Monday, November 7, 2011

Forgive Me Rheumy, For I Have Sinned

Ah, there’s nothing like full disclosure on Monday morning…

Over the past couple months, I haven’t been a model patient.

I would say about four to six times in the last month, I haven’t been able to sleep.  I just roll around.  My brain won’t shut off.  And I can’t figure out what’s messing up my sleep cycle.  Then when I wake up, I notice that I forgot to take my nighttime meds.  And then my lack of sleep makes total sense, although I am sad to discover that I am obviously still in need of meds to help me sleep.

I don’t take sleeping pills.  I take a muscle relaxer and anti-anxiety meds.  It took me and my rheum awhile to figure out this combination.  When I first got sick, I realized I wasn’t sleeping well because 1) when I would lay in bed, it felt like my bones were crushing in on each other and 2) for an amount of time, when I was at my sickest, I worried that if I went to sleep, I wouldn’t wake up (maybe a very irrational, but very real fear).   

I’ve always viewed it as okay to occasionally skip or forget to take my nighttime meds.  Not on purpose, but I really thought I didn’t have to worry that the world would cave in if I missed a dose.  Now I’m realizing, however, that they serve a very real purpose in my life.  I can’t sleep for shit without them.

I’ve also been a delinquent patient in another way.  I haven’t totally followed through on the “no drinking alcohol” rule.  I’m not really sure how serious of an offense this actually is.  I’m not a big drinker, but for some reason, when you’re not supposed to, it suddenly makes doing it so much more palatable.  But I realize now that because 1) I don’t drink that often and my tolerance is low and 2) I think the meds make the effects of alcohol more potent, when I do drink, it hits me in ways that makes me never want to drink again.  Don’t worry.  I won’t make that mistake again any time soon. 

Also as of late, my fatigue has begun to increase.  I have a feeling that it getting darker earlier has something to do with it.  And therefore, I’ve increased my coffee intake from one cup a day, which I’ve been relatively staunch about in the past, to no less than two cups a day.  But the thing is, and we all know this, caffeine doesn’t do much to cure this kind of fatigue.  

So what gives?  Why have I become a dose-skipping, alcohol-drinking, coffee-addict? 

Needless to say, when you’re feeling reasonably well, it’s easy to push the envelope a bit.  But it’s stupid.  Because as soon as I get welcomed back into pain land, I realize how good I had it when I wasn’t in pain.  My workouts this past week have been horrible.  My knees burn the entire time.  And you how you can grab a cat by the nape of its neck?  It feels like someone is doing that to my shoulder.  It’s not pleasant.

All in all, though, I have an appointment with my rheum in a week and a half, and honestly, I feel like I don’t have all that much to say.  My right hip and elbow are a constant struggle, but that’s pretty much a given in this body of mine. 

And I don’t plan on telling him about my few transgressions.  I wouldn’t want him to think that I’m trying to sabotage this period of relative health.  Because I’m not.  And there are certainly signs that I’m in active disease mode.  My left neck gland is swollen.  Does it ever get un-swollen, I wonder?  Well, I know it does, because now that it’s swollen, it hurts.  And I’ve developed a gash on my lip that just won’t heal.  I don’t know how I got it; seems like my lip has a mind of its own.  It looks like my non-existent boyfriend punched me in the lip.  Yeah, it’s that good.

So let’s be realistic.  We aren’t model patients 100% of the time.  I think we tend to be better patients when we are feeling worse.         

Ultimately, it’s my responsibility to get back on track, and I’m writing this post to hold myself accountable to do just that.


  1. Your description of wanting alcohol just because you can't have it rang true with me. I wanted to drink so badly when on the methotrexate. I did occasionally and always felt guilt about it. Now that I'm off? I hardly ever touch the stuff - it seems to throw my body off and then I don't enjoy it.

    *hug* Hope you have a great week.

  2. Sounds to me like your disease isn't under top control so maybe you should be talking with your doc. And yes, I remember all to well the temptation. Kinda like the big cookie jar when I was a kid. You just had to sneak one.

  3. wow that the same sleep cocktail for me a little muscle relaxer and anxiety meds it's amazing how it helps