Wednesday, March 27, 2013

What does this feel like?

I get asked that more than I can remember. Or maybe I only hear it in my mind. Who knows... But, you're here and reading this now, so let's discuss how fibrofuckingmyalgia feels. And I know that's what I whine about on this blog a lot. But in a general sense, how does this stupid thing feel...

I've compared it to being thrown from a horse, hit by a truck (I've never actually been hit by a truck, except when I was in another vehicle, which isn't the same thing), and more often than not, I compare the overall feeling of pain and tightness to that of a heavy workout. Like, you know when you work out after not working out? And the next day, your muscles are tired and they're sore? But it feels good, sort of. In an accomplished way. Fibro is a lot like that, without the accomplishment.

Last week, I was forced to change my description.  I had a product gig (in case you don't know, I take product photos for a local clothing designer, for their website/catalog). And I had twelve products to shoot (this time, sandals). Twelve sandals, six photos each (front, back, side, side, three-quarter front, and top). And for each photo, I had to adjust the sandal... straps, buckles... And these sandals are NICE. The leather is so soft that it doesn't stand up on its own for a photo. I have to use tricks and things to prop up bits here and there.

So, there I was, standing, then sitting to take the photo, then standing, then sitting, then standing, then sitting (I have a folding table that I take my product photos on, about the height of a card table, but half as wide). For more than seventy-two photos (because I kept seventy-two, I probably took 80 or more). Later that evening, every time I moved, my thigh muscles screamed out in pain.

It felt GOOD. The pain was that post-workout pain and it really did feel good. I poked at my thigh. Ouch. Ha! Poke... poke... I'd flex my leg muscles just to make that pain happen. It felt that good.

The next morning? Oh, here we are... back to the fibro pain. And yet, that pain in my thighs still felt like post-workout pain. (I really do miss working out). So, fibrofuckingmyalgia feels nothing like workout pain. And it doesn't feel like: "...an all-over feeling of tightness..." that the TV drug ads tell us it feels like as the physically fit woman reaches over and gently squeezes her shoulder.

Yes, there is tightness. But it isn't mild. It feels as though your muscles are being pulled apart. Pulled  slowly away from the joints. A steady, slow, agonizing tightly-pulled feeling. And you know that feeling you get after you, say, hold your two-year-old toddler too long? You're standing, he's bored, you pick him up but then end up holding him for too long? That tired-muscle feeling... happens all the time. Every day. That's what I felt just now when I paused in my typing to pick up a six pound Chihuahua who wanted some attention because that's what six pound Chis do (want attention). Six pounds and I felt like I'd been holding a toddler while waiting in a slow line at the DMV.

The pain isn't just all-over and tight. There are "hot spots". I've mentioned a few of mine before. My hip muscle. It used to be my right one. Now the left one hurts, but not the right one. And my foot and ankle. I spent almost six months with a pain in my ankle and into my foot that felt like a severe sprain. Every day. My hands from time to time cause me a lot of pain. My shoulder joint- right side. I have tendinitis in my shoulders, so it usually feels like a terrible tendinitis flareup.

And, of course, the skin. Itchy, itchy skin. But not a normal itch, more like a "oh, I've burst into flames after stumbling into an itchy convention" kind of itch. Under the skin, painful, feels hot. I've wanted to drag a vegetable peeler across my skin. How much worse could it feel?

Today was about a six or seven on the pain scale. I managed not to fall asleep for no reason, so that's good. But gravity has been especially harsh lately and because the weather is changing (again, still, I can't keep track), I'm treated to the fire skin.

That's what it feels like. Sometimes. Other times, it is much worse. And even other times, it is much better. But mostly, fibrofuckingmyalgia is full of suck and it has nothing good and fun. Well, except me... because I'm awesome.


41 of 365 Part 4: Over-the-top with cranium accessories...

Friday, March 8, 2013

Things that change...

I'm often asked- no, that's not true... I'm not often asked, but when I AM asked, one of the questions I get a lot is: "What's the worst part of this disease?"

Ask me again tomorrow, you'll get a different answer.

Right now, the worst part is that the pain and exhaustion makes it impossible to focus on anything. I can't read a book because while holding that book, my fingers alternate between painfully numb and just painful. Sitting too still causes me to stiffen up, so that eliminates most book-reading and movie-watching. And like right now, today's exhaustion... I fell asleep watching TV. And not only did I fall asleep from the fatigue, I was awakened every twenty minutes or so by the pain and the painful numbness.

So, that... the fact I can't concentrate on things because of the pain or fatigue. I used to read all the time. I read anything, everything. I'd rip through a book in a couple hours. I would read so much that I'd write when I wasn't reading. (nothing good- it was incredibly bad fiction) but I can't even do that anymore. Right now, as I type this, I'm shaking my leg to keep myself awake and every paragraph or so, I have to stop and shake out my hands because my fingers go to that painful numb place.

I'd go sit down and watch TV if I didn't think I'd fall asleep doing that. Falling asleep randomly in the daytime- ha ha hahaaaaa- completely screws up my nighttime sleep pattern. ISN'T THAT WONDERFUL!?  That accidental nap I took today was two hours long. I woke up every so often, but that's not going to mean much when midnight rolls around and I'm staring at the stucco on the ceiling in my room. Yeah, our ceilings have stucco on them, with glitter. We didn't do that, it was like that when we moved in. I thought it was cool at first, but stucco is a son of a bitch to vacuum. And, it collects dust like... well, stucco.

Not like I'd vacuum the ceiling anyway... who can keep their arms up that long? I'd lose feeling in my hands and gain a lot of pain in my shoulders.

If I were at least unable to concentrate because I was distracted by something ("ooh, shiny!"), that'd be one thing. But when I'm in this much pain and this tired, even the shiny stuff doesn't hold my focus. Sitting in my computer chair takes effort. Typing these words (all of these words, not just THESE words) takes effort. If I sit down on the sofa and watch a movie, sleep will grab me and drag me down to the floor where I'll get covered in dogs and dog hair.

But, tomorrow, something else will suck more than this. Or, maybe I'll get lucky and NOTHING will suck. Well, except that it isn't July 6th tomorrow.

Tuesday, March 5, 2013

At least I wasn't in public this time...

I've posted about these stupid flareups and how bad they hurt and sometimes they bring on tears. And the crying has only happened a few times. And one time, it was in public. (if you don't feel like reading that- either again or for the first time- I had a painful, tearful meltdown at the ren faire).

Today, I woke up, feeling tired and sore, just like yesterday. We had a major snowstorm coming. I woke up expecting to have a foot of snow on the ground, but when I looked out the window, there was barely a dusting on the ground (well, on the roof of my back porch, which is visible from my bedroom window). I took my morning medicine, I had my breakfast (a couple of Special K cereal bars, because I didn't feel hungry enough to eat a real breakfast, but I had to eat something because of the medicine I take in the morning). I dragged myself back upstairs before 7 AM and took a weird hour-ish long nap.

I woke up from that restless nap feeling slightly better. Just a little. Not much, but a little. The snow had intensified and we had four to six inches on the ground by then. I did my usual morning-after-morning stuff. Took the dogs out, cleaned up a little bit in the living room (I really need to vacuum, but I already felt crappy and dragging that Dyson around would have made me feel worse). Then I set out to do my 365 for today. It was snowing and I was hoping to catch a decent shot of the snow falling. I'm in a group on Flickr that does daily themes for your 365 projects and since mine is a self-portrait project, the theme was a little daunting. "Just one shot". No retakes. And if you know me, my 365s are carefully posed and sometimes take as many as ten shots to get just one that I like.

So, I rigged an old umbrella on my camera and the tripod (because it was still snowing) and went out and took my "Just one shot". Then I did about six retakes, because the falling snow looked so cool in that "just one shot" that I wanted to see if I could get a better shot for Facebook Profile Photo use.

And everything was fine. I went on with my day. I made lunch (ham and cheese on wheat), I edited the few photos (I kept that One Shot and one of the retakes, and I took four shots of some roses in the snow). And around 130 PM, I started to get twitchy. Sitting at my desk became uncomfortable. I stood in the kitchen for a few minutes, considered doing the dishes. I stood in the living room, going through the cable guide, but I didn't sit down because I knew the dogs would get all over me and that would hurt.

I figured that my body was just tired, like yesterday. Yesterday, around 4 PM, my body said it was done. That happens sometimes and I lay down for about thirty minutes. Sometimes I sleep, sometimes I don't, but the 30 minutes helps. I told my son that I wanted to get up at 430 and if I was still in bed at that time, to come get me. At 440, he woke me up, because, goddamn, I fell to sleep almost immediately.

I was in bed today, fully clothed, feet still in my boots, watching TV and expecting to doze off a little. But for 20 minutes, I became progressively worse. My clothes hurt. My boots felt like they weighed fifty pounds. The pain was all over my body, everywhere. I got up and took off all my clothes and got back under the fleece blankets. Surely that would help. That always helps.

For over an hour, I lay there in bed, my muscles, my skin, my body just screaming in agony. Everything hurt. Laying completely still hurt. Moving my legs to break that pain hurt. I was in hell. I cried. I couldn't stop the tears. I couldn't stop the pain. I was in bed, naked under the super soft fleece blankets and cried from the pain. Eventually, I fell to sleep for about thirty minutes. When I woke up, I still hurt, but I wasn't crying anymore. I stayed there for more than another hour before I got up. I was in bed for three hours total, most of that time spent naked with the fleece blankets.

Around 5 PM, I finally made my way downstairs (in my giant yoga pants and too-big "I shoot RAW" T-shirt, and the softest hoodie I own) and promptly took my Vicodin (that'd be an hour early and as I type this, its almost 90 minutes since I took that).

I was thinking about this fibro thing earlier today (because, how can I not? It seems to be the center of my world) and someone once asked me how it feels to have it. I was thinking of writing up a post that describes things as they happen- of course, I'd have to save it as a draft through the day and then post it at the end of the day. But I can say this...

You know that feeling in your body when you've worked out after not working out for a while? That feeling of tight, painfulness, on top of complete fatigue in the muscles? That is how I feel on a "good" day. My larger muscles ache almost all the time. Good days are the days when I don't need the Vicodin to get through them. That's at about a 5 on the 1 to 10 pain scale. And then, those days when I cry. The days when even Vicodin doesn't touch the pain. That pain today was so intense that I can't find the words to describe how bad it was. But, right now, 90-ish minutes after taking three 5/325 tablets of Vicodin on an empty stomach (I haven't had dinner yet), I've finally reached that point. I feel like my muscles have worked out too much. Every muscle is tight and sore. My skin feels hot, but when I touch it, it isn't hot. When I say "everything hurts", I mean everything. Even the tips of my fingers- my fingernails... well, the nail bed, actually- that hurts. It hurts to type.

At least I'm not crying. That's all I can say about that right now. At least I'm not crying and at least I was alone in my room where nobody could see me crying about the pain. I'm going to take my nightly muscle relaxers and find something easy for dinner. Tomorrow will be better.

Monday, March 4, 2013

Day three of this flareup with no end in sight...


I've been released upon this planet without the proper coping mechanisms. Why would my leaders allow me to live in this extreme gravitational situation? This planet's gravity is so harsh that sometimes, I curl into what the inhabitants refer to as "a question mark". They have a name for this here and it seems there are more of us "visiting" than we originally thought.

The planet's medical personnel seem to think this can be helped with small, white, powdery substance that has been pressed into a dry capsule. You know, just like the four-course meals Mom used to make back on our home planet... oh, memories! I've had a steady level of these "pills" in my system since nearly three days ago. On what the Earthlings call "Saturday" at "6 AM", I took two of these pills. And I refreshed my levels every six hours... till today.

It seems that those "pills" alter my ability to function just enough that I can't operate their crude transportation devices with enough safety. They do little for this intense gravitational pull, however. And yet, when I don't take them, gravity intensifies.

This strange condition localizes itself in different places on my humanoid form. Some days, I have an all-over kind of pain. Like when we had that battle on the Splearge planet with the Tandonites... I'm sure you remember that. If not, you learned about it in history class. Other days, the pain intensifies in one localized place- sometimes the hands, sometimes the feet. Those are four of the most-used humanoid tools! Yes, four. You see, they only have two hands and two feet. These beings are a strange bunch. This condition lends itself to slightly more intermittent but no less painful conditions. One leads to intense localized pain and slight numbness in one of the feet. I know what you're thinking- how can there be numbness WITH pain? I don't know how to explain it to you. You need to come down to this planet to experience it for yourself.

If I could only get a piece of our planet and hold it near to me, I know I would feel better. Much like Kal-El, that bastard got a lucky break, didn't he? "Oh, look at me in my humanoid form on Earth! I can fly and stop bullets with my spit-curl" or something like that. Yeah, till someone threw a meteorite of your planet at you. Then you turn into some weird little kitten. At least he's not in pain...

I declare that this planet is a terrible place and it would not be worth our time to invade. Please send a rescue shuttle at the earliest possible convenience. I'll keep chewing down these powdery capsules and hope for some relief. I seem to have kept one ability from home- I heal from injury quite rapidly. The problem from that includes a severe itching sensation and a rapid tightening of the small muscles in the area of the injury.

Again, I beg of you to please send a rescue shuttle. I cannot take this much longer.