Last week I printed out my friend Amelia’s Hipster Habit App to try it out. How much more could I possibly love this little site that is just a one page pdf that you print and fold into a tiny pocket zine, but calls itself an “app”. Yay! So silly and awesome!
I wrote “naps” into the blank and circled “chilll time” as extra reinforcement. On the second page of the zine I committed to lie down and close my eyes for 5 minutes a day at noon, every day.
After the first try at this I thought that I should go back and change it to 10 minutes. Five didn’t seem like enough. It was just enough to lie there feeling pain in my knees and hands, fingers and ankles, and for exhaustion to surge over me like a horrible heavy blanket. At the same time I had a million ideas of things I needed to remember to do, lists to make, errands to run, work emails to send, weird inventions, things I wanted to cook. So many impulses to leap up and grab my notebook to write down the lists! Instead I tried to drift into incoherence, even drifting with the pain, and think about breathing deeply and calmly.
Actually, 5 minutes of that is plenty!!!
After a week of 5 minute “naps” I find that the habit reminds me to slow down. It makes me realize that I should take some painkiller (currently tramadol, and topical voltaren), AND rest, rather than run myself into the ground over the day. 20 years of weird annoying arthritis means that my main strategy of life is to ignore pain as long as I can until I absolutely drop. Distraction is a great way to deal with pain. Fidgeting and stretching also keeps me from stiffening up so I get up a lot from working even when working from bed.
It helps me to consider my activity level that day. Am I walking too much, sitting with bad posture, do i need to adjust my activities planned, put off doing errands or laundry, get help from other people, stay home, put on ice packs, lie down more? A useful reminder to consider those things.
After a month according to the zine I could increase my habit by 10 minutes. Actually, I’m hoping one of these days I’ll really fall asleep and have a nap. That would be so good for me, but it’s so hard to do when my knees and ankles hurt so much. I look back and can’t comprehend how I coped with last year’s pain levels. I will try never to stand for (hahaah) that much uncontrolled pain again. It is criminal that I was expected to. It’s good to have better medical care. Tramadol is working out well, intermittently when I need it, as it cuts the pain level without making me feel dopey or fuzzy minded. In fact I feel pleasantly amped up even with half a tramadol. Most of the day, I can think clearly, focus my mind, and have lots of energy. Some of that might be a side effect of the drug, but I think most of it is just being more free of pain. Pain is exhausting!!
Compared to last year at this time, I am doing amazingly well. Last August I was still on medical leave only just barely starting to be able to walk without the moon boots (aka walking boots for ankle injuries) I still had 2 or 3 wedges elevating my ankles inside the boots. Without the boots I was still shuffling. Now I can take full steps with a weight shifting gait for most of the day. I can go down and up some stairs, almost full on instead of sideways, though sideways is still much easier, with a cane. I thnk it was my enthusiastic stair climbing that really got my ankles in late 2011, so more caution would be wiser.
One more anti pain tool in my belt is that I have my San Francisco medical marijuana card. It was hilariously easy to get. I am curious to go into the nicer dispensaries around town to see what they are like. So far I have only been into the Bernal Heights Collective one, which was like a sort of seedy cafe/biker bar atmosphere and awfully smokey inside. I bought some hand salve, which is helpful at night on my distal finger joints, which hurt the worst, and doesn’t seem to affect me in other ways other than the one time I got carried away, smeared it all over my wrists and knees in desperation and curiosity, and fell asleep high as a kite. In moderate amounts on one’s knuckles it doesn’t have any euphoric effect at all, and is very helpful for pain! If you have painful arthritis or know someone who does, let them know. Pot hand cream all the way!!
The other factor this year is that I have steroid injections every 3 months in my sacroiliac joints. Can’t remember when my next one is due but I am wishing for it on the right side, the last couple of weeks (my bad side, that makes me limp and drag my right leg). I also am in month 8 of Enbrel injections (an immune suppressant). I inject it every week into my stomach. It is funny but every time I think of my mom telling me when I was little that if you got bit by a rabid animal, you had to have INJECTIONS INTO YOUR STOMACH, which sounded like the worst, scariest, grossest thing ever, even to me who had allergy shots once a week in both arm that would swell up like subcutaneous tennis balls. I find that injections into the stomach at least with a bit of cushioning is easily bearable. Though I have pierced my own nose and given birth with no anesthesia so you might not want to take my word for it . . . I’m a complete badass.
Sometimes I kind of forget that other people are not in horrible pain all the time. Like they just aren’t in pain at all. They tweak a muscle or something and are like “Ow!” or they get a cold. Then I remember that, when i compare myself to other people and I worry that I might be lazier or wimpier than other people, it doesn’t actually work that way. It is something I have to constantly deal with and, not fight, but just be with. It is a constant factor. This actually means that I am good at dealing with pain, and know how; it’s a skill. It’s a bit like I am a secret magician deploying force field armor around myself or have some extra sense into the world of, you know, the internal bits of my ankle tendons or whatever. One more thing about pain while I’m on a ramble: it is very true that you (me) can be in pain all the time, yet be extremely happy, and have a good life. I would say that it takes time, endurance, and work for that to be true. It may also be luck of temperament.
OK…. maybe that is enough.. the hand cream might be kicking in.