Small Comforts

2 August 2007 at 2:37 (Arthritis, Attribution Errors, Coping strategies, Hypermobility, Migraine, Pain, Proprioception, Stress, Tinnitus)

“You know when you have a few good days and you begin to wonder whether the bad days could have possibly been as bad you imagined they were and then you have a few bad days and wonder how on Earth you ever were able to do the things you did on the good days? No? Well, I do.” ~ The Goldfish

It’s a pain. No, it’s many pains.

I’m getting over a migraine, which makes me just generally tired and gives me brief flashes of visual auras, pain twinges, inconsistent light sensitivity, and word retrieval problems when speaking. This rather much overshadows the arthritis business. I’m also trying to get a bunch of errands done and phone calls made prior to packing for a trip, which unto themselves are stressful activities. I also forgot to take my ADHD med this morning, so I’ve been in a what-was-I-going-to-do? fog all day long as well, above and beyond everything else. “Ain’t we got fun.”

But after I tracked down two cats and took them to the vet (putting the suddenly-hexadecimal cat into the carrier is always entertaining — picture here ), I went for my semi-annual tooth cleaning. I have no idea if I’ve had this particular dental hygienist before, having no memory at all for faces not seen daily, but she was nice enough to shut the window blinds for me on account of my migraine “hangover”. I was also due for some dental x-rays (roentgenograms), so the she draped me with the lead apron. Although having the bite-wings stuck inside my mouth is less than fun, I always enjoy the comforting pressure of the lead apron.

In fact, years ago when I realised that a lead apron was such a fabulous deep pressure aide, I got one from a retired dentist. When I stagger to bed with an incipient migraine, I compose myself in the dark room and drape it across my thorax. I’ve also used it on nights when I just can’t seem to settle down because I feel twitchy on the outside. The lead drape is one of several small comforts that I have found useful. Everyone deals with stress in their life, both the eustresses (the good sorts that help “push” us in beneficial ways) and the distresses (the bad sort, which need no further introduction). But we all differ in the things we are stressed by, and how those stresses affect us. My distress-reduction is accomplished by several means.

• Firstly, I try to outright reduce stresses; there are some things I outright avoid if I have the choice.
• Secondly, I control stressors by choosing which I will have to deal with and when.
• Thirdly, I increase my tolerance for some stressors by limiting exposures to them and by reducing the numbers of others I’m dealing with at the moment.
• Lastly, I plan in some “down time” between stresses, so I can recharge. Down time isn’t a luxury, it’s a necessity. The more stress I am under, the more down time I need.

If we’re lucky, we get to make these choices. Unfortunately, not everything is choose-able, and when choosing some good things we have to take the bad things that accompany them.

When I am considering the kinds of stressors that will affect my body at the physical level, there are several factors that I have to evaluate, especially with regards to arthritis:

1. How repetitious is this particular gesture?
2. Does doing this put me in an awkward posture? (remembering of course that “awkward” for me may or may not be awkward for someone else, due to my hypermobility)
3. Does doing this put undo stress on my joints, muscles, nerve points and such? (remembering of course that “undo stress” will aggravate osteoarthritis pain)
4. Does this put me into a lot of bright sunlight that can easily burn me or make me too hot?
5. Does using this tool produce a lot of vibration or a lot of high-pitch noise?
6. Does doing this involve more than one stressor, because they are multiplicative, rather than additive.

These things allow me to change the way I interact with my environment in several ways: I can change my posture, I can change the method I use for performing the operation, and I can change the tools I use to perform the operation.

Frequently doing physical labour is about balancing the need for weight-bearing exercise that helps maintain bone density to help prevent osteoporosis, against the need to reduce mechanical stress on joints that worsens my osteoarthritis. So I have a series of techniques I use. I switch off sides frequently, using both right and left hands/arms for tasks. For longer projects, I stretch out first. I take frequent breaks — one of the benefits to ADHD is that I can’t stay seated for long, so I am less apt to stress myself from immobility. I keep changing my posture, and the part of the activity I am working on to reduce the amount of repetitive stress. For example, using the (battery-run, electric) string trimmer around the yard causes a lot of vibration stress. So I will reduce the amount of damage per time period and do the front yard one day, and the back yard the second day. This is not even an activity that takes very long! But even so, my fingers feel numb and tingly, and my hands shake more than they usually do.

Sometimes the “smallest” changes make big differences. The other week my daughter asked if we had a spare can-opener she could take back with her to her apartment. I was only too glad to give her our old can opener, because it has a small handle, and she has dainty, small hands. In contrast, both my son and I have large hands (mine are so large I must buy men’s gloves), so I had recently purchased a new can opener with much larger grips and turn knob. All of us were much happier because we now have tools that are better adapted to the people using them.

Pain is supposed to be a warning sign.

But pain is no longer an intermittent warning sign; it’s an unwelcome and constant companion, not unlike my tinnitus. My tinnitus is a noise that seems to live just outside my left ear, something that varies from a 14-17 kHz whine to a loud fuzzy static. Although I can re-frame my relationship with my tinnitus (as I’ve had to, lest the constant noise drive me nutz), this does not diminish the fact that it interferes with my ability to understand what people are saying.

Likewise, pain is an unwelcome and constant companion, whether it’s my osteoarthritis or a migraine episode that varies in both intensity and “flavour” but still remains parked like lead poured onto my brain for three days running. It’s not a question of “if” I am in pain, but rather, “how much” pain. Granted, there are occasional times when the pain goes away, but if I forget what I am about, then I do something rash and over-extend myself, and the pain returns at worse-than-maintenance level. I don’t “get rid of” pain or “get over” pain, I manage pain. That’s why I take pain meds twice a day. That’s why I wear a biteguard at night to relieve TMJ stress. That’s why I cannot do as much heavy physical work per day as I used to. I have to manage the pain-inducing stresses.

Because pain has changed from that intermittent warning sign to something more like a way of life, I find that sometimes I have trouble identifying pain. It’s turned into background noise that isn’t noticed. I have become habituated to certain pains, and tune them out. Don’t get me wrong — the pain still hurts. I am at some level still aware that it is there, but am also unaware of just how much it is affecting me.

I contemplated this issue during a more lucid period of the migraine. Very, very slowly, the thoughts oozed out, like beads of dew forming on a spiderweb line.

• Something hurts.
• Something else hurts, specifically.
• My arm hurts. Yes, that’s my arm hurting.
• Wow, that’s obnoxious. Yes, that is definitely my arm.
• I wish it would stop hurting.
• Can I do something about that?
• I bet moving my arm would make it stop hurting.
• (… several minutes pass …)
• My arm hurts. (realising that all over again.)
• I’m going to move my arm.
• (… several minutes pass …)
• Oh, yeah, I was going to move my arm.
• How do I move my arm?
• Where’s my arm? (my body has become an uncharted terra incognita of pain)
• Oh, yeah. (moves arm)
• Wow, that feels so much better. (just my arm — not my head)

For a normal person, they would have noticed an “ow!” and then moved their arm. Doing that would not have required all that conscious analysis.

I move my arm over and drape it across a spare pillow, the cotton case feeling lusciously smooth and cool. My bed has a surfeit of pillows, for not only do I like to read in bed, but I am a scrawny, achy person. Years ago when I was pregnant for the first time, I read in a book that it would make my hips more comfortable if I put a spare pillow between my knees and ankles. OMG, instant bliss! So for over twenty years I’ve had a “knee pillow” providing relief from stressed joints. A few years ago I also discovered that it helps to have another pillow for my head. Not under my head, but just behind the one my head lays upon. This second head pillow gets wedged between the headboard and my hair, providing what is probably best described as “superior cranial pressure”.

I find deep pressure to be good not only for helping me get to sleep, and dealing with migraines, but also it aids my proprioception, or knowing where my body is in space. Therefore I try to wear some snug clothing during the day. Rocking is also soothing with its repetitive vestibular input. My desk chair is a rocker, which not only lets me rock or sit cross-legged (it’s a BIG rocker), but also automatically adjusts to where-ever my center of gravity is. This way the chair works with me, rather than against me.

The hard part is trying to describe pain to my doctors. If I, as a patient, minimise the problem, then they don’t believe me or understand the severity of the issues. But if I, as a patient, complain overmuch, then I run the risk of being discounted as a hysterical female or of being attention-seeking. (Well yes, I am seeking attention, but not in the pathological sense.) Additionally, I have the problem of trying to describe pain. Recently medics have taken the route of asking patients to rate their pain “on a scale of 1 to 10 with 10 being the greatest”. I have this neatly charted out: 7 is a sprained ankle or bladder infection (I can still work); 8 is a bad ear infection or 2nd-degree burn (I work at reduced capacity); 9 is kidney stones (I can do very little); and 10 is back-labour (obstetrical sort, which is immobilizing). Migraines rank anywhere from 7 to 10. The scale makes sense to me, but I have found that pain tolerance is a highly personal thing — my “7” seems to be someone else’s “9”.

Furthermore, there are perhaps more names for the different hues, tints and shades of green than there are for the different kinds of pain, and the associated sensory and mechanical side-effects of pain. Unfortunately, we don’t have a Pantone chart to objectively describe such experiences in ways that our physicians and others can understand. The limited vocabulary of pain only comes in primary colours, and I’m trying to explain that today it’s not just white and red, but also ochre and periwinkle. “Yellow” is too bright and clean to describe the muddy brownish qualities of chalky ochre, and “cyan” is too bright and too printing-press basic to describe the dull neither-sky-blue-nor-lavender qualities of evasive periwinkle. Let’s not even bring up white, and the fallacy of “white is white is white”. Until you go shopping for paint, you don’t realise that there’s a dizzying array of flat, semi-gloss, high-gloss, eggshell, faintly yellow-cream, faintly grey-white, faintly blue-white, chalky white, beige-white, warm white, cool white …

Worse than trying to discuss pain with medical personnel is trying to discuss pain with anyone else. Isolated, incidental pain seems to be okay; you get a broken leg, and everyone is full of sympathy. But no one wants to deal with chronic pain. You can’t fix it, and society abhors something that isn’t fixable. (Please don’t declare A War On Pain — that just sounds so wrong.) Mention you have something wrong, and everyone wants to give you their hollow empathy (“Oh, I had a really bad headache once.”) Or they want to tell you the cure that you, in your foolishness, somehow missed (“It’s red wine that causes migraines, the sulfites or something. You just need to avoid red wine.”) I can’t remember the last time I had a glass of red wine. I save a glass of wine or beer for nights when I don’t feel achy, so I don’t stress out my liver detoxifying both alcohol and pain-reliever.

It’s as though the normals are saying, “Would you please not mention or be obvious about your pain and/or disability, so I can ignore that it exists, and therefore not have to make any accommodations? It’s much easier if we can pretend that we’re all the same. That way I don’t have to deal with my discomfort and unsureness of being around people with pain or with disablities.”

I seek my Small Comforts to deal with my pain, but others look for small comforts as excuses so they can ignore others’ pain.

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