"the hardest thing in this world is to live in it"
Not so much the daily grind, as the things that fall outside the scope of academics.
Dear Kelly,
When you only have a small chocolate muffin and a small slice of coffee cake, coffee, and water, for close to nine hours, you’re going to get cranky towards the end of it. Really, really cranky. And then when you get home, and you eat like you should have done hours ago, and your blood sugar stabilizes, you will feel like an ass for being so cranky to other people.
Yours,
Your body
Sometimes, it’s the practical things the pain management doctors forget to tell you. For instance, the first thing I would tell anyone going on continual, chronic pain treating opioid therapy? Plan on spending a couple of minutes, morning and night, checking yourself over for mystery wounds. The drugs don’t take away your ability to feel pain – trust me, slam your foot into the wall, you’ll feel it. But, they do seem to deaden your awareness of some kinda of injuries – I haven’t really figured out the pattern, but it’s there.
I was reminded of this tonight when I pulled up my yoga pants to rub some lotion on my ankles and found blood. A lot of blood. Trickled, dried blood. Huh. So, I rolled up the leg a bit higher, and about mid-calf came upon an obviously wet wound, still actively bleeding to the point that I couldn’t really figure out how bad the cut was. Or, for that matter, how the hell I got it – shouldn’t I remember gouging myself deep enough to bleed, not to mention bleed that copiously? I wandered off to clean up the blood and figure out if I was going to need to continue wandering over to the ED.
Thankfully, it looks like I did something to basically puncture myself a couple of times; not terribly long (the longest is about an inch), but kind of deep. I’d suspect a cat, except I’m pretty certain I would have remembered a cat doing that to me. A bit of pressure and butterfly bandages stopped the bleeding, so I think I should be okay sans ED (and really, midnight on a Sunday is not a grand time to wander through the ED).
Still, it’s sort of disconcerting to realize that I can injure myself like that and be completely unaware of it. Prior to the chronic pain and medications, I was one of the bigger babies when it came to injuries – these days, I can walk around long enough to coagulate before I notice!
This is the sort of practical thing everyone going onto long term pain management therapy should be aware of.
It’s funny, that it’s hard for me to remember that we all colour what we hear with our own perceptions. We frame a situation based on our experience – something I have studied extensively, yet I still always seem to get caught by surprise when such basic miscommunication happens. And given that it was essentially the basis of my marriage for several years before I no longer had a marriage, you would think I’d be very accustomed.
But no, I still find myself saying things that I mean in perfectly innocent ways that are easily misconstrued by others to mean something so other than what I mean, I have to wonder what people actually think of me, that they would believe I’d say such things.
Which is sort of a roundabout way to get to the conclusion that perhaps I need to get my ears checked. People have been having a hard time understanding what I’m saying of late – as though I’m either not enunciating my words properly, or talking too softly, and I’m aware that both of these can be signs of a more serious hearing loss issue. I think I would prefer to believe that I’m losing my hearing, than have people think I’m so completely and utterly without sense.
It’s funny, how things tend to work out. For example, I signed up to write on Blogging Against Disablism Day, which is today (May 1st), prior to rescheduling my doc appointment, which was also today. And seeing my doc was largely to make sure my body is still tolerating my pain management regime, and to talk about changing things up a bit – I’ve added naproxin twice daily to my “diet”, in an effort to drop back, one hopes, on the prescriptions.
But prescriptions aren’t visible. I can, typically, hide the fact that I have a disability – I am one of the many, the invisibly disabled. For those just joining, I have chronic pain (complex regional pain syndrome, or reflex sympathetic dystrophy, depending on where you live in the world) in my right arm, from fingertips to the bottom of my shoulder, as well as in my left hand. The CRPS is augmented by often severe neuropathy. But if you look at me, I appear normal. It is a great, secret weapon of mine, something I can pull out in a class on disability, when someone – and there is always someone – says something stupid, like if you can’t survive in the jungle with tigers, then you’re disabled and maybe it wouldn’t be a bad thing to take that disability and remove it. Because when people think of disability, they think of crippling, visually horrible, painful, early death illnesses, or something they cannot imagine living with, like being deaf or blind. They never stop to think beyond stereotype.
And I never have to live with the stereotype. I can decide if I want someone to know I have a medical condition that limits my life, that I live in pain every single day, and the difference for me is how much pain, not whether I have pain. I think I have had maybe three or four pain-free days since being diagnosed in 2004. But if I want to, I can hide it as just being tired, or sore, or not sleeping well the night before.
Today, that changed a bit, and I spent the day feeling supremely self conscious. My doctor gave me a few samples of lidoderm, a topical lidocaine patch that can be cut to shape and applied to areas suffering topical, neuropathic pain. Which I deal with on a daily basis, and she suggested I give these a shake and see if they help – especially at periods like now, when I should be writing several papers and spending most of my time typing and writing, instead of laying on a heating pad. I’m always game to try new things, so we sliced the patches up, slapped one on my lower shoulder blade, and the other immediately under my right elbow.
While I had long sleeves on, it was warm today and I had the sleeves pushed up enough that the patch was visible. Running errands after the appointment, I felt like people were staring – something I chalked up to my own discomfort, until several people asked what I was wearing, if they were the heat patches or something else. Once I got to the hospital, the people around me knew what I was wearing, and several folks I knew stopped to ask why I was wearing the lidoderm patch.
By the time I got to work, I had pulled my sleeves down.
I am a bit of a control freak, and one of the things I desperately like to control is what people know about me (which might sound funny coming from someone who blogs as much, and in as many places, as I do, but believe me, I control what I blog about, too). While I still have a choice as to whether or not I want to reveal that I am not fully able-bodied, it’s a “choice” that means I can have a bit more pain relief, or not. I have to choose how I want people to see me, and while I realize that I might be considered lucky, by many, to have the choice, to be able to pass, in some ways, I wish I didn’t have the choice. I wish I didn’t have to weigh which is more important to me, visible disability or fake ableism, or that it was even a question.
