Sound has been my companion for many years now. It’s not just something I live with, it’s something I’m intimate with on many levels. My hearing has been tested off the charts; I hear above and below what the normal person does. So I’m sensitive to noise. Jarring sounds, high end grating – I’ll stop my ears up faster than anyone else in a room when something unpleasant intrudes on my space.
Lately nothing unpleasant has been allowed to intrude on me. I’ve been in headphones. Making music. What astounds me is some weird ability I have to dive down into my rage, my fear, my sorrow, and come up with something that sounds divine (at least to me). I pulled a song out of the air and it’s so good I haven’t been able to stop listening to it. For days. And that unsettled manic feeling I have when I’ve got a good song that’s not recorded yet is back again.
Which is bleeding wonderful, let me tell you! Far better to be edgy because I feel I’m sitting on something great rather than I just don’t know what the fuck to do with myself. Even if it’s not that great, at least it’s an expression of ME. And that’s better than some re-hash of someone else’s idea any day.
Seems I’ve managed to find my chill spot just in time; I’ve got to head out today on errands. Get my blood tests done. Put money on my chip card. Prep to head to Amsterdam on Monday for my passport. I’d rather just sit on my arse the whole time. REALLY rather. But I’ll con myself into getting out of the house one way or another today.
My back is still giving me gyp. The muscle in my side has been wanting to go wonky again, too. I can feel it tense up. The exercises the physiotherapist gave me help for a few minutes. Walking just seems to make things worse; after an hour of light walking everything is tense and painful. But they tell me to walk. Gods. Doctors have NO IDEA how much I hate hearing that when I’m in pain. Seems they ALWAYS tell me to walk. Pain in your hips? Walk. Pain in your back? Walk. Cracked skull? Walk. Heart attack? Walk. I swear it’s that bad. I’ll be dead and they’ll tell me to get up and walk it off.
Add to my discomfort a wrist that feels extremely painful today. What did I do to deserve it? I plucked my eyebrows. Yep. You heard me. Plucked my eyebrows. Apparently I jarred the damned thing by getting it into a weird position. Must have hurt a tendon or ligament. Now I have to hold it immobile, or as close to immobile as I can without a wrist brace. Wrist braces are my number one wish list item I’m gonna talk to my rheumatologist about. Haven’t had a set for a few years, and I need them. Badly. Used to live 24/7 in them. Only time they came off was in the shower, and I often regretted having to do that.
Obviously my rheumatoid arthritis is active again. So much for fucking remission. I know I should just be grateful my hands don’t look like this:
’cause that’s they way they DID look before I began my medication. It’s hard to be grateful, though, when you still hurt a lot. And I do still hurt a lot. I do my best to take it in stride. Not make it my life. That’s tough. It stops me, or at least slows me down considerably.
Pain. Pain that doesn’t stop. No position is comfortable. No pain relief is enough to lull it away. More than half the time, that’s where I’m at. I watch tv, play games, make music. Do my best to not think about it. It doesn’t make the pain go away. Here’s the real kicker: I’ve taken enough codeine opioids to develop a reaction to them. More than 72 hours on them and I get massive migraines. Which means one thing: next time I’m in need of long term pain relief we’ve got to step it up on the opioid chart. And I’m not happy about that. My docs know right now I’m just trying to get thru it. When I mentioned all of this to my rheumatologist, she nodded her head in agreement. Nodded her head. I guess I was hoping she’d say ‘oh, no, you’re doing well, we can prescribe you this or that for pain’ but she didn’t. She agreed; the next pain relief we have to look at WILL be the big guns. There’s no where to go from there. No step up. Just a shuffle through highly addictive drugs.
So I’m popping paracetamol like it’s candy. Every four hours, often watching the clock in anticipation of SOME pain relief when I take the next dose. Don’t like to think what that might be doing to my stomach long term.
My next appointment with my rheumatologist has been moved up. She must have seen me on the roster and wanted me in sooner. Joy. I’m guessing my blood work isn’t looking good. No big surprise, considering what’s been going on.
Fuck. Fuck, fuck , fuck. This means we’re gonna step up the methotrexate again. I fucking know it. They always fucking wanna step up that drug and I HATE it. It dampens the immune system, which is supposed to help RA. The side effect is I pick up every bug on the planet. Right now I’m on a lower level, so I’m not getting ill every week. BUT I have pain. That’s my trade off: pain or constant illness. Either way it hampers my life.
No wonder I unplug and go away. I don’t like facing up to this. I don’t like acknowledging it. It makes it real.
And sometimes REAL is too real.