(originally written August 10, 2007)

So, today was the first time since I started blogging and setting up MySpace and Xanga pages over a month ago that I felt too crappy to get online at all. I decided to go analog and just use a legal pad and a pencil instead (it’s a mechanical pencil - I’m not a total Luddite). I planned to enter it into my blog tomorrow, but I can’t seem to sleep tonight, so I thought I’d give it a shot now.

I didn’t even spend an inordinate amount of time online yesterday, or do any of the kinds of things that trigger my symptoms (cleaning, laundry, etc.) Sometimes the storm just hits with no warning or provocation, and I’ve come to terms with that. What does surprise me is how much I missed doing this, even for just a day. I guess I’ve become more attached to my time on the internet than I had realized. Wow, Mark will find that hilarious, I’m sure.

As long as I take it easy with lots of breaks, I think that a project like this is good for my health issues. Since I can set my own pace, it’s the perfect hobby for me, and it gives me a sense of accomplishment that I haven’t had in a long time. Going for over a month without any really bad days (meaning days where I barely leave bed) is something that hasn’t happened to me in several years. I think I have all of you to thank for that.

It’s weird, however, that even though I can’t usually pinpoint the cause of a flare or anticipate its arrival, my cats always know. Sometimes Annie will just sit across the room from me and stare at me with her head slightly cocked, waiting. Then, like clockwork, something starts to throb with pain (today it was my hips & my right arm). It’s creepy! She’s like that nursing home cat that predicts when the patients will die. Of course, she also entertains herself for hours by chasing her tail… Maybe she’s a kitty savant.

The other one (Blackie) is much, much, much , much dumber, but even she knows when I’m feeling particularly punky. It’s the only time she stops trying to push me out of my bed. She’s quite good at it, actually - picture a 25 pound, self-propelling, furry medicine ball with pointy teeth. This Queen-of-the-Hill game is perpetuated by the fact that I spend the majority of my leisure time (when I’m not online, of course) lounging on the bed, for one very good reason: that’s where our 56 inch flatscreen is. But after being here for about 5 months, Blackie decided that she was annexing the bed, and that I had to follow her rules if I wanted to stay. Naturally I took umbrage to the Anschluss, and we’ve been at war ever since.

Blackie also has a habit of sneaking up (inasmuch as a 25 pound behemoth can sneak) and stealing my pencil while I’m writing with it. Not really on topic, I guess, but odd just the same. Someday I’m going to find a pile of slobbery mechanical pencils squirreled away somewhere - unless she’s using them, or selling them at the flea market. Either way, I need a pair of cat handcuffs and I need them right now!

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(originally written August 2, 2007) So I realized that I have been blogging for awhile now, and have yet to talk about my condition. I have no intention of turning this into a whine-fest, but sometimes it’s awkward to ask about these things, and I don’t think most people understand what fibromyalgia is like. I’m not going to try to define fibromyalgia, or try to get technical about it. There are lots of medical web sites that can explain that stuff far better than I ever could. Instead I would like to just talk about how my condition affects me on a day-to-day basis. Today was a good day. When I woke up, I was able to get out of bed on the first try, after only 10 minutes of slow leg stretches. Many mornings I have to make multiple attempts before I can stand, and even then it’s a crapshoot as to whether I’ll make it all 10 feet to the bathroom. Apart from the stiffness, my usual complaint is pain, ranging from general tenderness to “I feel like I got hit by a truck”. Today being a good day, it was just a moderate soreness. When I hit the shower after breakfast, a lot of this pain eases, at least for awhile. Breakfast is always the first thing on my daily agenda, so I have some food in my stomach before I start taking my meds. Anti-inflammatories, pain pills, muscle relaxers, anti-emetics. I take about 10 pills each morning, and about double that before bed at night, with some more thrown in throughout the day as needed. Of course, I have to adjust all this if I need to drive anywhere, since some of these make me too drowsy to drive - assuming I’m not too dizzy or sore to drive in the first place. But I didn’t have to go out today. I spent the rest of the day alternating between watching TV and surfing the net. I can’t do either for more than 30 minutes or so without moving around, or else I’ll stiffen up and get really sore. I realize that having to take breaks between leisure activities is what you might call a “high class problem”, so I’m not complaining. Believe me, I know how lucky I am that I don’t have to try to trudge through a work day anymore, pretending that I’m not in pain or dizzy. Most days, this would be my itinerary until Mark gets home from work, but as I said, today was a good day. I took advantage of it by getting some laundry done. I’m good for maybe 2 loads in a day - I’ve learned the hard way not to push this limit. The last time I did, I couldn’t lift my arms for 3 days afterward. Next, I unpacked my UPS package from NutriSystem. I’ve been trying to lose weight, but more importantly I get a month’s worth of meals without having to go shopping or haul groceries. There have been times when this was not a luxury but a necessity. But not today - today was a good day. This was a very productive day for me. I got a lot of maintenance done on my MySpace, Facebook and Friendster pages. I have just started these in the last month or so, after years of slowly losing touch with most of my friends. It’s embarrassing to always turn down invitations or to have to cancel plans at the last minute, and it’s often easier to just avoid the situation. Eventually the contact dwindles to just a card at Christmas, if that. I am now in a place where it’s a bit easier to talk about my condition and my limitations, so I’m hoping to renew and repair these lost relationships - or maybe make some new ones. Mark got home at about 9:30 - he visits his dad on Wednesdays, so those are always late days for him - and we settled in for the most recent episode of “The 4400″ on TiVo. Then it’s off to bed for working men. I’m usually up long past Mark, and tonight is no exception. I’ll probably turn in after finishing this, which is actually a bit early for me. I have a doctor’s appointment at 8:30am tomorrow, though, so I should try to get some sleep. All in all, not a bad day. I have certainly had many more fun-filled days than this, but I’ve learned to appreciate just having a relatively pain-free day. I take each day as it comes, and try to set goals without having any expectations. I have days where I can play with my niece and nephew for hours, and I have days where I only make it out of bed to pee. I’ve had wonderful days on vacation with Mark, and I’ve had days where poor Mark has had to bathe and dress me. Some days will suck, but that just makes me appreciate the good days even more. And today was a good day. *Note: The previous blogs I refer to in the first paragraph - which are mostly about TV, politics, and MySpace problems - can be found on my MySpace blog. The link is blog.myspace.com/index.cfm?fuseaction=blog.ListAll… or you can view my whole page at www.myspace.com/barbararaymond

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My Fibromyalgia pain has been a lot worse lately than usual. Normally, my CFS symptoms will outweigh the pain, but the last week has been really rough.

The severe headaches that migraine medication and Darvocet aren’t helping with have me near tears some days. The pain in my knees and hips makes my 38-year-old body feel like 80.

Add to all of that the fatigue - I am a disaster! I’m hoping for a better day tomorrow…

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