Saturday, August 30, 2008
Just a quick one today
Telling someone with fibromyalgia that "everyone has aches and pains" is like telling a hemophiliac "everyone bleeds when they get a cut".
Thursday, August 28, 2008
A day in the life
Today, I had a booking for my small business. I awoke with my alarm, and took a pain pill, resetting my alarm for half an hour later, so I could get up once the pain medicine kicked in. Without it, I have a hard time getting up even to use the restroom, and I usually hold it as long as I can just to avoid the pain of getting up and going.
Half an hour after the first alarm, the second one goes off. I can get up now; it still hurts, but not as much. I pull the clothing I want out of my closet and dresser, but don't put them on right away; clothes are actually painful to me, and I'd rather get some other things done first (I bathe/shower at night, so that my hair will be dry by morning). Using hypoallergenic cosmetics, I put my face in order so I no longer look like a painting from Picasso's Blue Period. I pull on part of my clothing, and go downstairs to pack the rolling rubbermaid bin I need for my gig.
Using a written list, I make sure I haven't forgotten anything important; I've done this many times, but I still need to make sure the brain fog doesn't make me omit a key part of my repertoire. The bending and lifting I have to do for this is causing my lower back to protest, but I keep moving, grabbing a small bit of food on the way out.
I have to load the bin into my car, which I can do--I'm strong--but it hurts. My lower back feels like a knife has twisted in it, and it continues broadcasting pain signals even after I've settled into the driver's seat. Driving is a particular nuisance; the use of my body in this way often gives me leg cramps, a spasming back, neck pain, and a headache. Fortunately, my drive today is less than five minutes, and I arrive at my destination no worse for the drive, for once.
I haul the bin out of the car, along with a couple of bags that had been on the front seat. I try to pick up the bin's handle, but my purse is on that shoulder, and it slides down. Stupidly, I slide my purse back up and try to pick up the handle again, repeating this three or four times before my logic circuits burn through the brain fog and tell me to put the purse on the OTHER shoulder.
Once at my gig, I set up quickly, then use my spare time to read the novel I'd brought along. The time comes, and I perform well, as usual. This is the easy part for me; it comes naturally and easily. After I'm done, I receive applause, and many audience members come up afterwards to personally thank me, and to tell me how much they enjoyed it. I accept their compliments graciously, and then thank them for being there.
I leave some literature with the person who organizes events for that client, then pack up and haul the bin back out to my car. It feels heavier than it was before, even though it's technically lost some mass. My back can't take much more than this, and when I get home, I feel my abdominal muscles giving way this time as I lift the bin back up to the porch. I'm still not done, though; I have to get its contents put away--it's not a task that can be left until later. More bending, kneeling, lifting, and it's done. And so am I.
Half an hour after the first alarm, the second one goes off. I can get up now; it still hurts, but not as much. I pull the clothing I want out of my closet and dresser, but don't put them on right away; clothes are actually painful to me, and I'd rather get some other things done first (I bathe/shower at night, so that my hair will be dry by morning). Using hypoallergenic cosmetics, I put my face in order so I no longer look like a painting from Picasso's Blue Period. I pull on part of my clothing, and go downstairs to pack the rolling rubbermaid bin I need for my gig.
Using a written list, I make sure I haven't forgotten anything important; I've done this many times, but I still need to make sure the brain fog doesn't make me omit a key part of my repertoire. The bending and lifting I have to do for this is causing my lower back to protest, but I keep moving, grabbing a small bit of food on the way out.
I have to load the bin into my car, which I can do--I'm strong--but it hurts. My lower back feels like a knife has twisted in it, and it continues broadcasting pain signals even after I've settled into the driver's seat. Driving is a particular nuisance; the use of my body in this way often gives me leg cramps, a spasming back, neck pain, and a headache. Fortunately, my drive today is less than five minutes, and I arrive at my destination no worse for the drive, for once.
I haul the bin out of the car, along with a couple of bags that had been on the front seat. I try to pick up the bin's handle, but my purse is on that shoulder, and it slides down. Stupidly, I slide my purse back up and try to pick up the handle again, repeating this three or four times before my logic circuits burn through the brain fog and tell me to put the purse on the OTHER shoulder.
Once at my gig, I set up quickly, then use my spare time to read the novel I'd brought along. The time comes, and I perform well, as usual. This is the easy part for me; it comes naturally and easily. After I'm done, I receive applause, and many audience members come up afterwards to personally thank me, and to tell me how much they enjoyed it. I accept their compliments graciously, and then thank them for being there.
I leave some literature with the person who organizes events for that client, then pack up and haul the bin back out to my car. It feels heavier than it was before, even though it's technically lost some mass. My back can't take much more than this, and when I get home, I feel my abdominal muscles giving way this time as I lift the bin back up to the porch. I'm still not done, though; I have to get its contents put away--it's not a task that can be left until later. More bending, kneeling, lifting, and it's done. And so am I.
Wednesday, August 27, 2008
It's about being civil
Even IF it is true that fat is unhealthy... (and it isn't)
Even IF lifestyle is the sole cause of being fat... (and it isn't)
Those are STILL not acceptable reasons for the things people say about and do to fat people.
Christopher Reeves' horse riding lifestyle choices resulted in him becoming a quadriplegic, yet it would have been socially unacceptable to scream insults at him about horses or paralysis. That's because it's asinine to do so. Well, it's also asinine to be nasty to fat people, regardless of their health or lifestyle.
Even IF lifestyle is the sole cause of being fat... (and it isn't)
Those are STILL not acceptable reasons for the things people say about and do to fat people.
Christopher Reeves' horse riding lifestyle choices resulted in him becoming a quadriplegic, yet it would have been socially unacceptable to scream insults at him about horses or paralysis. That's because it's asinine to do so. Well, it's also asinine to be nasty to fat people, regardless of their health or lifestyle.
Brief book reviews
Stations of the Tide, by Michael Swanwick. I was irritated with it at first, and while it did become more coherent, I just found it to be a fairly pointless book. The plot was sketchy, the characters were cardboard, and the Christian allegory trite. The idea of a tidal world is very interesting, but it wasn't developed very much; in fact, there were a number of neat little notions here and there, but most of them were briefly touched upon and then forgotten. I didn't hate it, but it's not a book I'd recommend for most people.
Cloud Atlas, by David Mitchell. Now THIS book is one I'd recommend--and probably give as gifts to people. It consists of four stories, each nested in one another. They are tied together by a common thread, as each is a depiction of rising up against slavery, past, present, and future. The stories each have a character with a birthmark; Mitchell has said that the birthmark indicates that the possessor is the reincarnation of the same soul. There were a number of delightful concepts that led me to fill the book with page flags so I can go back through and write about them later. I have done part of it in a private entry; when I finish, I'll post it so everyone can see it. For now, I will just say that Cloud Atlas is a beautiful, incredible novel that I could NOT put down. I checked it out from the library, but I definitely want a copy of my own so I can flip through it again and again.
Hyperion, by Dan Simmons. This is an epic adventure tale, with many characters whose interwoven stories become part of a larger picture as they learn more about one another. The separate lives they had been leading were not as separate as they realized. Essentially, seven people are making a pilgrimage to a dangerous place on a planet that is under attack by barbaric enemies of mankind. There is a deadly foe, The Shrike, that has power over time, and can kill people in an eyeblink, with no one even seeing it arrive or leave. Simmons has a compelling storytelling ability, and it was tough for me to put the book down even when I needed sleep! It ends in a cliffhanger, though, so make sure you can get your hands on the sequel when you're done. I'm making myself wait, because I have a bunch of library books to work through first.
Cloud Atlas, by David Mitchell. Now THIS book is one I'd recommend--and probably give as gifts to people. It consists of four stories, each nested in one another. They are tied together by a common thread, as each is a depiction of rising up against slavery, past, present, and future. The stories each have a character with a birthmark; Mitchell has said that the birthmark indicates that the possessor is the reincarnation of the same soul. There were a number of delightful concepts that led me to fill the book with page flags so I can go back through and write about them later. I have done part of it in a private entry; when I finish, I'll post it so everyone can see it. For now, I will just say that Cloud Atlas is a beautiful, incredible novel that I could NOT put down. I checked it out from the library, but I definitely want a copy of my own so I can flip through it again and again.
Hyperion, by Dan Simmons. This is an epic adventure tale, with many characters whose interwoven stories become part of a larger picture as they learn more about one another. The separate lives they had been leading were not as separate as they realized. Essentially, seven people are making a pilgrimage to a dangerous place on a planet that is under attack by barbaric enemies of mankind. There is a deadly foe, The Shrike, that has power over time, and can kill people in an eyeblink, with no one even seeing it arrive or leave. Simmons has a compelling storytelling ability, and it was tough for me to put the book down even when I needed sleep! It ends in a cliffhanger, though, so make sure you can get your hands on the sequel when you're done. I'm making myself wait, because I have a bunch of library books to work through first.
Monday, August 25, 2008
How are you? Don't ask!
My aunt, who is only two years older than I am, has been undergoing chemotherapy and radiation treatments for an inoperable brain tumor. The treatments are not going to be life-saving; they will, however, lengthen her remaining time and stave off the loss of function for a while. Of course, the treatment has the expected side effects of feeling really sick, hair loss, etcetera.
When the family was informed of her diagnosis, I made the decision to start writing her letters--real, handwritten letters, sent through the mail, which to me are so much more personal and dear than email. I wanted to make sure I said all the things that I wanted to say, but, more importantly, I wanted to give her something to enjoy and look forward to. She knows that I know she's ill, and that she's suffering, and all that, so I ignored those topics altogether, instead focusing in my first few letters on the things I admired about her.
After I had gotten the "have to say this" stuff out of my system, I then focused my writings on good things that were happening here in my world. We both love animals, so I wrote about my foster cats, my own cats, my reptiles, and some of the volunteer work I was doing. I wrote about my garden as spring arrived. I told silly stories about my husband and roommate. I shared experiences with favorite restaurants and recipes, talked about art museum visits, and whatever else was going on that was positive. I made sure to tell her that I was perfectly okay with her not responding, that I figured she would want to spend the bulk of her energy on enjoying her family.
At some point, my mother had a chance to talk to her at a family gathering, and she told my mother that she was really enjoying my letters, especially because they focused on the positive things. So I kept writing, and at some point, I called her to answer a question she'd had about a bird. She commented on how irritating it was that people kept asking her how she was feeling. I told her I absolutely understood--that even though my condition is not as serious as hers, it still makes me feel like crap all the time, and so I never know whether to answer the question, "How are you feeling?" with honesty or not. I'd rather not talk about how I'm feeling, because it's always bad, and if you are always answering honestly in that way, people start to get annoyed with me for never feeling good.
So what should you say to a person who is ill, in lieu of "How are you feeling"? Train yourself to ask a different question. Ask if they've seen any good movies lately, read any good books, that kind of thing. Whatever common ground you've had with them before? Now's the time to draw upon it and talk about those topics. And, if the person is actually wanting to discuss their illness, let them guide you to that topic. I know that I sometimes do want to talk about mine, if only to share experiences that might be helpful to others, or when I need a little support, but a most of the time, if I have the energy for socializing, I'd just rather focus on other things, and I'm grateful to folks who allow me to do that.
When the family was informed of her diagnosis, I made the decision to start writing her letters--real, handwritten letters, sent through the mail, which to me are so much more personal and dear than email. I wanted to make sure I said all the things that I wanted to say, but, more importantly, I wanted to give her something to enjoy and look forward to. She knows that I know she's ill, and that she's suffering, and all that, so I ignored those topics altogether, instead focusing in my first few letters on the things I admired about her.
After I had gotten the "have to say this" stuff out of my system, I then focused my writings on good things that were happening here in my world. We both love animals, so I wrote about my foster cats, my own cats, my reptiles, and some of the volunteer work I was doing. I wrote about my garden as spring arrived. I told silly stories about my husband and roommate. I shared experiences with favorite restaurants and recipes, talked about art museum visits, and whatever else was going on that was positive. I made sure to tell her that I was perfectly okay with her not responding, that I figured she would want to spend the bulk of her energy on enjoying her family.
At some point, my mother had a chance to talk to her at a family gathering, and she told my mother that she was really enjoying my letters, especially because they focused on the positive things. So I kept writing, and at some point, I called her to answer a question she'd had about a bird. She commented on how irritating it was that people kept asking her how she was feeling. I told her I absolutely understood--that even though my condition is not as serious as hers, it still makes me feel like crap all the time, and so I never know whether to answer the question, "How are you feeling?" with honesty or not. I'd rather not talk about how I'm feeling, because it's always bad, and if you are always answering honestly in that way, people start to get annoyed with me for never feeling good.
So what should you say to a person who is ill, in lieu of "How are you feeling"? Train yourself to ask a different question. Ask if they've seen any good movies lately, read any good books, that kind of thing. Whatever common ground you've had with them before? Now's the time to draw upon it and talk about those topics. And, if the person is actually wanting to discuss their illness, let them guide you to that topic. I know that I sometimes do want to talk about mine, if only to share experiences that might be helpful to others, or when I need a little support, but a most of the time, if I have the energy for socializing, I'd just rather focus on other things, and I'm grateful to folks who allow me to do that.
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