There are so many variables. Is the pain subtle? Is it sudden? Continuous? One or two on the silly 1-10 “pain scale” or is it a twelve and heading into the stratosphere? Are you at home or at work? Able to stop everything and focus on dealing with it, or must you somehow keep on working? Have you slept well, or not? Do you have tools you use to help you mitigate the pain (a paraffin bath, heat or cold packs, compression gloves and splints, a TENS unit, painkilling medications)? Is the weather a factor? Does cold make you cry? How about humidity?
Another variable is how we, as individuals, perceive pain. My “bearable” pain may be your “terrible” pain, and vice versa.
It’s no wonder that doctors cringe when someone with chronic pain shows up in their exam room or ER asking (begging) for temporary relief in the form of narcotic analgesics. They’re a whole ‘nother problem that many of us would prefer not to evoke.
Before the rheuma dragon made his den in my wrists and hands, I was often able to distract myself from even severe RA pain by reading a book, watching a good movie, losing myself in my work, or writing. It’s a mind-trick, is distraction. Writing was my favorite method. Like most artists, even when pain was present in my knee or foot or shoulder, I could disassociate myself from it by “falling into the page.” In the corporeal world, time passed, but it was suspended for a while when I away, visiting the world of my imagination. I took a certain amount of pride in the ability to do this.
It’s become much more difficult for me lately, though, since the dragon now lives in my hands. Most days he merely nips at my joints. My right pointer finger might be swollen and a little sore, but the other joints are quiet. Or my wrists might ache, but if I put on my wrist splints, he can’t hurt me as much. I’m never sure from day to day which part of my hands he might choose to attack or how tenacious he’ll be, or how savage, but the meds I’m taking seem to make him fairly sleepy and slow most of the time. I’m very grateful.
Here’s the thing, though. To slip into the page, I must use my wrists, hands and fingers as the conduit between my imagination and the glowing computer screen. Keyboarding, even though it takes far less pressure on the keys than an old fashioned typewriter did (yay technology!), can still hurt a lot when the dragon is awake and snarling. I’ve not quite mastered this particular form of distraction when the pain is random in focus and intensity – and manifests itself only in the joints at the end of my arms.
I’ve considered trying voice-activated writing software for my computer, but that particular technology is still an unsteady toddler who frequently falls on its butt and throws tantrums. With all its glitches, using it to shift my consciousness “into the page” sounds maddening. In addition, I’m fairly intimidated by the idea of translating my imagination into the spoken word before it appears as letters and symbols, rather than the reverse. I can’t help but wonder about the tedium that would follow as I edit and rearrange my thoughts into something resembling coherence. And of course, that would require keyboarding by hand again, which sort of negates the whole point.
In the meantime, I’ll just keep on keeping on, even as RA forces me to write less than I’d like.
Living and working with RA continues to be a challenge. How do you “distract yourself” from pain?
Update: Thanks to everyone who told me they hoped I’d feel better soon, but actually, I’m feeling pretty good overall, just a bit frustrated when I can’t do everything I want to do, like just about everyone else who reads my blog. I wrote this post because I wondered how the rest of you handle your pain on a day-to-day basis, and I hoped that your comments would give us all some useful ideas. Thanks for reading!
For me at least, I find pain is usually accompanied by fear and sadness that this – or at least its cause – is not going to go away. If what’s hurting me are hands/wrists/other upper body joints, I actually find that going for a walk is a great distraction. It reminds me of what I can still do, and allows me to focus on other physical sensations that aren’t necessarily painful.
When I hurt all over, reading something I love, listening to wonderful music or watching something funny or engrossing on TV can help. Sometimes, though, all I want and am able to do is curl up in bed for a while.
Feel better soon.
I know just what you mean about fear and sadness accompanying pain, Helen. Going for a walk! Now why didn’t I think of that? That’s a great way to shift our mental focus on something other than pain. And music: I didn’t mention that, but music is one of the weapons in my arsenal, too. Thanks for the kind wishes; I’m feeling pretty good at the moment, but knowing that can change, I’m putting them in my “comfort bank” for use later, if that’s all right …
I love your description of voice activated software as a toddler frequently throwing tantrums – so true. I tried it when the RA got quite bad for me early on – it SO didn’t work. I sympathise so much with the extra frustration and worry of having it now mostly in your hands – the thing that really terrifies me about RA is the thought that I could effectively lose the use of my hands one day. My work and most of my hobbies are totally hand dependent – typing, embroidery, photography … EEEK!
So … what do I do for distraction? Go for my iPod. A current favorite is to go and raid ‘iTunes U’ – lots of free podcasts and lectures from universities all over the world on iTunes. OK, it’s not ALWAYS the best distraction – I downloaded a lecture on pain recently, so not the best thing to distract from pain – but usually fascinating stuff.
I really hope you’re feeling better soon!
I try not to think about what might happen in the future, Polly. Like you (and perhaps most of us) I can’t imagine life without the use of my hands. To that end I’ve asked my PT to give me flexibility and strengthening exercises I can do each day, and she’s come through. Now I just have to remember to do them …
I’m going to have to check out iTunes U. What a great way to not only get some good distraction from whatever hurts, but to enliven and stretch the mind as well. Thanks for sharing it, and thanks for your kind wishes, though I’m actually feeling pretty good today. I didn’t mean to imply that I was hurting.
I’m sorry to hear that things aren’t going so well, Wren. 😦
Books usually are an escape for me, although there have been times that my wrists couldn’t handle holding a book. Another thing that can help is soaking in the bathtub, or standing in a shower until I’ve emptied the hot water tank. Good luck!
Fortunately, I’m feeling pretty good, WS. Hands hurt a little, but they’ve be far worse, so I’m not complaining. But oh, I do love a deep, hot bath! I don’t have a bathtub anymore (My rheuma was in remission when we remodeled our small bathrooms and replaced the shallow, fairly useless tub with a nice large shower stall, so I was definitely not planning ahead), but I do have on-demand hot water, so I can stay in a hot shower until I’m prunelike and start feeling guilty about wasting water. I think that heat on painful joints really is one of the most soothing things we can do for rheuma pain. I’ve been known to fill the kitchen sink with hot water and just stand there with my hands in it until it cools down…
I have often wondered the same thing. How do I know my pain scale is the same as others? I have always felt like I have a pretty high pain threshold, however as Kelly at rawarrior.com brought to my attention last week, the experts consider people with RA to have a very low pain threshold.
To distract the pain, I often work on or ride one of my motorcycles. I also have a music room with a very comfy chair that I can kick back in and crank up some tunes.
Personally, starting the day off with a hot hot shower is the best for now. Lessens the stiffness, and if i’m lucky, some pain.
I actually don’t do much about my pain- i jsut keep myself occupied. Occupied with school, with the internet, with ballet etc. But if it’s horrid and i’m at home, i’d just curl up and sleep. I don’t like analgesics/NSAIDs, and only use them if productivity is compromised for the rest of the day, or if i know my foul mood from the pain will affect others.
Swimming is actually quite therapeutic, i find. You don’t necessarly have to swim- even waddling would help. But of course warm pools are preferable!
I’ve never gone to an ER asking for pain med’s. I know from what other bloggers have written on the subject that one is not treated very well. I have also learned from experience (sadly) NEVER ever to mention the words Fybromyalgia in an ER. I went once with heart palpitations and when asked for history mentioned the fybro diagnosis. I was hustled out of there in quick order, diagnosed with stress. It wasn’t stress, it was tachicardia which could have been live threatening. Lucky for me, I got a good Cardiologist and a few months later I had heart ablation surgery.
My late mother’s hands were so crippled from RA I don’t know how she did the things she did. She absolutely refused any pills of any sort. Me, I’m not so brave for sure. Ibuprofin is my best friend. The thought of having to give up knitting fills me with dread. Feel better soon…ciao