The New Normal- NO! This isn't normal!

I read an article- and I don't remember where- about how things become the new normal. When you have a chronic illness, you fight for a while, then it overwhelms you and you accept it. And then, that thing is now "normal" in your life.

I've had to accept a lot of crap as "normal".

Born deaf in one ear. There are so many little things related to this that are difficult to explain. From having to adapt by focusing on people's mouths when they speak, to having a speech for each teacher on the first day of school as to why I had to sit up front. Always Normal.

I started going grey at 17 years old. I eventually started dying my hair every four weeks. I haven't seen my natural hair color in at least ten years. Probably more. Fine. New Normal.

Blood pressure pills every day? Fine. New Normal.

For more than three years in my 30s, walking with a cane was normal.

My feet went bad and I can no longer wear cute, girly shoes like strappy sandals or high-heeled pumps. Fine. New Normal.

Pain in my hands made it almost impossible to hold a pencil (or any drawing/art tool). I had to stop drawing and painting. Fine. I went back to the photography. Normal.

The pain I've dealt with in my feet is so normal to me that I don't remember what it feels like to not have sore feet. And now here we are... another new normal. For weeks now, I've had a terrible pain in my right hip. And it isn't arthritis- I know arthritis pain. It is definitely the fibrofuckingmyalgia. It hurts the most after I've been still for a while. Sitting, standing, in bed- wherever I've been still. Those first few minutes after I move again are agony. An example: this morning, I had to get up from this desk, go take the rest of my stay-alive pills and get breakfast. I cried from my desk to the kitchen from the pain. I tried heat on it and it felt great- till I moved. I tried ice, but that just made me hurt more and in a larger area. Some days are worse than others, just as some days are better than others. But those bad days- those bad days have no business existing.

The bad pain days are bad enough- right? I mean, pain sucks. And pain that pain meds don't even touch is worse. But on top of the shriekingly bad pain, I get more emotional. The stupidest things make me weepy. Things that have no bearing in my life. Commercials. Movies I've watched a dozen times over. Song lyrics. And it doesn't even have to be the whole song- it can be as simple as just a line in a song. (here's an example- this song- "A Way into Your Heart" by Steam Powered Giraffe- kills me every time. And the video even more. The line: "Lately, your love of life has been fading..." rips my heart out. Oh, and if you really want your heart thrown against a wall, listen to "Turn Back the Clock" on that same album).

Where was I before I started crying at that song? Pain, that's right. Always about the pain.

The New Normal has become daily pain meds. I've been having to take pain meds in the morning lately. And at night (as usual). I'm contemplating doing my muscle relaxers the way I did them for faire- three times a day instead of just in the morning and night. Right now, my prescription for the muscle relaxers is one pill in the AM and two in the PM. During faire days, I take one in the AM, one again at noon, and then one at night before bed. Same dose, just spread out evenly.

But I don't want to make that the new normal. I hate the new normal. And there isn't much the doctors can do for me. The weather is a huge trigger for me and aside from living on the space station, there isn't any way to control my atmosphere. Here's our weather for the last several weeks- cloudy daytime, clear as a bell nighttime, snow, clear skies but bitterly sub-zero temps, humid and cold, humid and warm, rain one day, snow the next. We have a snow-blower, which makes things easier in general, but I'm still in agony when I'm done. Usually radiating from that pain in my hip. (right now, my whole body aches from pushing the snow-blower around).

And I hate to say it- but there have been days where I have wanted to go outside and take photos, but I know how I'll feel if I do, so I didn't go outside for photos. That means I let the fibro win. And I hate that. Because if I keep doing that, then it will become the New Normal. But, there have been days where I forced myself to do SOMETHING. I can't miss every opportunity. During that week we were getting -30° Fahrenheit for our high temps of the day, people kept posting links to the frozen bubble photos on my Facebook (18 times in less than a day). I couldn't do it because on top of those bitter cold temps, I had a cold. My first chest cold in YEARS. And since I'm also an asthmatic, I couldn't go outside for long periods of time. When I took the dogs out, I had to cover my mouth and nose with a scarf.

I felt like I was going to rob a stagecoach every time I went outside. There were fifteen days when I didn't take any photos other than my 365days self-portrait. (and some of those were absolutely awesome, because dammit, I needed an outlet!). I did a lot of themes from a group I'm in called "We're Here!".

I'm going to share a few of them as links, just so it doesn't clog everything up with huge photos (like my snow-removal rant two weeks ago).

Day 325- A Nighttime Portrait

Day 331- Binary Red (the theme was "Binary Love", so we had to do something related to binary code). This photo is my most popular photo on Flickr. Ever. In the first 24 hours, it had over 7500 views. This was a last-minute inspiration and it worked out great. As of the typing of this sentence, it was at 10,601 views. I cried when it hit 10,000. Because, you know, emotions and pain. (I'm selling prints of this photo in my Etsy shop)

Day 333- Rockin' Out I put my own twist on the "heavy metal horns".

Day 337- The Doctor Will See You Now The theme for this was "Twisted Flickr" and I am now officially out of red food coloring. And there's a comment on that photo by "Studio d'Xavier" that made me cry. This was also a last-minute inspiration, like "Binary Red" was... and it turned out great too.

Day 338- Setting things on fire Because sometimes, you gotta spin some burning steel wool to feel better.

So, despite being trapped indoors by the weather and fibrofuckingmyalgia and general ennui, I did manage to be creative a little. And also- because I can, here are some random snow-related photos.










And, here's some size reference for how tiny those snowflakes were...



I've also become obsessed with how the birdhouses look with snow falling all around them. I've taken many photos like this one from New Year's Eve.



And here's one from today-


And, a Christmas ornament in the snow (from New Year's Eve)-


And... one from today-

Because they made it into a photo, it's more fun that way!

I saw this photo floating around Facebook this week. I made a mental note (ha-ha-ha-haaaaaa!) to go back to it so I could share it and whine a little bit. But, like all things I mentally note and not actually note, I forgot about it. So, I did a quick Google search and found it again. I had to make it bigger, though, because it was tiny. And in resizing it, I had to fancy it up a little.

YOU'RE WELCOME.  ♦♦♦♦click here to view in a larger size♦♦♦♦



Wow. That's huge. Well, at least you can see it. I made it almost twice the size it was, dragged and dropped it onto a plain black background and added the blue glow before flattening the layers. Not that big a deal, but at least it isn't the poorly cropped thing that it was before.

So, let's talk about this pain, shall we? Of course we shall, that's what my blog is about, isn't it? Yes, I appear to be talking to myself again.

1. Knife-like pain: Yup. I get that mostly in my feet and sometimes in my hip. And it isn't localized in that one spot. It jolts and shoots through that area of the body as though I'm being stabbed- not unlike a knife! See? You know where they got that name then.

2. Hyperalgesia: That's the increased response to painful stimuli. If something hurts you, it hurts me worse. Stub your toe and let out a string of profanities and even get a bit of tears stinging your eyes- and for me, it hurts so bad that I can barely breathe enough to stay alive, much less shout out a string of profanities. Earlier today, I stumbled a bit and ended up scraping my elbow against the corner area of a door frame. And in a normal person's body, that shit hurts. On me, it felt like I'd peeled off a layer of important skin on a lemon zester. There's no mark on my body aside from a slight bit of redness. I'm not missing any layers of skin. But damned if it didn't feel that way.

3. Allodynia: Painful response to an normally innocuous stimuli. And I hate that description. "Innocuous stimuli" makes it sound like something is gently annoying you and then you react to it by shouting swear words and threatening legal action. "Hey, I took the last cookie." "I WILL MURDER YOU AND YOUR FAMILY WHERE YOU SLEEP!!" That's not the proper response. Really.

What it actually is, however, is much worse. Let's say you were in a Facebook poke war with someone and they took it to the real world. OH IT IS ON, JOSEPH! *ahem* Sorry about that. I just know a guy- you see, this guy I know at faire took our poke war to the real world. And he cheated a lot by sneaking up on my deaf side. And don't give me that line that he didn't know I was deaf. I mean, its absolutely true that he didn't know, but still!

Anyway, here is a photo of myself that I took today (wearing my new Damsel in this Dress bodice). I added a little bit to demonstrate how a NORMAL person would feel a typical poke from another human.




See? That's not so bad. You got poked, deal with it. It didn't even hurt, but you felt it.

Now, here's the same photo, with a little bit added to it, to demonstrate how I feel a normal poke from someone's finger. I added some tears as well, because fuckin' ouch, man.




So, this isn't an exact representation, but you get the drift, I'm sure. And I don't feel like this EVERY single day. But I do have days like this. Today is a day like this. I have an all-over ache in my muscles and even the slightest pressure- say from a four pound, black and white cow-print dog with tiny feet- causes a radiating pain wherever she put those tiny paws on me.

[she's a beast!]


4. Parethesia: That's the pins and needles feeling when your foot falls asleep. I don't know why they use the word "numbness" because that implies you can't feel anything. But you know you can- you know the feeling I'm talking about. Pain, tingling agony, and you stand up and try to put weight on it and you almost crumple from the lack of feeling, yet painful agony.

Now, imagine that, randomly happening, for no reason, even when you're using the body part. If I stand up too long or stand in one position too long, my feet do this. My hands do it too- like if I'm holding something (like a camera or a large fancy basket with a camera in it). If anyone has seen me taking photos at the joust, you'd have witnessed me shifting my weight a lot or even holding onto the rail for stability. What you can't see under my long skirts is that I'm standing on one foot and shaking out the other foot.

5. Randomly Roving Pain: Well, they were sure thinkin' fancy when they named that pain, weren't they? But yes, I get this too. I refer to it as "hot spot" pain or "My hot spots are flaring". Sometimes I feel in my hip muscle, sometimes in my foot. It seems to happen to me in the larger muscles than in a smaller muscle. Like the hip or thigh and the shoulder muscle. I also sometimes get what feels like a sprain in my wrist and that can last for an hour or it can last for days. And during that time, there's no swelling, there's no bruising, but I have no strength in my wrists and hands just like I've had an actual sprain.

6. Sparkler Burns: Have you ever been burned by a sparkler? Me either, so I don't know why they called this pain that term. I bet it hurts a lot, no matter what chronic pain disease you have or don't have. But this is the painful tingly sensation that when it gets scratched or touched, it can trigger that pesky allodynia pain. In me, that would be the itching/burning skin thing that I refer to as a million hairy-legged spiders all trying to break-dance out through my pores. I hate that shit.

7. Rattled Nerves: This one is an all-over sort of thing, related to anxiety. I am very, very fortunate not to suffer from depression or anxiety, so I don't usually have this problem. I do have times when I'm all-over-body-aching and I feel as though I'm coming down with the flu, but it doesn't cause me any mental distress like the description implies. I have bouts where I'm short-tempered for seemingly no reason and instead of merely answering a question, I bark out an angry, profanity-laced reply that required no hostility on my part. (If I've done that to you, I apologize).

So, there you have it... the seven kinds of pain with some infographics added for fun. This goes sort of with the post I did a couple weeks ago where I state that I am "always in some kind of pain". And that little infographic at the top doesn't even touch on the fatigue that kicks us in the face and wrestles us to the ground. That shit is totally bogus. *feathered hair flip* Totally, dudes.

 Right now, as I type this, I've had my nightly Vicodin (three 5/325 mg tablets) and muscle relaxers (two 10 mg tablets of Cyclobenzaprine). And my hands have that Parenthesia thing going on, my right shoulder is having a bit of a flareup from that "roving" pain, and both arms and hands are doing the millions of spiders thing. The good news is that all those pain meds I've taken make me not care. And in a couple hours, I'll be blissfully asleep.

At least, I hope to be. I have to drive down to Rockford tomorrow and shoot some product photos again.

Apparently, I forgot how this disease works...

Saturday at Bristol, I did a lot of painting. A little bit of lifting of painted things, but for the most part, I painted. And Sunday, I painted more. On Sunday morning, though, before I was even dressed, I tripped on my stairs and banged my forearm against a corner on the wall.

Why am I telling you all this?

Because Sunday I could feel things starting to drag me down. By the end of the day, I felt like a giant sloth. Sloooowly dragging my body across the road. Gravity pulling me down to the ground and then poking me with a sharp stick. Monday was downright miserable. Tuesday even worse. I'm in agony. I feel exhausted and everything hurts. I feel like the pain is radiating from my feet and then spreading through my body. By the time it gets to my head, the pain has changed into mind-numbing exhaustion.

Monday, I kept wondering what I had done to myself to cause all this pain. I mean, I painted. That's all I did. I wasn't hauling heavy things around. I wasn't walking the entire length of the faire multiple times. I was sitting on my ass, painting benches and other such wooden things. I tripped and banged my arm, but surely that can't be what's causing all this pain.

Today, I took the dogs out and I was leaning against the railing on the deck. Let's go... I'm tired... I have to take a shower and get my day started (we're going back to Bristol today, to help in the garden again). And I suddenly remembered... This disease does this. How in the hell could I forget that this disease makes its own flareups? I mean, really. REALLY.

I've been officially diagnosed for the last three years. I've dealt with symptoms for at least eight years. And I stupidly allow myself to fall into a false sense of security when I have a slew of good days.

I'm in a full-on flareup and I feel terrible. But,  I'll have a steady flow of Vicodin in my blood today and that's cool.  And, I get to go to Bristol today and I'll see some people I don't get to see except for at Bristol and that's cool.  And if I keep this steady flow of Vicodin in my blood today, there will be a lot more things that I think are cool. And that's cool. (also, don't worry, I'm not driving to Bristol. The Disabled Guy is... and that's cool).

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.




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.

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.