On illness, managing your spoons, and not looking sick
Someone on my flist made a post today about managing chronic illness. It's locked or I'd link it. She made reference to the spoon story which I found kind of interesting, but share her feeling that everyone has a limit on their spoons, so it doesn't entirely hold up. She likened having a chronic illness rather to having a second (or third, or whatever) job. One that sucks and doesn't pay you.
And the tough part is, nobody sees that job. Not only do you not look sick, but the things you have to do for this "job" often don't look like "work."
For example, sleeping a lot. I generally need at least one day out of the week during which I sleep extra. Usually that is Sunday. Weeks like this, when Sunday had lots of stuff scheduled, then it falls to Monday ... when I really don't have time to be this tired. Today, for example, I have managed to do two things: feed Prothvar, and call the hospital to apologize for f-ing up my schedule, and cancel the two shifts I took on days I had prior commitments. (I'd love to blame that little SNAFU on fibro-fog. But it was just plain carelessness. I didn't write down two prior commitments in my calendar book, so I thought those days were free. They weren't. Oops.) Other than that, I've read some stuff online, trying to wake up and find some energy to do other stuff. More likely, once I finish this post, I'll crawl back into bed. I miss the days when I could have a cup of coffee to get myself going, but nowadays decaf is all my heart can handle. Hm, I could at least try that, I suppose.
Also, the assorted fitness stuff I do. Fibromyalgia is very much a "move it or lose it" proposition. The pain encourages you to lie still and do as little as possible ... which makes it worse. If I don't want to end up in a wheelchair, as many with fibro do, I have to keep moving. Yoga is a huuuuge help in keeping my muscles from locking up, as is massage. But the biggie, believe it or not, is bellydance. That, I can generally drag my ass out the door to do, no matter what. Because I love it. I love yoga, too, but not to this extent. Granted, if the fibro is bad, I won't be able to do some moves, my shimmy will look pretty pathetic, and I may not last through an entire song. But I can get up and get moving, which is important.
But it looks like a hobby. Which it is. And the performances are gravy, as are the haflas. But they are part of what keep me motivated to keep doing it. So in a sense, they are part of the job.
The problem, and really the only one I've run across much, is my sister-in-law. Well, Patsfan's brother's fiancee. Whatever. She also has fibro. And a flower shop, and three kids of her own plus three stepkids and a grandkid. And she can't for the life of her decide why I can't make it up to visit more often, since I "only work part-time" and don't have kids.
Well, even looking at work I get a paycheck for, I wouldn't say I only work part-time. Frequently I work well over 40 hours in a week. It's just from more than one job. And yes, I do have quite a bit of flexibility from most of those jobs. But if I want to actually make money, I need to save that flexibility for when I absolutely need it. Like when the fibro flares up.
I can also tweak things for family events and whatnot. However, I'm not even remotely willing to tweak things so that I can drive two hours each way to go listen to her whine about our (ok, her future) mother-in-law, the kids, and everything. I'm even less inclined to skip a bellydance class or performance to do so. Those things not only get me moving and keep me motivated, they make me happy. Something that listening to her whine does not do. And depression is another thing I have to keep an eye on. While there's a whole chicken-and-egg argument in the medical community regarding depression and fibromyalgia, the one thing that is sure is they go hand in hand. If I actually want to be healthy enough to do things, I need to do things that help me avoid depression, not that feed into it. Especially right now, while I'm tapering down one of my anti-depressant meds.
We won't even go into the part where I find myself ready to blast her at any given moment because of assorted racist and other bigotted comments.
The one person I might actually expect some understanding from, is the one who gives the least. That is because her choice of how to manage her illness is to take major painkillers so that she can continue to be a workaholic. I can understand that. In my way, I'm a workaholic, too. But I don't want to be taking Percs and Vicodin until I really have no other option. Yes, my choices on how to manage my illness consume a lot of time, and make me less available to commiserate and whatever other "bonding" stuff she thinks we ought to be doing. Oh well. So she adds "I wish I had time to do all that" to her list of whines. Honey, the youngest kid in the house is 13. You have employees you can delegate to at the shop. You could have the time, if you chose. You don't. That's fine. I don't fault you for it. In fact, I understand it, because in many ways, floral design is to you what bellydance is to me. You just also make money at it. Back off of my choices, though.
Aah, the decaf actually worked. Maybe I can get some more done, now.
And the tough part is, nobody sees that job. Not only do you not look sick, but the things you have to do for this "job" often don't look like "work."
For example, sleeping a lot. I generally need at least one day out of the week during which I sleep extra. Usually that is Sunday. Weeks like this, when Sunday had lots of stuff scheduled, then it falls to Monday ... when I really don't have time to be this tired. Today, for example, I have managed to do two things: feed Prothvar, and call the hospital to apologize for f-ing up my schedule, and cancel the two shifts I took on days I had prior commitments. (I'd love to blame that little SNAFU on fibro-fog. But it was just plain carelessness. I didn't write down two prior commitments in my calendar book, so I thought those days were free. They weren't. Oops.) Other than that, I've read some stuff online, trying to wake up and find some energy to do other stuff. More likely, once I finish this post, I'll crawl back into bed. I miss the days when I could have a cup of coffee to get myself going, but nowadays decaf is all my heart can handle. Hm, I could at least try that, I suppose.
Also, the assorted fitness stuff I do. Fibromyalgia is very much a "move it or lose it" proposition. The pain encourages you to lie still and do as little as possible ... which makes it worse. If I don't want to end up in a wheelchair, as many with fibro do, I have to keep moving. Yoga is a huuuuge help in keeping my muscles from locking up, as is massage. But the biggie, believe it or not, is bellydance. That, I can generally drag my ass out the door to do, no matter what. Because I love it. I love yoga, too, but not to this extent. Granted, if the fibro is bad, I won't be able to do some moves, my shimmy will look pretty pathetic, and I may not last through an entire song. But I can get up and get moving, which is important.
But it looks like a hobby. Which it is. And the performances are gravy, as are the haflas. But they are part of what keep me motivated to keep doing it. So in a sense, they are part of the job.
The problem, and really the only one I've run across much, is my sister-in-law. Well, Patsfan's brother's fiancee. Whatever. She also has fibro. And a flower shop, and three kids of her own plus three stepkids and a grandkid. And she can't for the life of her decide why I can't make it up to visit more often, since I "only work part-time" and don't have kids.
Well, even looking at work I get a paycheck for, I wouldn't say I only work part-time. Frequently I work well over 40 hours in a week. It's just from more than one job. And yes, I do have quite a bit of flexibility from most of those jobs. But if I want to actually make money, I need to save that flexibility for when I absolutely need it. Like when the fibro flares up.
I can also tweak things for family events and whatnot. However, I'm not even remotely willing to tweak things so that I can drive two hours each way to go listen to her whine about our (ok, her future) mother-in-law, the kids, and everything. I'm even less inclined to skip a bellydance class or performance to do so. Those things not only get me moving and keep me motivated, they make me happy. Something that listening to her whine does not do. And depression is another thing I have to keep an eye on. While there's a whole chicken-and-egg argument in the medical community regarding depression and fibromyalgia, the one thing that is sure is they go hand in hand. If I actually want to be healthy enough to do things, I need to do things that help me avoid depression, not that feed into it. Especially right now, while I'm tapering down one of my anti-depressant meds.
We won't even go into the part where I find myself ready to blast her at any given moment because of assorted racist and other bigotted comments.
The one person I might actually expect some understanding from, is the one who gives the least. That is because her choice of how to manage her illness is to take major painkillers so that she can continue to be a workaholic. I can understand that. In my way, I'm a workaholic, too. But I don't want to be taking Percs and Vicodin until I really have no other option. Yes, my choices on how to manage my illness consume a lot of time, and make me less available to commiserate and whatever other "bonding" stuff she thinks we ought to be doing. Oh well. So she adds "I wish I had time to do all that" to her list of whines. Honey, the youngest kid in the house is 13. You have employees you can delegate to at the shop. You could have the time, if you chose. You don't. That's fine. I don't fault you for it. In fact, I understand it, because in many ways, floral design is to you what bellydance is to me. You just also make money at it. Back off of my choices, though.
Aah, the decaf actually worked. Maybe I can get some more done, now.