Newbie Vent

[Sandra Ostapowich]

It is 4:16 p.m. and it's all I can do to not crawl back into bed - where, incidentally, I have already spent the entire day. The only reason I'm not there now is because I had to pick up my son from school and the administration probably wouldn't be happy if I slept through that. I forced myself to eat a Special-K breakfast bar on the way, but I really don't feel like eating either.

Everything hurts. Headache, left sinuses, TMJ both sides, left side of my neck, left shoulder, right abdomen, lower back, both hips - but especially the right, right thigh, right knee, right ankle, and the second-to-last toe on my right foot. Occasionally, just for fun, my left knee will go numb - just the skin gets kinda tingly when my jeans brush against it as I'm walking.

And of course, I don't have any sort of diagnosis or way of really treating this without knowing what it is. As far as I can tell, it's muscle pain - not joint or bone pain. I'd really like to pull my right leg out of socket like I do with a rotisserie chicken. I'm pretty sure that the muscles would fly around like little unmanned firehoses out of relief. So I can't lay on that side. My lower back hurts when I lay on my back (even with a pillow under my legs), and laying on my other side...today that was killing me because apparently the side seam of my underwear is aligned with a cluster of trigger points on that hip or something. Definitely unique sort of agony when I figured that one out.

I'm on anti-inflammatories (Clinoril), and they help a little. At least, things are worse when I'm not on them. And Trazodone to help me sleep more than 2 hours at a time. But man...I can tell my patience is shorter and my motivation is 0 right now. I've scheduled a massage and chiro appointment for tomorrow, and got back in with my rheumatologist on Monday. I hate to ask for pain meds, like I'm some sort of addict or something, but this is ridiculous. I used to keep Flexoril and Cyclobenzaprine on hand for back spasms, but I've been out of those for years and haven't found a doctor who would give me refills on them. I'd also spend 12 hours after taking them, either sleeping or practically drooling in front of the TV. Not exactly a long-term option for a single mother of an active 7 yr old, working 2 jobs (1 ft, 1 pt) Fortunately, I have a flexible schedule with both of them - but still.

My house is a mess and will be that way until I 1. get motivated to do something about it rather than lay in bed and 2. am not in pain when I bend over to pick it up, push the vacuum, dust, take out the trash, etc. Driving hurts - I can feel the muscles in my hip cramping up just from having to control the weight of my foot on the gas pedal.

I just need to know...I'm not going crazy, right?

[Rachael]

Totally not! I did the bed until super late yesterday because I don't work Wednesdays. I can't imagine having a kid on top of everything else going on. We finally broke down and bought a dishwasher because we can't keep up with the dishes and then we kind of quit eating healthy... or at all...

[Darlene Evans]

You really need to watch for deconditioning. The less you do, the less you will be able to. You still need rest periods. Try pacing.I bet you would be surprised how little you can tolerate. It might mean resting every ten minutes. But that resting alllows at least something to get done, instead of out pacing yourself and then spending a day in bed. The most trouble I have stems from a lack of pacing. Work does not allow for it- I am a nurse. It has proven to be a career that demands more of me than I have to give or what I have been able to restore. I keep having to look at ways of being creative. I also need to stop thinking in black and white.

I look for good moments. A pain of less than 5/10 is considered a good day for me.

A funny thing I have been doing lately is being honest to people when they ask how am I. I tell them I feel terrrible, but thanks for asking and move on. I feel good that I am not lying, but also to let them know I am not their responsiblity.

[Sandra Ostapowich]

This is true. I have noticed that once I do get moving around for about an hour, I feel significantly better. Most days I can push myself past that point and stay moving. It's been a really long and exhausting couple of days (15 hours at work on Tuesday and 12 on Wednesday) because I'm dealing with crises on top of regular busy-ness that only comes around once a month. I just have to figure out a way to push myself over that hump - every day ;) Finding ways to manage the pain that remains throughout the day is another trick.

[Darlene Evans]

I have that struggle on a daily basis, I work 12 hour shifts, but never more than two. I have several ritual through the day that is constant so helps with pacing. I get up have a long shower, then dry my hair( it is the shortest it has ever been), dress, do make up, fix a coffee, look at the computer then out the door. I get there early, so I have 20 minutes of doing nothing but putter around. At break I go to the coffee shop, check the gift stores. For lunch, I might lie down with a hot water bottle. At 3 get a small coffee. Supper may include lying down again, checking my blackberry or reading a book while I chat with coworkers. When I get home, I take a bath, get into pJ, climb on to my heating pad, watch tv or read.

On my days off, I do one big thing per day. That might mean laundry or shopping. I do break up house cleaning stuff into ten minute activities. I may watch tv, read, or be on the computer for an hour. I do have crafts, but like everything is done for short periods.

It takes me forever to get things done and something never get completed. I try to remember there is joy in the doing.

[Sandra Ostapowich]

The latest round of tests (Sjogren's, TSH, and who knows what) ALL came back normal again. But the cortisone shots into my hip bursae have REALLY REALLY helped. I'm finally without that pain (and the trigger points it caused) for the first time in about 5 years.