February 7, 2011
Most people don’t understand how big a big accomplishment is to someone who’s facing any kind of disability, much less the agonizing chronic pain I’m fighting anytime I’m awake. Actually, even in my dreams I have pain now. Sleep can no longer be the hiding place it once was. It’s just no good when the nightmare zombies can catch you because you’re having a high pain day and can’t escape fast enough hobbling along on your cane!
Back on the big accomplishments though because zombies eating the weakest members of the human herd is rather lame. My big accomplishment is cleaning. I’ve been living like a slob since the first wreck in 2006. I moved just before I was injured, so most of my stuff was still in boxes. The place I lived before I moved was clean and obsessively organized, but very cramped and not in a very safe spot. Someone had tried to carjack me in my own parking lot the same week my landlord decided to raise my rent. That’s a lethal combination to anyone trying to keep their renters. My my pain hasn’t let up since and all my minor gains toward normalcy have been full of other requirements, like trying to graduate.
Now that I’m past the OxyContin nightmares of November and I have a new doctor who is actually willing to treat my pain rather than ignore it, I have a few functional hours each day that I didn’t have before. I’ve been in a flare since the American Idol headache started, but in my functional time before that went south and sent me back into last year’s pain, I cleaned. I even unpacked some boxes that hadn’t been unpacked in several moves. That’s a HUGE deal for anyone, but now try to do it in pain that’s described by many people who’ve been through both as “making childbirth seem like a walk in the park.”
Here’s an afterthought before photo of my bedroom. I’d already started cleaning when this shot was taken. The angle also hides a huge garbage bag of dirty towels, a tower of yarn, paperwork, and random junk as tall as my nightstand, my messy nightstand that was heaped up over a foot tall on the top surface and who’s drawers wouldn’t close, and the disaster spilling from the closet. I wish I’d been able to capture it all in a before photo, but my current living arrangement is cramped and it’s hard to get a picture of everything at once. I’d have to knock out a few walls to do that. So, before:
Now, here are two photos from 12 days later.
I cleaned everything. I even dusted, vacuumed, and steam cleaned the floors. I even washed the blankets on the bed, not just the sheets. How’s that for doing something BIG? I’ve still got a lot left to clean, and my pace has slowed drastically since my headache and nerve randomness has gotten worse, but I’m really proud of myself. It’s not staying quite this spotless, but running the vacuum every other week looks like it should be possible. I can’t tell you how excited that makes me. Heck, I’ve even washed my sheets since this photo was taken on the 21st. I’m thinking once a week clean sheets is something everyone should have.
January 26, 2011
Clearly, American Idol has begun yet again and I couldn’t be more depressed about it.
I consider trying to get better and find ways to function to be my number one priority. I hate being in pain and being not able to have the kind of life I want as a result of my pain and physical limits. Today I had a huge day. I got up early for me, about 7:45 am. I slept poorly and was up every hour throughout the night. I got dressed though skipped the shower due to time and exhaustion. I hate feeling so bad I don’t care how I smell. I made it to the doctor’s appointment on time and as usual, even a gentle exam of my injured shoulder produced miserable results, numbness and tingling down the side of my arm into my pinky and ring finger on the right side that has yet to go away. Imagine the feeling of your foot being asleep, now imagine that you sometimes have to have that sensation for days or weeks on end. It’s not fun, but at least it’s better than nerve pain. I’ll take the tingles over the pain any day.
Then I stopped by the house because I’d forgotten my coupons for Target and made my way to go pick up my prescriptions. I used all my spoons to manage a very large shopping trip. A cart full of $100 dollars of groceries is VERY difficult for me to push, much less load into the car, carry into the house, and put away. I was just finishing getting the groceries put away when I got a call from my physical therapists office asking if my appointment could be pushed up to 1pm instead of 1:45pm. This meant I had less than an hour to get into the clinic. I got the dogs out to potty since I hadn’t had time this morning before leaving. Due to feeling horrible between the standard back, neck, and shoulder pain and menstrual cramps, the most I managed to do was finish putting away the groceries and make a sandwich before I had to leave. I didn’t even get to eat the sandwich. I managed down half of it while driving and making my way into my PT’s office.
My appointment went well as usual; my PT is made of sheer awesomesauce. However, I hurt a ton at this point. Some days even his gentle approach and work is just way too much. I hadn’t even made it out the door when I realized it was time to take a nap. I got home, wedged the last half of my sandwich into the very full (for a change) fridge, and collapsed into bed with my dogs. I was so exhausted I ended up just rolling around for a bit cold, but to tired to get up to get the electric hot pad from the closet. I figured between the dogs and my sleeping hat I’d get warm eventually. I was right.
I fell asleep only awakened by my 4 pm alarm reminding me to take my MS Contin. I have an alarm every 8 hours to remind me to take my pills because otherwise I forget and things get bad fast. By about the 10 hour mark I feel like I’m surely going to die from the pains in my neck. Not good, so alarms it is. I was so tired that I just fumbled for my pill and took a couple Advil from the nightstand as well. Morphine is useless for menstrual cramps, Advil is the bomb. I was back out so fast I hardly had time to put the glass of water back on it’s little coaster.
Undisturbed, I’d be able to get some of the rest that I so desperately need to heal and to be able to function tomorrow. I love it when I get enough rest that I can function the next day. I’m particularly proud of how much I got done today and would love to have a repeat day tomorrow. Unfortunately, as usual, I was not permitted to rest until my body felt it was ready to handle the world again. I would have loved to sleep until 6am or so, but no. The world has miserable plans for me still.
I wake up in a full on freak out funk due to shrieking in the house. When your damaged neck provides a physical cause for your PTSD symptoms, there isn’t much you can do. All the shrinks in the world can’t help and you’re at the mercy of your nerves. When I’m alseep, I need quiet. I freak if there are sounds in the house, any loud sounds outside beyond the ambiance of a city home, or any movement in the area. Shrieking is a sure fire freak out every time. If I’m out and about and there is a big crowd or any loud things, it sets off the same thing. The only bonus there is, you aren’t woken up too.
When I say freak out, I mean waking instantly covered in sweat and sweating uncontrollably for a few hours until the freak out subsides. I mean physically shaking, and confused, and convinced that the entire world is about to collapse. The sensation is of the impending doom of being crashed into all over again. It’s the feeling of losing everything all over again. I hate it more than I hate the pain. And that says something.
Now I’m doomed to deal with this horrid loss of sleep and the constant stress of these kinds of freak outs for a whole fucking season. American Idol is back. I swear my parents will watch anything just because it is on TV. American Idol, Biggest Looser, and Judge Judy. The list goes on, but those are the worst offenders in my book. The TV upstairs is on 24/7, even when there isn’t anyone on the entire floor of the house! American Idol is worse in that there will be people on that floor of the house, ones that are screaming and laughing just as loud as the television is blaring. It’s not uncommon for the walls to actually shake in the basement.
So now I’m awake, covered in sweat, shaking, hurting worse than I have all day, barely able to focus on anything because of the pain, unable to return to sleep (likely for the entire night due to the way freak outs work), and listening to the worst shit stain to hit American TV since Jerry Springer and Ricky Lake. It’s a pity that people actually watch this dribble for literally hours on end.
I’m constantly getting ragged on for not doing something “that makes money” by my mom. I hate going up stairs because of it. I’m doing everything I can to be able to function and find my place in life given my new limitations. I’m writing knitting patterns, I’ve got an article I’m trying to publish and have two half written books. Even in this shaky pained hell of this night, I’m doing the best job I can. Obviously trying to heal and recover is out and tomorrow is likely to be a wash due to pain and exhaustion, but I’m trying to do something useful with my time. I’ve been cleaning so that I have a decent place to work. I’m working on some knitting at the moment, and I’m still shaking in pain. But I’m trying. I swear people need to figure out that it is entirely inappropriate to rag on other people when they spend the entire day in front of the television watching the biggest waste of energy on the planet.
I wish more than anything I had a place I could go to rest, one far away from the auditory, visual, and olfactory assaults of the rest of the lazy world. Thanks to the shit stain, I’ve now got a migraine as well. I really wish there was any hope for me to heal enough to work a real job and get a place of my own.
Later world, I’ve got to turn off the computer to hide from the lights. FML.
December 7, 2010
This past year I’ve been doing less and less. When I graduated last December I was more functional than I’ve been this entire year. It’s been frustrating to say the least. I feel like I’ve lost enough of my life due to these accidents and having the gains I had made over the past few years falling away was brutal. When I couldn’t keep dyeing yarn or even posting about my exploits it nearly killed what was left of my soul. Being banished to the only (moderately) quiet and dark place I have to go, my mother’s basement, just hasn’t been very satisfying. Thankfully things got so bad this past November that they’re getting better.
Those of my Chronic Bitches and any others who have spent the past few years on OxyContin know exactly what I’m talking about. Having been on the same dose for way too long, I’d been feeling worse and worse with time. To make matters worse, on Halloween night, I started the first dose of the new OP pills. Sure, they may be harder to abuse, but they’re also impossible to digest leaving pain patients to suffer through withdrawal and worse, the full force of the underlying pain they’ve been trying to hide. Thankfully, withdrawal for me isn’t too bad. I get super sweaty (which makes using the TENS impossible because electricity + sweat = all sorts of zaps and hurts), super cold, and my sleeping gets even worse. I don’t get a runny nose or flu-like at all. Some muscle aches, but nothing too horrid. All in all, not that bad and compared to the pain I’ve been living with, VERY short lived. What got me was how bad I hurt. When I hurt like that I thrash about trying to find any position or movement that relieves the pain. This thrashing about only further injures me. I’ve been having minor to moderate thrashing bits for about a year and a half since the old dose wasn’t working anymore and then suddenly, I literally had to use every fiber of my being to stay still because I know the thrashing makes things worse. By the time my physical therapist asked me to wear a cervical collar until we figured out how to get the pain under control I was very happy to wear one.
My old doctor’s office (and their after hours answering service) refused to believe that the change in pills could cause any of this and treated me like a criminal for stating the simple fact that I needed help getting my pain under control ASAP. The urgent care I finally went into (no health insurance makes it a very expensive proposition) proceeded to lecture me, told me that this was my own fault for not managing my meds effectively, that it wasn’t possible for the OP pills to be giving me any problems (unless I was an addict who was snorting them or whatever the fuck people do with them), and gave me some completely useless pills to last me a whopping 3 days, until Monday. Because of course you can get an appointment with a new pain doctor that fast after a holiday weekend!
Thankfully Tuesday morning I got in to see someone my PT had suggested I see. She looked at me a little sideways until she found out who sent me. Then, I actually got to explain my problems to someone who would listen…for over an hour! I kept talking at warp speed. I’m so used to having to get through everything in those typical 4-6 minute appointments! Ultimately, I got put on new pain meds, in a dose that actually works for me without being treated like a criminal. Within 24 hours of starting the new pills, the changes were so dramatic I wouldn’t have believed them if I hadn’t been caught inside of them!
The pain is lower than it’s been since…before the wrecks, 4+ years ago. I still feel the hurt, but it’s shockingly manageable. I don’t feel all dizzy and drugged like I have any time the pain has been knocked down in the past. My brain actually works again! I can keep track of what row and stitch I’m knitting! Last night I pulled out a rather heavy textbook about headaches and was able to follow it through the few pages I was interested in, even though I had a bad headache! I got to go play with my friend’s kids for the first time in months and months. I was just as overexcited as the kids were! I took my dogs on a short walk after my PT appointment last week. The dogs hardly knew what to do. They’ve not really been on any walks since early last winter and even those were rather sparse! I even went to knitting group for the first time since July! I feel like if I can get back some strength just maybe I could work again, probably not a scheduled job because of the fact that pain doesn’t adhere to a schedule, but maybe be a writer or work more on knitting patterns and yarn dyeing.
The most exciting thing right now is that I’m knitting Christmas gifts for my family. I’m way to broke to buy them anything though I’d kill to go shopping. I desperately want to get out and be a part of the world now that I can for aa few hours a day! Sitting in the same cell I’ve been trapped in for the past year and a half just doesn’t feel like it’s got any holiday spirit to it. Maybe I should decorate. BUT, the point is, I’m making holiday gifts for the people I love. I was dreading the empty handed holidays. I’d given up around Halloween. I couldn’t even finish my costume, or my mom’s birthday present. Thankfully, my mom is the kind of person who still gets rather excited when you show her a tangled mess of yarn and explain what you were trying to get done. I may not get all my holiday gifts done in time, but there will be a few!
My goal for this year was to get good enough at knitting that I could start writing patterns. After the first wreck and the loss of work, I’d started working very hard on putting together a set of crochet pretend food patterns (this was way before Tasty Crochet) and then had to quit with the second wreck when I lost the ability to crochet. I found a dog sweater I’d attempted when I was trying to learn to knit in 03. I’m unraveling it as I knit on my brother S’s gift. The progress I’ve made even with the hell I’ve been through this past year is incredible. Just in this one picture, you can see how I used to unintentionally twist every stitch and how irregular my tension was. On the right, you can see the torso of the ‘doll’ I’m knitting. The gauge is an even tight fabric (to hold in the stuffing) and there are no twisted stitches.
I’m very pleased that in this year of hell I’ve made some progress in something even if it seems like the shreds I’d been clinging to of my previous life have all slipped away. I’ve missed several trips this year, including one to Europe. I’ve missed weddings, parties, dates, meals, countless night’s sleep, and just the feeling of the sun on my face as I stroll around with my dogs. But, I’m coming back now. I can’t think of anything I’d rather have this Christmas than this hope that I’m not stuck in the pained state I’ve been in for the past year and a half. Just having a clear head is worth everything. I’m not sure how fast, or even what I should/shouldn’t be doing given how bad the pain the drugs are hiding really is, but now that I’ve got a spark of strength and the hope that there is someone new who actually believes in helping me through my pain rather than ignoring my gradual decline, consider me back.
August 10, 2010
I did some dyeing this week, just for my readers. I wasn’t really in the mood at all. Sometimes the pain (both physical and psychological) can be so much you don’t really want to exist, much less drag yourself from bed to do something fun. Needless to say, this week’s yarn is a little dark compared to the last post 2 weeks ago of bright, light summer colors. Depression and bright colors just don’t blend well. I’ll get the picture up as soon as I sleep. I’m falling asleep in my chair.