I try not to bitch and whine too much about health stuff here. Honestly, nobody really wants to know that much detail about the pain that others go through, and who can blame them? Life is filled with pain and health trouble, so why dwell on it?
But here’s the thing. I tell people that I’m ‘having a flare-up’ or that it’s a ‘hurty day’, and they don’t know exactly what to say because they don’t know exactly what that entails. People who know me really well, like my family or Bear, know that I have a hugely high pain tolerance. So if the pain is enough for me to even mention, it’s pretty bad. Others don’t exactly know that about me, so I’m going to go into detail about what hurts and when. Just for future reference.
Starting at the top:
1. Neck. Fortunately, I don’t have the gnarly headaches that a lot of people get with fibro, and I’m grateful for that. However, I do get some pretty serious neck pain and stiffness. I got whiplash in a car wreck when I was in my early 20s, and I think the flare-ups just enflame that. This happens once or twice a week.
2. Shoulders. Shoulder pain isn’t terribly common, but when I get it, it feels kind of like when you sleep wrong with your arm underneath you at a weird angle, and it’s sore, crampy, and sometimes tingly. Sometimes it makes my arms weak or makes it tough to hold my hands over my head for any period of time. This can be troublesome when doing things like washing my hair in the shower. This happens like once every 2 weeks or so.
3. Collarbones. This one’s weird. It doesn’t seem like they should hurt, but boy howdy, do they! There are three types of pain here. There’s just general muscular tightness and crampiness, white-hot burning/stinging sensations, or the feeling that someone is literally trying to pull my collarbones out through my skin. Sometimes I get all 3. JOY! This happens like twice a week or more, depending on stress.
4. Chest. This is my main source of pain/discomfort. Sometimes it feels like my entire rib cage is filled with hot, sharp gravel that’s cutting me from the inside. Sometimes it feels like there’s a big rock where my heart should be, and that’s poking me from the inside. Sometimes I feel like I have a large toddler standing on my chest. Occasionally there are shooting pains in my breasts that go along with all of this. Sometimes I get short of breath when everything is really enflamed. It’s always scary, and I’ve been to the ER twice over the past year or so, thinking I was having a heart attack. I really hate this one, and there’s at least one of these things happening ALL THE TIME. It’s really not fun.
5. Ribs. I think I actually injured a rib, possibly dislocated it. For almost 2 years now, I’ve been having a stabbing, tearing pain in my right ribs, in the back. Sometimes it migrates up around my shoulder blade, sometimes it migrates to the front, but it’s usually on the right side. I used to get really sharp spasm pains that took my breath away, but it seems to have mellowed a bit. They still make me grunt and grab something nearby, but I can breathe. I just usually don’t want to. This happens on nights after I’ve worked, and is one of the major reasons I’m switching jobs. It’s especially bad when I’m sleeping, and twist ever so slightly in bed to turn over or something. So this happens like 3-4 times/week.
6. Elbows. This is a WTF kind of pain. I’ve never injured my elbows, I don’t play tennis or do any of the things that should hurt my elbows, so this is just random and annoying. They usually just feel really enflamed and sore, like they should be about the size of grapefruits. They aren’t. They also pop now, which they never used to do. Sometimes my wrists hurt a bit, but not nearly as bad as when I had tendonitis in one wrist a few years ago. This is almost constant nowadays, and I wonder if it has to do with winter. Will it get better when the weather gets warmer?
7. Lower back/upper butt. If I stay in bed for more than 7 hours, my lower back and pelvic bone are going to start complaining. It’s kind of an ache/cramp that feels like I would be fine if I could just get everything to pop. But it doesn’t pop. Also, when I’m standing at work, I can slightly stretch and pop my lower back, sometimes 3 or 4 times in a shift. This is the main reason I don’t get a lot of sleep these days (that and the fact that my cheewawas have tiny bladders), and it happens most nights/mornings of the week. Once in a while, I’ll wake up feeling OK, and it’s surprising and delightful.
8. Hips. This one is really scary for me, as I had a full hip replacement about 8 years ago. I really don’t love that it’s starting to ache/cramp again, especially since I really don’t have the money to have another surgery. I also don’t like that my GOOD hip hurts too, as the idea of having two bionic hips at my age is just depressing. This happens mostly when it’s about to get colder or rainier. It’s very much like the arthritis that caused me to need the hip replacement to start with. It’s getting more and more pervasive, however, and sometimes has to do with how much work I do at work.
9. Knees. This one isn’t terribly common, but sometimes I’ll go for a few days where my knees pop over and over. I don’t know what triggers this one.
10. Overall. You know how you feel when you haven’t worked out in several years, and then you get the idea that TODAY IS THE DAY? So you go to the gym, and you do cardio, you lift weights, you isolate muscle groups, and maybe even do something really ridiculous like lunges or crunches? Then you go home, and you feel great, right? Maybe a bit weak, a bit sore, but still really good.
Now, think about how you feel when you wake up the next morning. All that pain, regret, lactic acid and evil? I feel like that every single morning that I wake up. On some days, I can take a few Ibuprofen and get moving, and I start to feel better. Some days I just don’t.
Add to all that random pains from out of nowhere, and you’re there. For example, two nights ago my ankle started cramping for no reason whatsoever. I didn’t hurt it, wasn’t laying on it funny, there was no reason why it should have started hurting like that. But it did.
So every day for me is a mixed bag of the above-mentioned problems. It sucks. It really fucking sucks. But I try really hard to grit my teeth and go on with my day, and I try to be nice to everyone because it’s not THEIR fault that I’m hurting so bad.
Yes, I get depressed. Yes, I feel hopeless. Yes, I want to crawl under a rock and die some days. But I get through it.
So when I say that I’m ‘having a flare-up’, or ‘feeling hurty’, now you get a little sense of what that means for me. It’s pervasive. It’s changed me in ways I don’t like. It’s sucked away a large part of my joi de vivre. I feel guilty that Bear doesn’t have a more fun, carefree wife who can go do fun things with him.
I threw Bear a huge party for his 30th birthday last weekend, and it cost me 2 days of bed/couch time, one night of calling in sick, one night of working while out of it on painkillers, and then another day of lounging around after that. I just can’t expend large amounts of energy without dealing with how that will affect me anymore.
But this is the life that we’ve been given, and we do the best that we can.
I’m making some changes to help mange the fibro. I’m phasing out my retail/stand up job so that I can begin working from home again. This will allow me to do several things. 1. Sit down to work. 2. Choose my hours so that I can avoid the stress of an unknown schedule from week to week. 3. Try to establish a regular sleep schedule. (Lack of sleep really increases my symptoms) 4. Avoid the stress of having to schedule my rides to and from work. 5. I’ll have more home time to start a daily yoga practice and cook healthier meals. 6. Make more money, which will also help relieve some stress.
The main things are that I need to get sleep, avoid stress, and leave my stand-up job. This is all coming to fruition.
I”m going to stop focusing on other things that don’t feed me. For example, I’m making no time for casual sex anymore. Maybe someday we’ll find someone who’s on the same page with us as far as relationships go, but I’m not going to compromise anymore. And I’m going to devote less time and energy to ‘the search’. My main prerequisite is that whomever we get involved with is really into us, and really fits into our life, to the point that I know they would visit one of us in the hospital if we were hospitalized.
I need creative outlets. Right now, I’m still writing sporadically, and I’m working on a cross stitch. I need to find ways to express myself. This blog is also a good place for that. I’d like to start drawing again as well.
Reading is also a good escape, and is a great way to get to sleep, escape stressful monkey mind, and pick up tips on writing that works and doesn’t. To that end, my Goodreads page. Sadly, fibro helps kill your focus as well, so I read much slower and I read less complicated stories these days. Still, I crave it.
My next post will be about something happier, I promise. In 2 weeks (give or take), we’ll be spending a day at our local Korean sauna. I’d love to post pics and maybe find some recipes for the delicious Korean food there. Maybe something about mugwort, as they use a lot of mugwort to scent their saunas, etc.
Also, Imbolc is coming. If I’m honest, I’m usually a LOT more introspective and gloomy this time of year, so I’m happy that that hasn’t taken me over yet. We’ll be getting Bear his birthday tattoo in the next few weeks, and we’re talking about finally getting our wedding rings tattoed for Valentines Day as well. I’m also hoping for a day trip down to the location where I’m setting Willowisp. So there are good things happening for me this winter. I’ll be avoiding any mention of my birthday, as usual, but I have a lot of other good things to look forward to.
I also REALLY want to try to garden something this year. I want to grow some food, even if it’s just one lone tomato.
Despite all the pain, all the fear and uncertainty of my future, I have a lot of good things. I just try to hang onto those as much as possible.