I'm a person of varied interests. Overall, I think that's a good thing. However, I just can't keep up with everything I'd like to.
Mailing lists used to make things a bit easier. Yes, getting 100s of messages a day was overwhelming but they all came to my email client and I could read and reply to them in one place. Eventually I got to a point where I didn't feel 'at home' in any of them and didn't feel like I was doing a bit of good to anyone else so I just unsubscribed from everything.
A few years passed and I realized how lonely I was and how in need of support I was so I went back to mailing lists. Most of them were gone or overtaken by spammers. The new thing was forums. Now I'm not 100% against forums but overall they don't work for me. I'm a member of several like AbleGamers, The Dysautonomia Connection, and City of Heroes. While most forums have a 'view unread posts' button that is helpful in keeping up. However that button only works if you go to the forum's website. Yeah, I'm lazy and forgetful. Some forums allow you to send certain threads to your RSS reader or subscribe to them using email. This is great for keeping up with something you're already aware of but doesn't work for learning about new threads.
The next thing was LiveJournal. In some ways this, and the similar InsaneJournal and Dreamwidth, is my favorite. I could keep up with both individuals and communities using a centralized Friends Page. Conversation wasn't real time but it was neatly threaded. My varied interests got me in over my head again. Plus LJ tends to be one of the habitats for dramaz llamaz. The way LJ is serving ads to free account holders has killed it for me for now and I've been away long enough that paying for account doesn't make sense. I haven't put the time and energy in to Dreamwith yet to really have an incentive to spend time there.
Speaking of RSS readers such as Google Reader or NetNewsWire they're amazing for keeping up with favorite websites such as blogs. The blogging community is wonderful and so it is easy to add blog after blog to a reader. 100s of feeds in a single topic can appear in your reader before you even know it. Yes, most individuals don't post more than once a day but my feed reader still reaches the point where I need to 'mark all as read' quickly.
There are also numerous social networking sites such as Twitter and Facebook. Now FB has groups that include forums but finding new activity is tricky so I don't use that feature as much as I'd like to. People talk a great deal on social networks and it is great but even with the help of something like Socialite or TweetDeck it can be hard to keep up with all of the conversations especially if you don't own a mobile device.
None of these things truly occur in real time. (Twitter comes the closest.) There really is something attractive about real-time communication. Be it using a virtual world like a Mult-User Dungeon (MUD) like the one I met Mr. Wacky on, a MMORPG like City of Heroes, or Second Life or simple real time chat like IRC, Skype, or instant messaging via something like AIM or GTalk. Even when I can't be loud enough to be heard over the phone or the phone is too much with my social anxiety I can still interact with people. I find that real-time interactions are more distracting from pain or whatever else is bothering me. I really have to ration real-time interactions because they take more energy. I frequently feel rushed during them and have a lot of trouble following more than one conversations at a time. Plus, for some reason I'm extra worried about screwing up socially.
Not to mention the new thing: Tumblr. (My calling it 'the new thing' probably shows how out of touch I really am.) It is so very easy to follow Tumblrs. They exist on a variety of topics from cupcakes, tiny things, Chronic Illness Cat, to fat guy fashion just to name a few. One great thing about Tumblr is how low energy it is. Just go through your Dashboard and click the little hearts on things you like
I personally don't have the time nor spoons to do more than just Twitter. There I still have more than 200 people I follow because I'm interested in EDS and CFS as well as size acceptance, fiber arts, etc etc etc. I'm interested in too many things to really do any one thing justice. No matter how hard I've tried to have fewer interests I've failed. (Although my body has been trying to take fiber off the table.)
I've been told it is better to do one thing well than many things in a casual way. Overall, I believe that. I've found that varied interests help me. I can't just talk about being sick - it gets too overwhelming. I can't just talk about size positivity and fashion - it can make me sad or encourage me to spend money and it doesn't provide support about being sick. I enjoy video games but they take physical and emotional energy and again don't serve as a source of support about chronic illness or body image.
Do I have an answer? No. Do I think a solution exists? Not really. Is that okay? I'll figure it out. So am I just complaining? Yes and that's another post I need to write. ;)
Monday, March 28, 2011
Thursday, February 24, 2011
EDS and Vision Rehabilitation
I'm not an expert in blindness rehab or Ehlers-Danlos Syndrome. These are just my thoughts and experiences as someone who has been both legally blind and bendy since birth. When I did vision rehab I wasn't diagnosed with EDS so no one knew why I was having so much trouble with many of the skills I was trying to learn. Since eye problems are not unheard of in EDS and are common in Kyphoscoliosis type I thought this might be useful to someone.
First thing is that most people with EDS have bad proprioception. So, you put a person who has trouble sensing where their body is in space in sleep shades and that gets even worse. For me, that means that no matter how hard I tried I kept crossing streets slightly diagonally under shades. Walking faster is supposed to make it easier to walk in a straight line when under shades but it just didn't help me and I felt so unsteady that I couldn't manage it.
Also, unstable joints mean that muscle memory doesn't work well for travel. What I mean by this is that stride length will vary and so the number of steps it takes to get somewhere won't be consistent. This mainly applies to indoor travel. For me, I still have trouble walking through the living room in the home I've lived in for almost 8 years. I often use the pre-cane technique of wall-walking that I learned as a child. (I do need to be careful doing that outdoors because I will quickly strip the skin off my hand following a rough wall surface.)
Those unsteady joints also mean that asking for a seat on public transit can be appropriate for blind/vi people with EDS. The movements of a bus or subway can be more than a bendy body can adapt to without falling. Also using the elevator instead of the stairs or escalator may also be the right choice especially when it's crowded and/or when going down. (Going down is harder than going up according to one of my physical therapists.)
Using a cane can be a bit tricky. Encountering an obstacle can lead to a wrist subluxation or dislocation. I had to use a very light carbon fiber cane and couldn't manage to tap it, I just fatigued too quickly and couldn't always maintain the right rhythm. Sometimes a telescoping cane would collapse before my wrist but I wouldn't recommend one for extensive travel. A loose enough grip to avoid injury would sometimes mean I'd drop my cane and finding it could be hard.
Poor proprioception can also extend to the larger space around us. An unscientific poll has lead to me to conclude that even fully sighted people with EDS tend to get lost easily and have no sense of direction. Becoming blind probably won't magically fix that regardless of how hard one works in Orientation and Mobility.
Using a support cane can help with the unsteadiness if the wrist can handle it. However, I never managed the coordination required to use both simultaneously. Eventually an O&M instructor told me that while my travel skills were fine I didn't walk well enough to cross city streets and so paratransit would be appropriate for me.
I'm very grateful to her. She was one of the first O&M instructions who worked with my status quo and didn't focus on 'but there's no reason you aren't walking normally and I'm going to push you till you are.'
Eventually some people with EDS will need to learn O&M skills that are appropriate for crutch and/or wheelchair users.
The poor proprioception also means that holding things level can be almost impossible. This will mostly come up in the kitchen but also with buffet lines and eating. Some of this may come from instability in the arm joints but regardless of the cause it's there.
For ADLs, from casual observance hand tremor is not uncommon in people with EDS, myself included. This complicates reading braille and many kitchen tasks. I was never coordinated enough to manage two handed reading. Plus, repeated dislocations have lead to nerve damage in my hands.
Many people with EDS have symptoms of dysautonomia. Symptoms vary but functionally they include dizziness, fainting or near fainting, nausea, heat intolerance, and fatigue. So intensive rehabilitation programs might not be appropriate.
This is by no means an extensive list of all the ways EDS can impact the things done during rehab. Every program is a bit different. I feel like I've painted a bleak picture but I'm still glad overall that I invested time and energy in improving my skills. At first glance I'm a pretty crummy blind person, I know that. But without vision rehab I think it would be even worse.
First thing is that most people with EDS have bad proprioception. So, you put a person who has trouble sensing where their body is in space in sleep shades and that gets even worse. For me, that means that no matter how hard I tried I kept crossing streets slightly diagonally under shades. Walking faster is supposed to make it easier to walk in a straight line when under shades but it just didn't help me and I felt so unsteady that I couldn't manage it.
Also, unstable joints mean that muscle memory doesn't work well for travel. What I mean by this is that stride length will vary and so the number of steps it takes to get somewhere won't be consistent. This mainly applies to indoor travel. For me, I still have trouble walking through the living room in the home I've lived in for almost 8 years. I often use the pre-cane technique of wall-walking that I learned as a child. (I do need to be careful doing that outdoors because I will quickly strip the skin off my hand following a rough wall surface.)
Those unsteady joints also mean that asking for a seat on public transit can be appropriate for blind/vi people with EDS. The movements of a bus or subway can be more than a bendy body can adapt to without falling. Also using the elevator instead of the stairs or escalator may also be the right choice especially when it's crowded and/or when going down. (Going down is harder than going up according to one of my physical therapists.)
Using a cane can be a bit tricky. Encountering an obstacle can lead to a wrist subluxation or dislocation. I had to use a very light carbon fiber cane and couldn't manage to tap it, I just fatigued too quickly and couldn't always maintain the right rhythm. Sometimes a telescoping cane would collapse before my wrist but I wouldn't recommend one for extensive travel. A loose enough grip to avoid injury would sometimes mean I'd drop my cane and finding it could be hard.
Poor proprioception can also extend to the larger space around us. An unscientific poll has lead to me to conclude that even fully sighted people with EDS tend to get lost easily and have no sense of direction. Becoming blind probably won't magically fix that regardless of how hard one works in Orientation and Mobility.
Using a support cane can help with the unsteadiness if the wrist can handle it. However, I never managed the coordination required to use both simultaneously. Eventually an O&M instructor told me that while my travel skills were fine I didn't walk well enough to cross city streets and so paratransit would be appropriate for me.
I'm very grateful to her. She was one of the first O&M instructions who worked with my status quo and didn't focus on 'but there's no reason you aren't walking normally and I'm going to push you till you are.'
Eventually some people with EDS will need to learn O&M skills that are appropriate for crutch and/or wheelchair users.
The poor proprioception also means that holding things level can be almost impossible. This will mostly come up in the kitchen but also with buffet lines and eating. Some of this may come from instability in the arm joints but regardless of the cause it's there.
For ADLs, from casual observance hand tremor is not uncommon in people with EDS, myself included. This complicates reading braille and many kitchen tasks. I was never coordinated enough to manage two handed reading. Plus, repeated dislocations have lead to nerve damage in my hands.
Many people with EDS have symptoms of dysautonomia. Symptoms vary but functionally they include dizziness, fainting or near fainting, nausea, heat intolerance, and fatigue. So intensive rehabilitation programs might not be appropriate.
This is by no means an extensive list of all the ways EDS can impact the things done during rehab. Every program is a bit different. I feel like I've painted a bleak picture but I'm still glad overall that I invested time and energy in improving my skills. At first glance I'm a pretty crummy blind person, I know that. But without vision rehab I think it would be even worse.
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