Sunday, August 16, 2009
These Days It’s Really Just the Chronic Fatigue
Weekends are pretty important for me; they’re when I catch up on all that sleep I don’t get during the week. In every 24 hour day, mine is filled with 7 or 8 hours sleep, 2 hours to get ready for work, then an hour drive to work, then work itself (a minimum of 8 hours … I don’t take breaks or lunch so I can leave sooner), then an hour drive home from work, then another hour taking care of the menagerie … plus, at end-of-day there’s an additional half hour involved with getting ready for bed. So, let’s see, that adds up to approximately 21 hours, leaving 3 hours daily for everything else. Everything else. Which normally wouldn’t be a problem, except for that Bastard RA, who makes me tired. All. The. Time. Having 3 hours a day to do the laundry, housecleaning, food prep, shopping, bill paying, car servicing, doctor, dentist, vet, etc. may seem like plenty of time … but trust me, it’s not. In any person’s given day, there needs to be some down time. What I’m generally forced to do is to postpone some of the necessities to allow for some decompression time. I love to read, and watch certain television programs, and movies … but these days I really only read in the loo (I know, gross!), and out of 140 allowable hours on DVR, I’m sitting on 97 hours of taped programs waiting to be watched (and every weekend I delete a few of the oldest unwatched to make room for the new ones I’ve recorded), and I haven’t returned (or watched, for that matter) the three Netflix CDs I have since I received them two, no wait, three months ago (and the three before that I ended up returning without watching them). Sheesh. While I don’t tend to dwell on the negative ways that Bastard RA has impacted my life, I dwell quite a lot on the sleep I wish I was getting. I sort of remember how bad it was before I was diagnosed and the meds kicked in, but only in an oh-yeah-that-sucked kind of way … I think Mom and Dad have much clearer recall of that time, seeing as they lived the 6-month snapshot: when I came back home for Summer vacation I was fine, then when they next saw me in person 6 months later for the holidays I was absolutely crippled. I’m pretty sure they’re scarred, in the way only parents with a sick child can be, to this day. But if I sit very still and think very hard (the memories are not fun), I can certainly recall the myriad painful rheumatoid nodules all over my elbows, knuckles, and gum lines; how I could stand up straight … if given 15 minutes to un-kink my joints; how I could walk 50 feet … at the pace of an elderly person using a walker; how I drank nothing during the day so I wouldn't have to get up and walk to the Ladies Room at work and how I cried every day walking out to my truck to drive home from working that job (located in a sprawling facility with football field-sized parking lots); how swollen my joints were; how hard it was to get in and out of cars (hence the necessity of a truck for yours truly); how only certain pieces of furniture (mostly straight-backed chairs) didn't cause pain; the trigger-fingers and how I’d have to use the fingers of one hand to sloooooowly manually un-bend the fingers of the other hand; how I’d wake up stiff with various owies; how it took a couple hours to get going every. Single. Morning. Regardless of what I was doing that day. I had to psych myself up to do laundry, because the washer/dryer is in the basement, and that’s 16 steps. I didn't cook; seldom cleaned. I kept everything heavy in the garage, and if I didn’t bring up whatever I needed on my trip into the house after work, then I went without. I didn’t step foot in the dog run (fenced-in portion of my backyard) for almost three years, because it was downstairs. Never took the dogs for walks. And the pain of everything; the swollen elbows, wrists, knuckles, knees, ankles, and feet … ouch! I had no grip, so had to come up with different ways to do everything “normal” people do with their hands. It suh-hucked! Sound not so bad? Try going one full day without using your hands, for anything, then get back to me. Nowadays about the only real problem I have is with the chronic fatigue, and that’s a regular thing. By weeks end I am so overtired that I need sleep, and a lot of it. I get incredibly punchy when tired – almost like a whole other person. From a blog perspective, sometimes I read what I’ve written when tired and am embarrassed. In real life I can generally tell I’m overtired when I simply cannot shut up. They laugh at work (they don’t know about that Bastard RA, and just think I get goofy for the weekend). Mom has to tell me to pipe down and let her talk sometimes. My friends just giggle at me, “Lisa’s on a rant again.” I guess I should be happy it isn’t too bad, but from my perspective it sucks. It’s like the real me is hidden behind the tired me, and the tired me is dressed in one of those inflatable samurai suits, repeatedly knocking the real me on my ass as I try to sneak past. Sigh. Stupid inflatable-samurai-suited tired me and it’s almost impassible inflatable-samurai-suited self. Tired me pretty much forces real me to recharge on weekends, specifically Saturdays; I tend to miss out on a lot of our get-togethers because of it. Most people, when they plan to do friend & family things, plan them for Saturdays … but I have to beg off, because no matter how much I may want to join in, I know I won’t. So, after a couple years of not showing up, I’ve learned not to R.S.V.P. “yes”, but rather “maybe, but most likely not” or flat-out “no”. I rarely get out of bed on Saturdays, seldom shower, and actually get dressed less often (having Lonnie over a few weeks back just about KO'd me). In the last five years I’ve probably only been out of the house on a Saturday a couple dozen times … and many of those were just to walk to the end of the driveway to get the mail (and maybe to fill the birdfeeders). I’m certain there are quite a few of my neighbors who considered me antisocial until they got to know me because prior to this Spring I was, literally, rarely seen outside my home if I wasn’t in the truck, coming or going. My Bastard RA doc is wonderful, and my regimen is working (I’m not quite in remission yet, but seem to be getting closer all the time): I take four prescription meds (methotrexate, folic acid, vitamin d, and Humira ... that's the needle) and five non-scrips (multi-vitamin, calcium, ginger, turmeric, and selenium), and together they’ve enabled me to look, act, and for the most part be “normal” … it’s just that my “new normal” also includes mandatory sleep-in Saturdays. On the one hand, kinda cool ... who doesn't want an ironclad bonafide excuse to sleep late?