Saturday, January 18, 2014

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-




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