Sunday, January 5, 2014

Remember that time you had the flu?

Do you remember how your entire body ached, and no matter how much time you spent in bed, you never felt rested?  Do you remember how many times you said, "I wish this would hurry up and pass?  I wish this would just be over?"  Do you wonder where I'm going with all this ;) ?  I'm going to tell you about my flu that never ends.  My chronic pain that has been diagnosed as Fibromyalgia, although fibro isn't supposed to be progressive, and I just keep getting worse.  I'm going to tell you about it, because I need to.  I need to get this story out of me, and I need to try to make people understand what it's like to live with chronic pain.  It's barely living at all.  This blog probably isn't going to feel like or sound like me, because it's the 'me' that I don't like to show you.  I need to get over that too...

I really didn't make a New Year's resolution so to speak.  I have lots that I hope to accomplish this year, and so many things that I want to change, but resolutions always seem to be broken, and this feels way too important to break.  All I really want to do is accept myself, my body.  That doesn't mean accepting the fact that I seem to gain weight daily now and that I can barely walk to the mailbox without my legs feeling like jello, but accepting that the person I am now isn't physically the person I used to be, and learning to love and take care of that person anyway.  I want to eat more healthy.  I want to exercise more.  I want to move away from my endless supply of motrin and aleve that I take like candy and try to find more holistic approaches to my health.  I want to stop being so angry with my body, and start trying to care for it.  I want to remember that I'm only 38, and I have (Lord willing,) so many, many years left.  I want to stop being sad when I think about the future, because my body already feels like it's 80.  I can't imagine physically being that age and still feeling like this.

I've always had issues with chronic pain.  I started having migraines when I was in middle school, and then degenerative joint disease (DJD) in my 20s, followed by endometriosis and adenomyosis in my 30s.  At one point I think I went years without a day that my head didn't hurt...  But I dealt with it.  I'm a fixer.  If something is wrong with me, I fix it.  Migraine meds for my head, surgery for my DJD, (both knees, the left side of my jaw and my right foot, so far), and a total hysterectomy for the others.  All of those things made a difference.  My knees don't hurt now.  My jaw doesn't lock up and hurt.  I don't have abdominal pain for three weeks out of the month.  But now my entire body hurts, daily.  And I can't fix it...  I don't sleep well at night...  One of the most painful things I do is hang up laundry. Who knew that the act of putting clothes on hangers would  be so, very painful?  Really though, everything hurts.  I'm actually crying as I type this, because I'm working on laundry today...  I'm not crying because it hurts, I'm crying because I'm so frustrated.  How am I supposed to work out, when I can't hang up a freaking load of laundry without having to rest??  Don't feel sorry for me though, that's not what I want.  What I want is to get this out.  What I want is to learn how to live like this.  What I want is to stop feeling oddly embarrassed because I have a chronic pain disorder.  What I want is to start being honest.  What I want is for you to not look at me and others with chronic pain the same way that I used to look at people who had it before.  Karma, baby.

I used to work in a doctor's office and I remember people coming in with chronic pain disorders.  I remember thinking that they just wanted painkillers...  That's half the reason that I refuse to take anything stronger than aleve.  The other half is I'm only 38...  If I start taking prescription meds now, what do I have left to fall back on?  Where do I go from here?  I need to be present for my kids.  I need to hold it all together.  So I just hurt.  On a typical day, my neck and lower back hurt.  My upper arms, lower legs and feet.  All four quadrants of my body, pretty much all the time.  You don't even know how frustrating it is.  If I sit too long, it hurts.  If I stand too long, it hurts.  Everything hurts.

I have to make a confession, and I know this will sound awful.  I feel awful saying it.  You may understand why I'm saying it or you may judge me harshly.  Either way I need to say it so you understand just how devastating this is starting to be for me.  I told Thomas the other day that sometimes I actually wished that I had cancer...  I normally don't tell Thomas how I'm feeling.  I usually sugar coat it like I try to do with everyone.  He's my partner, but he's in another country, trying to do his job.  He doesn't need to worry about me.  He doesn't need to feel like he's letting me down in some way.  It's hard enough for him to know that I'm bearing the brunt of taking care of our entire family without knowing that I'm starting to lose my faith.  On this day though, he asked the question at a time when I was too depressed to fake it.  He asked me how my pain was, and I told him.  I told him that I am depressed every day now, because I can't imagine never getting better.  I told him that if I had known I would be dealing with this now, I never would have had Jace.  Not because I don't adore him, but because I wouldn't have intentionally had another child if I had known he would be an active 5 year old with a mom who didn't feel like she would ever be able to keep up.  And I told him how hard it was to have something wrong and to look fine.  You are probably wondering if I'm crazy or if I think that this is worse than cancer, or what?  The answer is no, of course no- but if I had something wrong with me that wasn't just a chronic pain issue, I feel like more people would understand.  People would know why I was tired all the time- it would make sense.  People would expect me to hurt.  They would understand when I didn't feel like leaving my house, or even my bed.  It would make sense when my brain was so foggy that I couldn't even think...  People wouldn't question it.  It's not about one being worse than the other, it's about one being legit.  Cancer is legit.  Fibromyalgia is just weird and misunderstood.  It seems like an excuse.  It's not...  If you only knew how much I wish I was the old me, you would understand how legit chronic pain is.  Learning to love this new me feels like an uphill battle, and as we all know now, I'm lucky to make it back from the mailbox...

I really don't want to talk about this now.  Like I said before, I don't need you to feel sorry for me, I just need to get this out.  I need you to understand.  I need to move on and embrace my new normal.  I need to stop abusing myself and start trying to improve whatever parts of my life that I can. I need to stop faking it, and acting like I'm fine, because I'm not... And if you have chronic pain too, I need you to know that you aren't alone.