RSVPish

22 02 2013

Friends of fibroblobs hear “I’m sorry; I can’t make it,” a lot. It breaks our hearts to say it, & we know we’re probably hurting your feelings. You only have one Christmas party a year, or one birthday, or one bar mitzvah. And we really wanted to go. We tried. But we also fell asleep while putting on our mascara. We fell on the way to the car. We couldn’t turn the key in the ignition, & our right leg cramped as we tried to pump the gas peddle.

We realize we’re pains in the ass. Please don’t stop inviting us.

“But how come you were able to go to The Who? The opening night of The Hobbit? Jenny’s tea party?” We were well then. We may actually have been kind of unwell, but we’d flaked on all those people before, so we slogged through it. Or we paid for a ticket or the friend was in town only one night. We’d already missed too much work, so we made it through the day & crashed upon getting home. We overdid it. Now we’re missing the pleasure of your company.

It is never personal. Sometimes we’ve shown up to things with you while in tremendous pain, but the fatigue wasn’t so bad that day, so we just dealt with it. People I talk to with fibromyalgia almost invariably tell me it’s not the pain that keeps them home (most of the time), it’s the fatigue. Imagine being in a 25mph car accident, but also not sleeping for two nights. That’s us in flare.

I’m very lucky in that I manage my disease well with diet, exercise, & prayer. There is not a damned thing I can do about the weather, horrible LA traffic, or overwork. Fridays I am almost a guaranteed no-show, as I’ve been at work all week & I have nothing left. Sometimes if a thing is close by, I can do it for a short time. Sometimes I will come, but I’ll be late. So please don’t stop inviting us. We’ll always try super hard.

Even if you say you don’t care what state we’re in, remember I have to think of my safety & the others around me on the road. Even if I get a ride, will the other people there understand that I just want to die & am not actually a bitch? If you remember me as that super fun girl who danced for an hour at the last girls’ night, will you want to see me as a decrepit crone?

If we tell you we have a flat tire or a family emergency, that’s the truth. It’s not a fibro excuse. We trust our friendship enough to tell you “I’m so sorry; I can’t make it. I am sick today.” You don’t have to understand. We in fact pray you never will.

If you do want a brief introduction to what it feels like to have a chronic illness, this is a fantastic and well known story by someone with lupus. It applies to MS, fibro, RA, & CFS, too.

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When Feeling Better Leads to MOAR FLARE

19 02 2013

Working out, repairing & building muscle have, over just two months, decreased my fibro pain a lot & increased my functionality some. Subsequently, I feel like a normal person a lot of the time (as long as I ignore my personality).

The problem with feeling normal when you’re not normal is that you behave like a normal person. That is to say, you stop managing your time like a fibroglob & start allowing yourself to be scheduled like Justin Beiber on an international press junket.

…well, kind of. At least from a fibromyalgia point of view.

I now realize as my brain goes limp, my connective tissues go rigid, & my belly makes alarming noises that I scheduled 3 fibro unfriendly activities 3 nights in a row. Two were absolutely essential, but one wasn’t really & involved sitting still for 3 hours straight. I should not have agreed to it knowing exactly what else I had to do on Saturday & Sunday. If the extra activity had been essential, I should have gotten up & moved around so that my back wouldn’t freeze.

What was I thinking? Well, I wasn’t. Knowing I had a 3 hour drive on Saturday & a 7 hour event on Sunday, I still agreed to dinner with a client on Friday. I figured “It’s just dinner, in and out in an hour. Then I can shop for Saturday.” I ended up, three hours of sitting and one hour of shopping later, being in so much pain I couldn’t sleep. I made truly idiotic breakfast choices on Saturday, was stuck in traffic for 50 miles, but had a wonderful time with my family. Sunday was fun, but I barely ate all day.

Today it is cold & wet. I’m loopy & achy. I can’t form spoken sentences.

WHY AM I SURPRISED I’M IN FLARE?

Work was slow today so I came home for self care, which involves a lot of hummus. My stomach is much less rowdy. My neck has abdicated. My shoulders and hips are enraged. But I’m not making it worse by slogging through, providing crappy service, & sitting in one position for hours. I’m also not a hazard to other drivers with my fatigue (uh, any more). The idea is to be fully functional tomorrow rather than in a full fledged pain coma.

Healthy days are great, but you must remind yourself they’re precious & only exist with careful scheduling of activities. The temptation to overdo is nearly impossible to resist, but we must. Or you too will be on the couch in front of Bravo with a heat pad on your neck & this stupid cat screaming at me.