http://invisibleillnessweek.com/?p=2739#IDCommentIDComment34889675

I especially sympathize with these 2 sections:

"Please, please don’t ask me if I’m getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It’s all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts."

"I can understand that maybe some feel FMS is not such a big deal. After all, it’s not cancer. It’s not heart disease. So, it’s not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don’t say this to fibro sufferers. This is not a harmless disease."

From http://www.geocities.com/ccslilsis/iamfibro.html:

FIBROMYALGIA TALKS TO YOU

Hi. .
My Name is Fibromyalgia, and I'm YOUR Invisible Chronic Illness. I
am now velcro'ed to you for life. Others around you can't see me or hear me, but YOUR
body feels me. I can attack you anywhere and anyhow I please. I can
cause severe pain or, if I'm in a good mood, I can just cause you to
ache all over. Remember when you and Energy ran around together and
had fun?

I took Energy from you, and gave you Exhaustion. Try to have fun
now! I also took Good Sleep from you and, in its place, gave you
Brain Fog. I can make you tremble internally or make you feel cold
or hot when everyone else feels normal. Oh, yeah, I can make you
feel anxious or depressed, too. If you have something planned, or
are looking forward to
a great day, I can take that away, too.

You didn't ask for me. I chose you for various reasons: That virus
you had that you never recovered from, or that car accident, or
maybe it was the years of abuse and trauma. Well, anyway, I'm here
to stay! I hear you're going to see a doctor who can "get rid" of
me. I'm rolling on the floor, laughing. Just try. You will have to
go to many, many doctors until you find one who even BELIEVES I
EXIST. You will be put on pain pills, sleeping pills,
energy pills, told you are suffering from anxiety or depression,
given a TENs unit, get massaged, told if you just sleep and exercise
more I will go away, told to think positive, poked, prodded, and
MOST OF ALL, laughed at when you tell the doctor I am debilitating.

Your family, friends and co-workers will all listen to you until
they just get tired of hearing about how I make you feel, and that
I'm a real disease. Some of they will say things like "Oh, you are
just having a bad day" or "Well, remember, you can't do the things
you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
Some will just start talking behind your back, while you slowly feel
that you are losing your dignity trying to make them understand,
especially when you are in the middle of a conversation with
a "Normal" person, and can't remember what you were going to say
next! Eventually, most of them will be like all the doctors who
say "It's All In Your Head". In closing, (I was hoping that I kept
this part a secret), but I guess you already found out. . . the
ONLY place you will get any support and understanding in dealing
with me is with Other People With Fibromyalgia.

I read this description of what it feels like to be sick and not necessarily look sick. I think it's a good way to physically demonstrate the concept to people who are genuinely interested/curious about what it's like to not be healthy. I don't need people to realize that it is a big deal when I can spend time with them, but I think it'll be nice for them to know that when I spend time with them, it means they are special to me.

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

The required construction on our unit is really disruptive, no surprise. Some days they work on the neighboring units more and I am able to rest or take a nap for a couple of hours. Today they are cutting through the wall by the balcony and removing the sliding door completely. I'm not really sure why they have to do that because we haven't had any problems with leaks or anything. Sylvester, one of the workers who has been working on our balcony a lot over the last couple of weeks, keeps saying, "Yup, A LOT of work, I told you, eh? A LO~T of work." He's 33, from Mexico, and is puzzled by the fact that I don't have any kids. He thinks I should have lots of kids because "babies are good!"

I made breakfast wearing earplugs and squeezed by the workers whenever I needed to walk between the kitchen and the living room. The noise and chaos really annoyed Lyle this morning. He couldn't wait to get out of there and go to his office. Unfortunately for him, he had to wait for me to take care of the rabbits, eat my oatmeal (too hot to eat immediately), and pack up my things to go with him to his workplace.

Well, now I'm sitting in one of the cubicles a little relieved that I'm not having any allergic reaction. The last time I was here was when I my face, arms, then rest of my body turned splotchy red and hot. Oh, and difficulty breathing kicked in half an hour later back at home. I was pretty sure I was reacting to something I ate for lunch that day, but I still feared that it could be something at Lyle's office. Anyway, everything's okay thus far. Much quieter here too.

Of note, I am becoming more sensitive to the sun in particular and probably just more sensitive to things in the environment in general. Lyle and I rode our bikes on Sunday to the Berkeley Kite Festival. We didn't know there was a festival until we saw the kites and signs along the SF Bay Trail. After we got home, I started feeling sick and feverish. I'd been in the sun and wind for about an hour and a half. Of course, I had slathered on SPF 50 sunblock before going outside.

DS, my new massage therapist, said she knows other people with fibromyalgia who are more sensitive to the sun than before they got FMS. I also read that one of the symptoms of FMS is increased sensitivity to chemicals and other environmental factors. *Sigh* As if I didn't have enough problems because I'm more sensitive to my environment than average.

Cute news: Zoe and Keeper like their new kozy bed. I saw them snuggling together in it last night. Mr. Jones likes his too. Seeing sprawling rabbits are so soothing to the soul. I want to get Fishbone and Clover the same bed as Zoe and Keeper. However, I'm reluctant because I'm afraid those two will decimate the bed in a day and the small size, which is the one I'd get, cost $20 each. Even Keeper and Zoe have already made one small hole in their bed. May be I can get away with tucking an extra layer of towels under their usual towel to create a cushy area for them? I wish the cuties will just not chew on certain things. I'd be happy to provide them with other things to chew on... Can't fight rabbit nature, can we? Mr. Jones will leave his alone as long as he gets a TON of attention.