Wednesday, May 29, 2013

The Exhaustion. It's so tiring.

This is gonna be a short blog post. Stop cheering, I can hear you all the way over here. If you keep it up, I can keep typing. You know me...

Let me dive right into it. Mostly because I'm so bloody tired. The Exhaustion... how bad is that feeling of tired? "Tired" is a nice way of putting it. Along with the fatigue is a little pain, but the pain is negligible by comparison. 

This was my morning- I got up after turning off four alarms. (I use my mobile phone as my alarm clock and I have four alarms set in a 35 minute window). I got up, staggered to the bathroom to put on my ha-ha-workout-clothes. I managed to get downstairs without falling down and I took the first of my stay-alive pills. 

I normally wait at least a half hour between my thyroid pill and my other stay-alive pills because I was told once a million years ago that I should take it on an empty stomach. But today, I got up after ten minutes and took the rest of my stay-alive pills (three of them are vitamins, the others are for my blood pressure, allergies/asthma, and acid reflux). Then I opened the cabinet to get my breakfast. Cheerios. Because gross stuff is good for you (not a fan of Cheerios). 

But the very act of pouring a bowl of cereal, getting the milk for it, walking back to my desk and then actually eating the cereal seemed too daunting a task. I usually keep some Special K cereal bars on hand for such days, but I was out. 

I had Frosted Cherry Pop Tarts for breakfast. I had Pop tarts for breakfast because cereal was too hard. I ate almost all of the two tarts and gave about a third of the second one to my dog- Gypsy. I took the dogs out- I think they love the fatigue days because I tend to stand on the deck without constantly telling them to hurry up. If I don't remind them what they're out there to do, they'd just run in circles eating grass and playing till they fall over. After I got them back inside, I went back to bed for a nap. 

I was up for less than 45 minutes before I succumbed to the fatigue. The exhaustion is worse than the pain sometimes. I mean, the pain sucks, don't get me wrong (today's pain, in case you were wondering, is about a five or six), but I can deal with the pain. I can't always stay in bed and nap. Also, I can take pain meds if I have to, but increasing my caffeine intake helps not at all for the crushing exhaustion. 

Consider yourself lucky if you don't have this disease. You know how you get tired at the office or in front of a class or digging that ditch (I don't know what you do for a living)? You yawn and stretch, let out a little groan, maybe stand up and walk around your office... or ditch. You feel a little better and you feel like you can go on. I can't do that. When I stretch, it hurts. Yawning sucks in general because it doesn't help (and I keep doing it now because I keep typing the word "yawn"). And if I get up when I'm this worn down, I'm going to shuffle-walk my ass to bed. 

Well, look at that... this wasn't as short as I expected. I told you to stop cheering about that, but you didn't listen, did you? Yeah, go think about what you've done. 

Thursday, May 23, 2013

The new flare-up from Hell. They can't ALL be from Hell, can they?

I started having this flare-up on Monday. At first, it wasn't an issue, because I figured it was Faire Weekend spill-over. I always hurt the Monday after a faire weekend. But, as the day went on, the pain got worse and worse instead of better. Tuesday wasn't terrible, but I felt awful. Just that all-over achy feeling, sort of like the pre-flu. Wednesday sucked. I took pain meds all day. And on all those days, I had to take a nap in the morning. I had no choice. It was either "go take a nap for an hour" or "fall down on the floor and be smothered in Chis" (say that out loud).

Then we have today. I woke up in agony. And I mean agony. I had pain all over my body. From my toes to my head and just about everything in between. I couldn't even walk. I had to shuffle. The only way to describe that astounding amount of pain is to liken it to a sprained ankle... if that sprained ankle pain is ALL OVER YOUR BODY. It was an intense, constant pain. Every step shot a jolt of pain through my legs. My ankles felt like I had actually sprained them (I haven't, by the way. And they STILL feel like that now, late in the evening).

I couldn't take daytime Vicodin though. I had to run some errands and go to the grocery store. I hate the whole upright, living, doing, clothing thing on flareup days. My skin didn't just itch today, it felt like I was on fire. My skin still feels hot, almost like I have a fever, but its only a fever I can feel. If you were to touch my skin- that is, if I let you close enough to me to try and lay even the gentlest finger on my body- it would feel normal. I'm not sweaty, I'm not actually feverish. And as if that wasn't fun enough, the itching is doing that thing. Those hairy-legged spiders are trying to escape through my pores again.

When I got home from my errands, I just sat down at my desk. Within an hour, my body decided that my super-soft sweater was sandpaper and that my jeans were designed by the same guy who created wool blankets for the US Army. The neuropathy in my feet decided that my shoes were made of bear traps. I went upstairs and crawled into bed, leaving my clothes in a random pile near my dresser. I wasn't tired, I just needed to go starfish and even out the pain or the gravitational pull. I did end up taking a short nap, though. Not on purpose, it just happened.

I'm a few hours into my pain meds and my body finally feels a little better. The agonizing edge has been dialed back a little. Now instead of "agonizing", the pain is closer to "terrible". The itching level is at "insanity" and the fire-skin has cooled to a Girl-Scout level as opposed to "arsonist".

Tomorrow, I have to take it easy. On Saturday, I'm doing a charity photo shoot as the second photographer and since its a charity for a woman's self-confidence, I'm taking part in it. (The Traveling Red Dress- my daughters, four years apart in school, both had red prom dresses and they're going to donate those dresses to the cause. Oh, and they'll be at the photo shoot too). But if I expect to function on Saturday, I have to take it easy tomorrow.

I could do without the sprained-ankle feeling in my ankles. The thing about that pain is that it doesn't hurt if I'm not standing or moving my ankles. Right now, I'm in that proper typing position- sitting up straight, wrists resting on the padded thingy for my keyboard, and I have one foot placed slightly ahead of the other, flat on the floor. My ankles do not hurt. But if I go to flex my ankle or rotate it (one of the moves for reducing swelling in the legs), it screams in agony like I actually sprained it.

There's a comedian (Greg Behrendt, actually) who jokes about hurting oneself while one sleeps. Of course, his version is a lot funnier than mine. What do you expect? He's a comedian. I'm a fat housewife with fibrofuckingmyalgia and an obsession with renaissance faires and photography. (speaking of renaissance faires, we're 44 days from OPEN WIDE THE GATES!).

Part of my errands today was that I had to get my dad's mail (he's out of town again). While there, I weighed myself on his scale (I don't have one, he has a fancy one from the doctor that does everything but point and laugh at you). I haven't lost any weight, pounds-wise, but my clothing feels looser. I don't know why, but I wanted to mention it in case I fall into a sinkhole or something. "Well, Patty didn't stop-up that sinkhole like we expected... has she lost weight?"  No, apparently not.

Today felt worse than any of the other days that I've complained about through this blog. The pain was exacerbated by the fact I couldn't take any pain meds. I went through the grocery store almost on autopilot. There were a few times that I slowed down so much that I had to tell myself to keep moving. "If you fall down here, it will be embarrassing and they'll probably call an ambulance and you can't afford that. Plus, you have dairy in your cart. It'll go bad if you fall down here..."

I rationalize with myself. But I really did just want to stop walking and let gravity have her dirty way with me. She's pulling down on me awfully hard, she must want me closer to the ground. That's the only thing that makes sense.

I have no idea if gravity is a dude or a chick. Either way, Gravity is a bitch.

Here's hoping that I feel good enough to enjoy Saturday. My part of the red dress thing is that I'm wearing a skirt that I've never worn in public. And it shows my legs. I haven't shown my legs in a skirt since before 2004. How do I know that? Because in December of 2004, I started having issues with edema. My legs still swell up. Sometimes quite bad, sometimes not at all. I'm going to wear that red skirt with a red shirt and I'm going to rock it as hard as I can.

Right now, my only issue is footwear. Because of the pain and edema, I can't wear sandals. All I have are different styles of Doc Martens boots.

One good thing happened today. I unintentionally had a "Fro Knows Photo" theme going on with my 365s this week. Monday, I was wearing my favorite "I shoot RAW" T-shirt.  Tuesday, I put on my new "I shoot RAW" hoodie (Mother's Day gift to myself) for the photo. Wednesday, I was wearing my "FroNation" T-shirt (I have seven "I shoot RAW" shirts and the FroNation shirt as well as the new hoodie).  As I started my drag-shuffle to go lay down, I remembered I hadn't done my 365. So, I picked up my camera and grabbed my "I shoot RAW" bracelets (they come with the special deal orders. I gave one away this weekend). And since I was laying all starfished in bed, naked under the fleece blankets, alternately dying of the fire in my skin and shivering from the chill I got when I uncovered, I got artsy with my 365 and managed to stay within my unintentional Fro Knows Photo theme.

99 of 365 Part 4: Staying with the unintentional theme

So at least there's that... and my pain meds tonight DID take the edge off my pain. Here's hoping I can get through tomorrow and enjoy Saturday.

Who am I kidding? Pain or no pain, I enjoy taking photos. I just really want to wear my Dr Martens Triumphs instead of the sandals.

Tuesday, May 14, 2013

Housework in stages...

Let me make one thing clear- I hate all housework. I've always hated it. "What is the chore you hate the most?" ALL OF THEM! I hate them all equally.

But, early in my life as an adult, I kept a clean house. I see my daughter's apartment and I remember that my house used to be clean. To me, back then, "cluttered" was having the mail visible on the table. At age 18, I became sick for no explainable reason. Six months and one hundred pounds later, they figured out I had a thyroid disorder. I started taking the medicine for it and BAM! Clean house again.

And when I had kids, the house was as clean as one could get it while having kids. I picked things up, I vacuumed. It was no big deal. I still hated it, but I could do it. I'd begrudgingly drag the vacuum out and shove it around the floor. I'd pick up kids' toys (or they would, I didn't care who did it), I'd put the dog toys away. Drag that stupid vacuum around.

The disabled guy started doing some of the housework and I will tell you, I didn't mind at all. I still hated it and if he was willing to do it, who was I to stop him? Eventually, we reached a balance where the house was mostly clean- clean enough that I wouldn't be embarrassed if my parents came over without calling. We never had to have that moment where we tornado through the house, throwing everything into a closet and leaning against the door to get it to close just as they walked into the house. Which is good, because this house has no closet downstairs. And I think they'd notice if I piled everything up and threw a drop cloth over it.

Then, this stupid illness happened. And things slowly went downhill. And he started leaving me for four and five months at a time. I can't do housework anymore. And even though I absolutely still hate housework, it pisses me off that I can't do it. I have to do it in stages. I wait till I'm two hours into my pain meds so I can stand for the ten minutes it takes to do the dishes. I vacuum and then have to rest for hours after or I end up hurting the next day, wondering to myself why I hurt like the Hulk and I were sparring partners. Then I gimp past that vacuum cleaner and remember... "Ohhhh, that's right. I danced with the Dyson in the pale moonlight..."

That's what that means, right? It means I vacuumed before I went to bed last night, right? That quote would have been waaaay cooler had I owned a Dirt Devil instead of that Dyson, wouldn't it?

So, the disabled guy is coming home today (allegedly). And I haven't done anything to the house that needs to be done. I've been doing my usual stuff (taking the dogs out, did the dishes, had to rest a lot, I'm exhausted, and my muscles ache so hard that I can't stretch my arms over my head). But I need to pick up the dog toys and vacuum. And I can't. I could pick up the dog toys, but then while I was resting, they'd just drag them back out.

I wonder if I could train a dog to push a Dyson around?

OH, that's a ridiculous thought. The dogs are terrified of the vacuum cleaner. They'll lay down their tiny furry lives to protect me from the shadow that was created by a butterfly flittering by the window, but when I wield that noisy monster, I'm on my own. They stand behind me, barking at it. "WE GOT YOUR BACK, MOM! YOU GO AND WE'LL BE RIGHT HERE!"

Like when the cats are in the bathroom while I'm in the shower. "HOLY CRAP, MOM! ITS ALL OVER YOU!"

What caused this flareup? Well, yesterday morning, we had frost on the ground and it was around 32° Fahrenheit. It got up to around 56­°. Today? We're at 84° right now (121 PM). My body is not happy with that drastic change. Most of the pain is in my hands, arms, lower back, and shoulders today. Probably because yesterday I did the bedding on our bed. The disabled guy's side of the bed was covered in cat hair, so I had to do the blankets and comforter.

And I know, I can hear you asking: "Why don't I make the kids do it?"  Well, two of them don't live at home. The one who does is gone most of the time and sleeping when he's not. (He works nights, sleeps in the daytime). I suppose I could make the kids clean the house, but for some reason, luring them home and then handing them the broom seems a little, I don't know... bitchy.

So far today, I managed to do the dishes, I put the sofa blankets in the wash, I've taken the dogs out a few times, I made lunch. And I've looked at the vacuum and sighed heavily a few times.

That counts, right?

Sunday, May 12, 2013

May 12th is "Fibromyalgia Awareness Day" and it is also Mother's Day... it only makes sense that I'm having the Mother of all Fibro flareups, doesn't it? This flareup was brewing for a couple days. The other night, I was up till almost 2 AM because my pain meds and muscle relaxers failed. I took a second dose of pain meds at midnight and around 130 AM, I finally started to feel better and tired enough to sleep. Yesterday wasn't terrible, but it wasn't good.

I woke up on this fine, sunny, windy day in agony. All my joints hurt. Well, not ALL of them. My knees aren't sore. But my ankles and wrists- they feel like I sprained them, but I haven't. My elbows ache like I've been playing tennis, but I haven't. In fact, I haven't played tennis since it was required in gym class, so... since 1983. That's an awful long time for tennis elbow to set in, don't you think?

Along with the wrists, the pain is radiating down to my hands and fingers. Typing hurts, but I'll soldier on, because I'm such a badass. Even though I feel terrible and would rather just sit around in loose yoga pants and a giant "I shoot RAW" T-shirt, I had to get dressed and go to the store. That lactic-acid-strain feeling I mentioned in my video from last week is in full force today. A half gallon jug of milk was so heavy that I had to use both hands to lift it.

I don't normally give tips and advice in this blog. Its mostly just a place for me to bitch without annoying the entire world ("the entire world" being "my Facebook and Tumblr Friends"), but I will say those reusable "green" bags with handles, those are awesome. I can carry four of those (even heavy ones) at one time, making getting the groceries into the house much, much easier. Way better than paper or plastic.

And since I just gave some advice, let me link you to a Facebook page called Chronically Crafty. Entertaining and informative. The person who runs the page suffers from fibrofuckingmyalgia, just like us! And if you don't have it and you're reading this- just like someone you know who has it! She asked for links today, for sharing and raising awareness, so I gave her the link to last week's video blog post. She has a Tumblr too, which is how I found the Facebook page.

I have no way to end this on a lighter note, but since it is Mother's Day, let me just share a bunch of random photos of my kids... because without the kids, I wouldn't be a mother. Mom. Mumsy, even.

The kids

This... yeah.

Jason doesn't like girl germs

Girls: "I don't know what to do with my hands..."

So much is happening here

Gregg's adventures at Collge

My Girls!

Poor Kat...

Picture 2 in day 118's triptych

Jason calling out numbers and colors for no reason

"F**k y'all, I'm gonna sit here."

Jason (my son)


My youngest child

Jason in his Icon motorcycle Jacket

Tuesday, May 7, 2013

Pahz complains about Fibro- now with Video!

I've always thought that "vlogs" were stupid. I don't mean the celebrity things or the ones with instructional videos, I'm talking about the normal, everyday people who do a video blog because apparently typing is just too difficult. They ramble for fifteen minutes about how their mother hates them and the cat puked in their shoe. Doing a video seems about as lazy as one can get. Well, aside from doing an entire blog post in text speak.

Well, I did some video here... because I've been asked a few things more than once. And like I say at the start of the video, you can only convey so much through typing. In this video, you'll get to see my poorly-lit face (my hair is in my eyes a lot), the fancy "background" that is actually a curtain (I use it as photography background), I drink water a couple times, I talk with my hands, but you can't always see them, and I get teary near the end. I mention that I took my pain meds later than normal- it was about 45 minutes later than normal.

I left out the itching skin thing. I have been lucky enough not to have that problem for a couple weeks now, so it is understandable why I forgot. So, enjoy the video. Or don't. It doesn't matter to me.

And because I mentioned taking my pain meds late because I was taking photos, here are a few of those photos.

Sunset on the river

Sunset on the river

Sunset on the river

Sunset in the park

Sunset on the river

Water hazard in the evening