Many people ask me what living with chronic pain is like. It's a struggle to answer them. But it seems like someone finally (okay, a while ago, but I just found it) decided to come up with a way to answer that question. Thanks to the person who posted this link.
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf (warning, PDF)
The Spoon Theory is useful in describing the reason you can't go out tonight. Yes, I have time to do both the cooking and go out, but I don't have the energy, or the pain tolerance. No, I can't just put off my chores for too long, because I can't do an all out cleaning for an hour or two when it get's bad. I'm not a clean freak, this is just my way of coping.
It also helps to explain why I can have good days. And why I can plan for good days (mostly). So tonight I can go dancing, but only if I'm really good for a week in advance, and plan to do nothing else for the rest of the week.
And it makes the "I can't ever stop thinking of it" concept really clear. I'm constantly checking in with myself about how many spoons I have left, and what I need to spend them on today (not eating dinner is not a good option). It gives a glimpse into the mindset of having that loom over.
Thank you Christine, for putting into words the way I live my life.
Tuesday, October 14, 2008
Monday, October 13, 2008
Cool Wheels
A colleague just got some new wheels. I notice new wheelchairs (and random accessories) the way some people notice new fashion trends or haircuts. I also knew that she was in the market, so I was sort of keeping an eye out. Pretty sure it's this one:
The cool thing (for her) is that it's titanium. And the reason that's a good thing is "Now the airline can't break it". Last time she flew they managed to warp the frame of her chair. And while it was usable, it wasn't comfortable.
Sad that that was a consideration, but at least she got a cool chair out of it.
Thursday, October 9, 2008
Assistive Techonology -Or why I love Roomba
So there's sort of a backstory on this. My Mom was going to get a Roomba for Christmas. I found one on sale for a great price, and I thought I'd really thrill her, since she does a lot of sweeping up sand and has been talking about getting one for a long time. Then 3 weeks later I went home to visit. And discover that my Mom had borrowed a friend's Roomba, and it didn't really help her, since there was too much in the way of furniture for it to get around. Of course, now it was well after the 15 day return policy. So I was stuck with the little red frizbe. I thought about selling it on Craigslist, but I figured it might be worth it to try.
Side note: I hate vacuming. It takes most of my energy and strength, and I can only do it in 15 minute bursts. Even in my tiny apartment that means it can take a while to finish. I'd much rather have that time for other things, and that energy can go a long way.
So, I pulled it out, and let it charge for the required (or at least recommended). Then I set it in the middle of my bedroom floor (well known for it's deposits of hair) and hit the little green butten. Can I just tell you, this thing is funny to watch. It starts in a spiral, and then works it's way around the room (even cleaning under the heating registers) and finally ends with a series of foreys across the floor. After a few minutes of giggling at it I shut the door and went into the other room. Other than the ocassional bump into the connecting door, it was actually fairly quiet. I went in after an hour, and it had stopped next to the dressor, and the whole floor was clean. It even got up the hair (I have long dark hair, so it often makes the floor look much dirtier than it is). I opened the canister, and was shocked at how much the little thing sucked up (I had actually cleaned two days before). What's more, with a quick swipe of the cleaning tool all the hair untangled from the brush (which is removeable, which makes it so much easier to de-hair).
The next day I left it to tackle the living/kitchen/dining/office room. That's a lot of furniture, and I was sure it would miss large sections. Well, it didn't. I was impressed. I figured I'd have to create little walls (yes, you can get virtual walls, but I don't have any) to pen it in so it would clean, but it did a pretty good job even without that.
This isn't generally what people think when they talk about assistive technology. But it saved me a lot of time and energy, and freed me up to have a better day. It's taken strain off my body, and having the vacuming done by a little robot amuzes me no end. This counts as an assistive device.
Someone asked me how I justified the expense. And it got me thinking. It wasn't cheap, even getting a great deal. But, neither is a dishwasher (and the Roomba takes a lot less space). A lot of people have dishwashers, even though they could do the dishes my hand. There is a slight advantage of using a dish washer, namely the heat, but either way will work. Many people consider a dishwasher an essential. My Roomba (and I'm actually starting to think of names for it) costs less, and benefits me more than a dishwasher ever would. So I think I keep the little thing. One more way that technology can make my life easer.
Side note: I hate vacuming. It takes most of my energy and strength, and I can only do it in 15 minute bursts. Even in my tiny apartment that means it can take a while to finish. I'd much rather have that time for other things, and that energy can go a long way.
So, I pulled it out, and let it charge for the required (or at least recommended). Then I set it in the middle of my bedroom floor (well known for it's deposits of hair) and hit the little green butten. Can I just tell you, this thing is funny to watch. It starts in a spiral, and then works it's way around the room (even cleaning under the heating registers) and finally ends with a series of foreys across the floor. After a few minutes of giggling at it I shut the door and went into the other room. Other than the ocassional bump into the connecting door, it was actually fairly quiet. I went in after an hour, and it had stopped next to the dressor, and the whole floor was clean. It even got up the hair (I have long dark hair, so it often makes the floor look much dirtier than it is). I opened the canister, and was shocked at how much the little thing sucked up (I had actually cleaned two days before). What's more, with a quick swipe of the cleaning tool all the hair untangled from the brush (which is removeable, which makes it so much easier to de-hair).
The next day I left it to tackle the living/kitchen/dining/office room. That's a lot of furniture, and I was sure it would miss large sections. Well, it didn't. I was impressed. I figured I'd have to create little walls (yes, you can get virtual walls, but I don't have any) to pen it in so it would clean, but it did a pretty good job even without that.
This isn't generally what people think when they talk about assistive technology. But it saved me a lot of time and energy, and freed me up to have a better day. It's taken strain off my body, and having the vacuming done by a little robot amuzes me no end. This counts as an assistive device.
Someone asked me how I justified the expense. And it got me thinking. It wasn't cheap, even getting a great deal. But, neither is a dishwasher (and the Roomba takes a lot less space). A lot of people have dishwashers, even though they could do the dishes my hand. There is a slight advantage of using a dish washer, namely the heat, but either way will work. Many people consider a dishwasher an essential. My Roomba (and I'm actually starting to think of names for it) costs less, and benefits me more than a dishwasher ever would. So I think I keep the little thing. One more way that technology can make my life easer.
Tuesday, October 7, 2008
Treat me the same
Sorry about the delay in posting, life took over. If you're still reading, expect a lot of posts in a short amount of time!
I went out with a new friend the other day. And I mentioned that people treat me differently because of my disability. He was shocked (like I said, new friend). I told him it was fascinating to watch how people treated me differently when I was walking, using crutches, or using my chair. Then he offered to push me up the hill because he was worried about me, and I tried not to laugh in his face.
People treat me differently all the time. We went dancing that night (crutches mostly, you'd be surprised how well I can dance on one leg and crutches). Several people spoke to him (even though I was right there) about how cool it was that I was out there dancing. One guy decided to talk to me, and given the amount of drink he was doing I really wished he hadn't. At the end of the night, I could see understanding coming into his eyes. People treat me different. They can't understand that I'm just living my life, and while I might do it differently than they do, I'm not really doing anything special.
I went dancing. In my case, it involved crutches. So what? It doesn't make me better or worse, it just makes me different.
It was a good reminder to me, that with all the physical barriers I fight against, sometimes it's the attitudinal barriers that are hardest to overcome.
I went out with a new friend the other day. And I mentioned that people treat me differently because of my disability. He was shocked (like I said, new friend). I told him it was fascinating to watch how people treated me differently when I was walking, using crutches, or using my chair. Then he offered to push me up the hill because he was worried about me, and I tried not to laugh in his face.
People treat me differently all the time. We went dancing that night (crutches mostly, you'd be surprised how well I can dance on one leg and crutches). Several people spoke to him (even though I was right there) about how cool it was that I was out there dancing. One guy decided to talk to me, and given the amount of drink he was doing I really wished he hadn't. At the end of the night, I could see understanding coming into his eyes. People treat me different. They can't understand that I'm just living my life, and while I might do it differently than they do, I'm not really doing anything special.
I went dancing. In my case, it involved crutches. So what? It doesn't make me better or worse, it just makes me different.
It was a good reminder to me, that with all the physical barriers I fight against, sometimes it's the attitudinal barriers that are hardest to overcome.
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