Closed Capitioning

There's a lot of talk about closed captioning and how it benefits people who are deaf or hard of hearing. Captioning television, movies, online videos, etc. are good for these reasons, but they benefit other people too.

I love closed captioning. I love when television has them, love that most dvds have them, and really love that Hulu.com has captions!

I often play my videos or television slightly (or very) quietly due to my constant migraine. I have a constant (varying) sound sensitivity, and even on days when this is low, I don't like the surprising pain that can come with surprising loud noises (such as explosions or yelling) that often occur unexpectedly.

But playing my videos at the volume can mean missing some parts. So what's a women to do when her tv or computer is just a little too low to hear the quieter dialogue? Use the captions of course! (If they are there...)

Here's hoping YouTube's new efforts will work out, Netflix will get their act together and add closed captioning to their online videos, and all videos and programs will have captions.

Chronic Babe Carnival

The second Chronic Babe Carnival went up last week at Annie's blog. The question was about your favorite coping mechanisms, so there's a lot of really cool ideas. So if you haven't see it yet, this is my late suggestion that you check it you :)

You can find it by clicking here.

Waiting...?

Last week was not a good pain week... my migraines exploded. I think it's the birth control but I am not sure. So I have to wait it out and see, because I don't have a lot of treatment options left. I can't just throw this idea out without being quite sure it is a reaction to the birth control.

Which basically means, I think I am waiting for my pain levels to explode again. It's less than fun.

Anyone else want to whinge, rant, etc about your life?

Gives me Hope, pt. three of many

*A health care bill passed.
*A president who seems to have decided that the health care bill was the most important thing he could do as president of the United States.
*The woman I just started seeing, who, among other things, is great about making cuddling work despite the challenges of my pain.
*My fabulous friends.
*Medications that do, at least sometimes, help.

What gives you hope?

Dream

I had a dream two nights ago that I had a terrible migraine and I was scared it would never go away. I'm used to bad migraines (when I'm awake) and the illogical (for me) fear that it will never get better. And sometimes my migraines wake me up in the middle of the night. But I have never had a migraine in my dreams before....

It's been two days, but its still creeping me out. I wish I knew why my body reacted this way. I had a migraine when I went to sleep, so I would have understood if my migraine had woken up in the middle of the night. But it seems wrong to feel pain in my sleep, or at least remember it. Knock on wood it doesn't happen again..

Studying disability: my coping skill

Over the last several years, I have picked up a lot of coping skills: amazing friends, meditation, ways of distracting myself, etc. But one of the new ways I am learning to cope with my chronic health problems is by studying the sociology of disability.

When I first started getting migraines, it never crossed my mind to think about them as a disability. But as I started looking for resources on how to cope, I started learning about disability. And the more I learned, the more I wanted to learn.

So how the hell is that a coping skill? Because it has changed how I feel about my pain and my life. There is a lot of prejudice and silence regarding disability and chronic illness. And, like most people in this society, I had internalized these things.

As I have been reading, I keep finding sentences that make me feel less alone. That described exactly what I have been going through. And I’m realizing something:

Society is full of disableism. And it affects me every day. The more I read, the more I can see it. The more I can understand the fabric of society, and the disableism and health-biases that are part of this fabric.

And as I understand that, I am gaining confidence. I am breaking the silence. I am envisioning the world and life I want to have, one with less disableism, and I am working towards it.

Now I’m not suggesting this is something that would work for everyone. I am a major sociology dork, and that is not everyone’s jam. But reading about disability and disableism has been incredibly empowering, and that makes it easier to navigate my migraine-filled life.

Some goals

1. Work on positive ways of dealing with my anger.
2. Procrastinate less and fill the time that I will gain with sleep and more important things and people.
3. Start blogging again.
4. Meditate regularly (see number 1).
5. Make fewer violent comments and jokes.
6. Keep in better contact with the friends and family I don't see on a daily basis.
7. Get back into scrapbooking.
8. Be more positive.
   

"migraines aren't disabling"

I was reading something online about migraines a couple weeks ago and I read in the comments people saying things like, "migraines aren't disabling." In the past, that would make me angry, but these anonymous people just made me laugh. I'm sorry, but have you ever had a migraine? Have you ever had one for 3.5 years? Because I have, and believe me, I've given up a lot. Every portion of my day is changed because everything I do I have to consider what the effects will be on my health and how that will affect the rest of my day, any plans I may have, and my future. For example, why do I wear my hair down? Well, it hurts too much to put it up most days. And why am I wearing so many layers? Well, my meds make me cold, my bra hurts my back in ways that make my migraines worse so I'm hiding what I'm not wearing, and, frankly, I may just be too tired and in too much pain to care what other people think.

Ok, so I guess those comments did get to me.... It's not so much I care what random people say online, but I know it's what society as a whole tends to believe. I am tired of being judged, tired of justifying myself to others, and tired of justifying myself to myself.

Yes, in fact, migraines are disabling. Partially because of people with attitudes like that.

Chronic carnival

As most of you know, I am part of the Chronic Babe forum. A bunch of us decided to start a carnival, and fabulous Kathy has kindly hosted the first one. If you haven't already checked it out, I suggest clicking on this link right here :)

Time

Sometimes when people ask me what activities I do, I jokingly include my health as an activity. I either say, "I get sick a lot" or "and I have chronic health problems" or something like that. Often it's kind of awkward and I make a mental note to never say that again (until the next time of course). But here's the thing: being ill, or disabled, or whatever label you want to afix, takes a LOT of time.

I was socialized into a culture that tells me I need to work hard and constantly get ahead. (Someone asked me what my motto was last week, and my first response was "work hard." And then I couldn't think of a better one.) This sounds good in theory, but it can lead to problems, especially when you have health problems. I'm getting better about trying not to do everything I used to. I'm "active" in student activities at my university, but not nearly as active as I used to be. Or I feel I should be.

When I read amandaw's "Second Shift for the Sick Post" (which can be found here, and which I highly suggest reading), it was like a light bulb went off. I mean, I knew dealing with my health takes a lot of time, but being able to put it in feminist and sociological theory really helped.

Sometimes, usually when my health is going through a lower point, I get to the end of the day and wonder where the time went; I'm exhausted, in pain, and nothing in my planner has been finished -- yet I feel like I've been busy trying to be "productive" all day. I used to beat myself up on those days. And I won't lie, I still do. But I've gotten better, because now I realize that what I have been doing is my "second shift for the sick."

What am I spending my time doing? There's prescriptions to be filled, doctors to be contacted, insurance hoops to be jumped through, etc. There is also the time I need to spend on self-care: stretching, heating pads, eating at the right times, etc. And finally, my brain and body is spending a lot of time simply being ill--I need to be in bed, my brain too closed-down to be "productive," everything has to be dark, etc. And this all not only takes time, it takes energy.

When I really sit down and look at it, there's a lot going on. I'm not so lazy after all.