How fibro feels.

Snow Tree

Snow Tree (Photo credit: Lapse of the Shutter)

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.

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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.

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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.

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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.

English: Galanthus nivalis, snowdrops in the s...

English: Galanthus nivalis, snowdrops in the snow (sneeuwklokje) (Photo credit: Wikipedia)

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2012 in review

English: Snowy forest track. The tree cover ha...

English: Snowy forest track. The tree cover had insulated the late snow from melting, so the snow was deeper here than outside the wood. (Photo credit: Wikipedia)

2012 has been a rough year.  I have been broken and rebuilt in ways that have stunned me, and I feel like I need to record it all here.  Maybe that will make it all seem less surreal, less like a movie of someone else’s life.

January: Lost my job.  I trained throughout November and part of December to do tech support from home, but because of various factors, it was too stressful.  So stressful, in fact, that I got very, very sick.  So sick, in fact, that I couldn’t talk on the phone, and was therefore useless for this particular job.  Also, J moved here to be with us in a romantic triad.

February: Found my current job and realized how difficult it is on my body.  It’s very low pay, very low skill, and very physical.  It’s certainly not where I thought I would work at this age, but it’s getting me by.  Also, my aunt (stepmom’s sister) passed away.  I went to the funeral and saw my stepmom for the first time in over a year.  She’s pretty much made it clear that she’s not interested in me or my life, (she thinks I need saving *eyeroll*) so it was a bit strained.

April: We began to realize that things weren’t working out with J, despite the fact that we all care a lot for each other.

May: In early May, Bear’s aunt (whom he was very close to) passed away.  We went to Md for the funeral, and that killed us a bit financially.  Also, when we returned, we realized that it was time to part ways with J.  Bear and I had been trying so hard to make things work that we had lost touch with  each other.  Ironically, we reconnected during our time in Md.  We had ‘the talk’, and J admitted to just not feeling it with us.  It was devastating at the time, but ultimately the best thing for all of us.

Later May: Bear just started feeling poorly.  REALLY poorly.  He just wasn’t himself.  He was pale, tired, splotchy, and the final straw was when he couldn’t hold a conversation without falling asleep in the middle.  He had also been having some serious sleep apnea, which he’d never really shown any signs of before.  It was terrifying.  So I dragged him to the hospital.  He was having a heart attack.  A very serious, very severe heart attack.  It just didn’t look like what you would think of as a typical heart attack because he’s so young.

It was the single most horrible thing that’s ever happened to me.  I had to face the possibility that he wouldn’t be with me, and just typing that makes me want to cry.  He had 4 blockages in the 3 main arteries into the heart.  There were 3 100% blockages and 1 95%  blockage.  The reality is that he’s extremely lucky to be alive right now, 4 stents later.

June: We began to radically change how we eat.  It was great, and I wish we had the $$ to eat as healthy as we were.  It’s our goal to get back to that.  We also learned to deal with the reality of Bear’s diabetes, high blood pressure, and all the piles of pills he would need to take from now on.  Things were still difficult with J, as I was a bit confused about what exactly had gone wrong.  I doubted myself a lot.

August: Worries about losing our house.  It’s a long story, and I think that we’ve pretty much gotten through it, but it caused SO many sleepless nights.

September: Our Dragon*Con wedding and a visit from Bear’s dad and uncle.  This was all GOOD stress, but stress nonetheless.  Continued worries about losing the house and worries about Bear losing his job.

October: My ex had a massive stroke and passed away a few days before Samhain.  It was devastating.  We grew up together.  We were together for 7 years, engaged for 5, and though I didn’t get a chance to talk to him much, I always knew that we could pick up the conversation right where we left off at any time.  He knew me from a time before I knew myself, and being with him helped shape me into who I am now.  I still can’t believe he’s gone.  😦

Second week of October, I came down with what seemed to be a small cold, and which I’m still suffering from now.  Twice now it’s moved into pneumonia territory, and I think that’s where I’m at right now.  Lots of middle-of-the-night coughing fits resulting in sleeping upright on the couch.  Lots of worrying about how to deal with it with no insurance.  😦

November: We finally met someone that we wanted to date, but she turned out to be crazy.  It was very disappointing, but obviously we just weren’t suited for each other.  Also, a catastrophic fight with my mother which confirmed that she is someone that I can’t rely on and that any little thing I say to her will be used against me in the future.  She can’t support me as an adult, and doesn’t even understand what my life is about.  She always sees the very worst in me.  I can’t talk to my sister, either, because anything I say to her will immediately get back to my mother.  Continued sickness, continued house worries, still fighting fleas.

Also, my uncle passed.  He was the last person left on that side of the family.  Now there are assorted cousins I really don’t have anything to do with, but my Dad and his family are all gone now.

December: The month of working.  And being sick.  And money worries.  And failing at Xmas.  And exhaustion.  I’m beginning to believe that Xmas is designed to make me feel completely inadequate in every way.

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There were good things that happened this year as well.

  • I appreciate my husband even more than I ever thought possible.  He’s the solid, good thing in my life, and I get to keep him.  I also got to marry him.  I’m a lucky bitch.
  • We found out who our friends are.  Some people who we thought were our best friends, couldn’t be bothered to show up for Bear when he was in the hospital.  Some friends who we thought were good friends were actually GREAT friends.  They showed up for him.  We learned the difference.  One friend even got ordained so that she could marry us.
  • We found the most amazing friend in J.  He was there for us in a way that means he’ll be in our lives and hearts forever.  He could have cut and run at any time, but he helped me through the worst time in our lives.
  • We learned a lot about health and lost about 25 lbs each.  We had to start eating cheap, and put a LITTLE of that back on, but we’re ready to get healthier and feel better in 2013.
  • Bear began his voice acting career in earnest.  He did a radio play in December, and he’s been auditioning for audio books and radio plays online.
  • Things seem good with someone that we’ve recently started seeing.  She’s sexy, sweet, honest, and seems interested in building something lasting with us.  I’m feeling VERY positive about having a lot of fun and new experiences with her.
  • I found my spirituality again.  It’s kind of one of those things that ebbs and flows, but it’s flowed back in a big way.  In addition, Bear and I have started talking seriously about starting an incense business.

Sadly, I didn’t get the writing done that I wanted to do.  I honestly just couldn’t drum up the energy for it.  I was spending so much time in survival mode, that everything else took a back seat.  I also just settled into my job.  I need to find something else, but again, survival mode.

As much as I went through in 2012, I really do have higher hopes for 2013.  I have goals, and I’ll be writing them in a separate post.

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