< link rel="DCTERMS.isreplacedby" href="http://caltechgirlsworld.mu.nu/" /> Not Exactly Rocket Science: Before I got distracted...

Thursday, February 03, 2005

Before I got distracted...

I was going to write about my day. This is my blog and my outlet to vent (see below), so I'm going to let off a little personal steam.

I have been having a bad flare up over the last 2 days, so like the good little scientist, I hit the journals. Honestly, I was just looking to see if there was something I could do other than advil. I did find a couple of interesting things:
1. RA flares are linked to cold weather, increased humidity, and changing weather.
2. Unlike OA (osteoarthritis), where the flares are more commonly associated with decreasing barometric pressure, RA flares are more strongly associated with increasing pressure.
3. Moderate stress, more than minor or major stress is linked to flares.

No wonder I feel like piss.

However, this is the part where I know I've been reading too many journals, when that little lightbulb over my head turns on:

RA pain is also strongly linked to circadian-associated hormone fluctuations.

No shit, it always hurts worse in the morning, but I thought that had to do with inactivity during sleep. So then I find out that circadian rhythm disruptions appear to be common at the onset of a bad flare. Last week I couldn't drag myself out of bed until noon and I have been sleeping like shit. What do you know? I thought I was depressed...

Having a chronic pain disease is a lot like being a Sisyphus. You keep pushing the rock up the hill, and just when you think you might be ok, the rock falls back down. Maybe it's not the greatest analogy, but there it is. They call it a disease of littles, maybe that's a better explanation. Pain increases and decreases both from activity and inactivity. You need to do a little, rest a little, repeat. That's hard to learn. When you go on vacation, you have to plan activities as if you're 5 years old: do a little, take a nap. We didn't do that on our last trip to CA and I spent an entire day on my friend's couch instead of going to the beach. As you can imagine, it's not super compatible with graduate school, but I have been lucky. I don't have to work more than 5-6 hours most days, and I can come in early or late since the experiments start on my clock. I just hope I can find a postdoctoral position that is as flexible.

It's funny too, though. After a while you can laugh at yourself and call yourself a klutz. My husband jokes about my knife throwing act, since I'm good at dropping them in kitchen. Watching your wife, as I am told, hobbling to the bathroom in her best impersonation of a little old lady every morning is a hoot. I mean, if you can't laugh about it, why bother? That's true of almost everything.

What's not funny is having to explain it to other people. They don't get that you can't pick something up or that you have to take a break. They see your messy house and don't understand that picking things up and putting things away, and especially folding and hanging laundry hurts like hell. Notice I said MESSY, not DIRTY. My house is clean but disorganized. So my clean clothes lay on the dresser, the clean dishes sit in the dishwasher, so what? I can live with that. My energy level is ZERO after a full day at work, even in a "remission", but try explaining that to your friends who want to go out and have a few drinks or see a movie. Forget going out dancing until 3 am. Tried that one once, and I was sore for 2 days. Give a little, take a little, you see?

So I sit here and vent at you. Which is not to say that I want your sympathy, far from it. I just appreciate the outlet. My poor husband usually has to deal with it when I get frustrated. I have to give him a ton of credit. He's learned almost instinctively what I can and can't do, and when I'm too stiff to get up and down the stairs by myself (when I'm off meds I have it in my ankles too). He can read my face and know what's up. And I appreciate that. Especially since this started while he was 1,200 miles away, and he had to learn to live with it long after I did. I don't tell him that enough.


At Thursday, February 03, 2005 9:20:00 PM, Blogger Ith said...

Hey, that's what we're here for :)

My mum suffers from couple of diseases that cause chronic pain, so I know where you're coming from.

At Friday, February 04, 2005 9:45:00 AM, Blogger AmandaDufau said...

I know exactly what you mean...my sister's RA started when she was 20, but at first they didn't know what it was.
There have been occasions when I've had to drive her somewhere because she just couldn't drive herself. Even something as simple as serving herself a refreshment has been impossible.
You're very lucky to have such an understanding hubby. For better or for worse could not be truer words!

At Friday, February 04, 2005 9:45:00 PM, Anonymous Anonymous said...

a family member has psoratic(?) arthritis. before he started taking Enbrol, his life was not very good.

good luck.


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