…a camping metaphor

Wednesday, September 2nd, 2009

You know when you go camping and you’re making smores and everything is great. There is that one charred log that you poke around and it just crumbles? Today I can relate because that’s the closest thing I can think of to describe the pain today…just owww.