Saturday, March 22, 2014

It shouldn't have been unexpected, but it was...

"Plans? You-chuckle-you had plans?!" [insert maniacal laughter]

That's what Fibrofuckingmyalgia said to me today. I started out the day with such high hopes. I did. We finally got past our bitterly cold weather. A couple weeks ago, I unplugged the space heaters that we have in the kitchen to keep our pipes from freezing. And I decided that it was time to go ahead and put those heaters away for the year and put all the crap back in the cabinets so I could have full access to the rest of my kitchen. (we take most of the stuff out of the cabinets when we use space heaters, lest we become a statistic).

I had to go to the store today. I had to. The youngest kid will be home this week for Spring Break and I didn't have any food that she would need for, you know, living. She's been super-stressed out, so I told her I'd get comfort food ingredients. (she even quoted me on Facebook with that fact). So, I had to go to the store.

And the store was crowded. And it ended up taking me a lot longer than I expected. So, after zig-zagging the most giant of all giant grocery stores, I got home, got my stuff inside, put away the stuff that could be put away... and then my body said: "You're done. Sit down. SIT DOWN NOW OR I WILL DRAG YOU TO THE FLOOR LIKE A WEAK MUNCHKIN!"

So, I sat down. I spent the next couple hours trying not to fall asleep sitting upright. I didn't want to take a nap because I don't want to screw up my sleep cycle (again). After sitting for a while, I had trouble getting up. And by "trouble", I mean that I rocked back and forth and flailed like an upturned turtle till I had enough momentum to thrust my body into a more solid position for putting my feet on the floor.

On top of this mind-numbing exhausted feeling, I now have pain. All through my arms and legs. And by "legs" I mean "the entire area from my waist down and a little bit of my waist-up, but not all of it".

The weather changed again- it had gotten warm. So warm that not even a jacket was needed yesterday. Today? Its about 20° cooler and windy. Every time I take the dogs out, I can feel the cold seeping into my muscles.

All this time, while fighting the pain, my brain keeps fighting with the exhaustion. My attention span is almost to Goldfish Levels and I can't focus even on "The Princess Bride" which came on cable while I was upturned-turtling. (they're at the wedding scene- "Mawwage. Mawwage is what bwings us togevah today"- and I don't even care. Dread Pirate Roberts is here for my soul and he can have it. Maybe he can do something with it).

On top of all that, it looks like its going to be a gorgeous sunset evening. And I really want to go get some photos of that. But I also don't really want to stand outside and let the cold make my fingers so stiff I can't move them. But it looks like its going to be really pretty out there.

What I need right now is for clouds to move in and block out the sun- that way I won't have to go take photos of it. I also need a chef to come cook me dinner- that way I don't have to go cook dinner for myself. I also need a maid- that way I don't have to reassemble the lower cabinet areas of my kitchen by myself. And I need a dog walker- that way I don't have to take the dogs out.

I guess I should go ahead and charge my camera battery. And find something for dinner. And take the dogs out.

The cabinets can wait till tomorrow.

Or the next day.

EDIT- the clouds rolled in and I decided not to drive out for sunset photos. 

Sunday, March 16, 2014

A new look... brought to us by fake insomnia

Tonight brought me a bout of Fake Insomnia. It started with the itching. You know the "thousands of hairy-legged spiders" itch thing... well, it was all over this time, not just my legs. It was annoying, at first. Then it intensified and the itching went from annoying to infuriating. I finally got out of bed.

I've been planning on re-doing my blog's look for a few weeks now, but I procrastinated myself out of it for all that time. And now here we are. I'm listening to a mix of house music (that I discovered because of DJ Phoole) and a Flo Rida CD. (fun fact, when I ordered that CD, I texted my youngest kid and said: "I just ordered a Flo Rida CD, is that weird?" She replied with: "A little..." and later told me that one of her friends thinks I'm cool because of this CD. Her mom would never listen to music like that! I'm the cool mom again! Yay, me!)... and yet, I almost procrastinated myself out of it again tonight. I hassled a young friend of mine over on Tumblr (something about cooties and how boys are gross), I stalked a few of my friends on Facebook, ate a granola bar... then I just had to get to it. This needed to be done and no amount of cootie-teasing and Facebook-stalking was going to change that...

When I started all my blogs- back in the day- I set a lot of it up so my mom could read them. She preferred a darker background and a slightly bright font. Well... I decided to clean up the overall look and make it brighter all around. Give it a bit of an update. Make it sleeker.

So, here it is- my new blog look. The same layout is still here, all the brackets/links/gadgets and such are just where they always were. The banner image is just something I threw together in Photoshop and it took about a dozen tries to get it centered the way I wanted it.

I hope you like it... I plan on doing the same to the Conversations with the Disabled Guy blog as well.

Wednesday, March 12, 2014

Questions and Answers, translated

Over on my Facebook, I don't want to be "that guy". I don't want all of my status updates and posts to be all whiny and seemingly attention-seeking. I mean, in general status updates ARE attention-seeking, because c'mon, do you really care that I can hear my clothes dryer while wearing my hearing aid? But I don't want people to give me head-pats and imaginary hugs for having this stupid disease. I don't mind when I get actual hugs (even if I'm having a flareup and it hurts, because that happens sometimes) and I hate to put on a smile and get medical advice from people because their mother's sister's aunt-in-law tried something and it worked for them. (c'mon, everyone with a chronic anything has heard THAT story before).

But in real life... there are times in my life when I have to leave the house that don't actually involve putting on awesome clothes and hanging out with several hundred people dressed in similar (and better) awesome clothing. And, sometimes, there are people out there who ask seemingly benign questions. And I've mentioned this before- but I'm too lazy to look up my own blog link, so I'm probably going to repeat myself a bit. But these people, they generally don't really want to know the real answer to the questions they ask, because they work in the industry that requires them to ask the questions or at least be polite (which sucks for them, because not everyone is like me or my kids and those jerks tend to take out frustrations on those people despite them having no control over what's happening).

Let me get back to the questions. The most loaded question I get these days is: "How are you?" And it comes in a few varieties- "How are you?", "How is everything", "How's things?", "Everything good?"

Of course, I answer these questions with: "Fine" or "Good", even the slightly truthful: "Okay" but things aren't okay. On any given day, I could answer with: "Well, I'm still feeling sad that my dad died. And I also feel guilty, because my mom died two years ago and I don't remember it being this hard on me. And I know that's because I still had Dad around, but the guilt is still there. I just really miss my parents."

Today's answer would have been: "Well, my skin is aching like a giant scraped knee and I'm feeling slightly itchy, so you can imagine how thrilled I am to be wearing clothes right now" but I didn't think that was the appropriate thing to say to the cashier at the grocery store.

"I have a red-hot railroad spike being hammered into my heel with every step I take."

"I considered going to the housewares aisle and using that ergonomic handled vegetable peeler to peel off the itchy layers of my skin."

"My muscles hurt so much right now that I feel like I'm on fire. On fire and recently hit by a truck. Probably a truck full of broken glass and gasoline, but otherwise I'm fine."

"The pain in the bottom of my foot feels like my tendons are being pulled so tight that they're shredding apart..." (alternate answer- " tendons feel like they're being sawed on with jagged glass.")

"My legs are swollen. These are boot-cut jeans and I can't feel where the fabric ends and my leg begins."

"I really wanted to take a nap in the bin full of pillows over there."

Well, that last one could be said by anyone, I'm sure.

There are only a few people in my life that ask me how I'm doing and I'm sure they want to really know. A couple of them carry swords, so if I'm not near a housewares aisle, I could still get my skin flayed if I were having that type of flareup near them. We could do a demonstration for the patrons. Educational! But for the most part, nobody wants to hear the real answers. And I can't say I blame them. I don't want to tell those real answers to most people.

Be warned- good people of Earth- if you ask me how I'm doing and I give you the bland "Fine" answer and you ask how I'm REALLY doing because you really want the honest answer- I might start crying. If you hug me, I can't guarantee that I'm going to let go. Things are gonna get awkward, people. Very awkward. But don't worry, no matter how awkward things get, rest assured that I leave my house fully clothed no matter how much my skin hurts. Because that's a level of awkward that even I can't deal with.

I leave you now with a mobile phone photo of how I sit while watching TV.

Monday, March 10, 2014

Sleep. Sleep is for the weak!

I am actually sleeping. Not right now, of course, because sleep-blogging is a talent I don't possess. I barely have a talent for blogging in general, but I digress.

I'm not sleeping well. I'm not at the level I was pre-diagnosis, where I was waking up every 60 to 90 minutes, but I can tell I'm not sleeping very good. When I go to bed, I don't sink into my bed with the slightly gushy feeling of someone on muscle relaxers. I don't know for sure if I'm waking up like before, but I know I'm not restful in my sleep. I've woken up having night sweats (yay, peri-menopause!) and I've slept through my alarms- yes, plural. I have four, set ten to fifteen minutes apart. And then we did that "spring ahead" thing and my brain is just laughing at me about THAT. I'm tired, but in that "I'm not sleeping enough" way and not the "I have a chronic illness so I'm going to lay here on the floor and cry for a while" way.

Today, I woke up about an hour after my final alarm and that was after going to bed by 1030 PM. When I tried to sit up, all my muscles were aching. My important joints (elbows, shoulders, hips- the "big" ones) felt like they were being pressed together and my feet weren't even on the floor yet. Even my abs hurt. My abs feel like I've been doing crunches. My muscles are achy and my joints are sore, and my abs feel sore and tight.

I've come to one of two conclusions.

1- I secretly work out in my sleep. I say "secretly" because even I don't know about it.


2- I am secretly a superhero at night. And apparently, last night, while on my patrol, leaping from rooftop to rooftop and standing dramatically on building ledges with my hands on my hips as I surveyed the city's skyline, listening for a mere mortal to cry out for help, I obviously got into some kind of fight with a supervillain. It couldn't have been my archnemesis, though, because I didn't wake up on an oddly elaborate setup with a conveyor belt and a laser at the ready to cut me in half.

I can only hope that it is Theory 2 because being a superhero would mean I get to wear cool clothes in the off-season, but waking up all sweaty for no reason makes me lean to Theory 1...

So, those are the possibilities. Working out at night or Superheroing at night. Because who needs sleep?!  I mean, besides me, because I'm exhausted.