Wednesday, September 15, 2010


This past week, I've been indefinably sick, the sort of low-grade blehs that destroy the appetite, give you weak spells in elevators and inexplicably begin needing 2 hour naps in the middle of the day. Either the weather is about to change or I'm having a rheumatoid arthritis fatigue spell.

I don't talk much about chronic disease on this blog. There are so many good RA bloggers out and about that there's not much need for my two cents. It's also a bit scary to talk about something so personal. Few people really understand what it's like to live with an invisible illness, especially one like this which comes and goes with confusing speed and no predictability. I end up sounding like a hypochondriac, or worse, a lazy, spoiled "Real Housewife" who spends her days being treated to massages and personal trainers instead of actually doing anything. After all, I don't "look sick."

The truth is, my life often looks rather spoiled: I do have a masseuse and I almost have a personal trainer. Both of which are as an essential part of RA management as daily medications, diet and a kind, knowledgeable rheumatologist.

But being spoiled, like I've been over the past year, has radically changed the pattern of my illness. The medicines I take and the disease itself do a number on my immune system, and working full-time, plus school and social life meant that most of the last four years were spent battling respiratory infections, strange viruses, and pneumonia. Lovely, right? I'd average maybe 6 months of the year in relative health, with the rest a blur of doctor's visits and bed rest. It made it hard to work, especially in the germ-infested environment of the streets and slums. It's nice not to have to face that anymore. Since radically changing my lifestyle, back in April of 2009, I've taken only one course of antibiotics(to kill a parasitic friend I inherited from a tasty green salad). My energy levels have increased dramatically; I no longer fall asleep instantaneously when I sit down on a bus, for example. I can usually make it through a whole day without falling asleep. Which might not seem like a big deal, unless you're saddled with something that's aging your body faster than it ought to. Most days, I feel like I'm wearing an 80 year old body.

So I'm really thankful that I'm able to work from home now. I can pursue my dreams and hobbies, with a plus being that both are allowing me to contribute financially to our marriage. Yay for jewelry and articles! Here, I have the freedom to care for myself, to indulge (it's still hard for me to see this as a need) in the rest I need to stay healthy. Sometimes I feel guilty; I'm certainly blessed to be able to have the luxury of working a job that is flexible enough to adapt to the needs of my body, but realize that it's really, really unusual. But on weeks like this, where fatigue is beating down on my energy like an MMA fighter, it's nice to know that I can slow down. And that's exactly what I'm going to do.

1 comment:

anne said...

thanks for sharing such a personal thing. Taking care of yourself is not indulgence. It is common sense. Glad you have a job you can do from home and all that --- if you are a princess, you are of the best sort, the working/caring kind, not the selfish ones! :)