Time to mix things up

November 5, 2011

Yeah, that’s a bad pun in the title.  So sue me.  No, wait, that’s just sarcasm.  I didn’t mean it.

For many of us here in the United States (though not everyone, since it’s a screwy system) the clocks will “fall back” in a few hours as daylight savings time (DST) ends.  Now, it’s not as if those of us with health issues don’t have enough beyond our control to deal with, we have to deal with time changes too.

For some people this really won’t matter at all.  For people whose bodies are sensitive to sunlight, like mine, this is huge.  Yes, I’m the weirdo who flies from Boston to Chicago and the one hour time difference throws me off.  Yes, I travel to California and it takes me three days (at least) to adjust to the time difference.  DST is even worse.  At least when I travel, my schedule changes anyway because, well, I’m not at home.  But with DST I’m home, doing all the things I normally do, but the clocks are off.  I’m hungry at the wrong times.  I have to shift medication times.  And don’t let me get started on the sudden shift in daylight.  For someone with seasonal affective disorder this… well, it sucks.  A lot.

Why do we do this?  Well, it depends on who you ask.  If you read the link above, you’ll see some of the reasons.  Some of it is political, such as saving money by reducing energy costs through cutting down on artificial light.  My favorite (again, that’s sarcasm) is the idea that we should get up at sunrise and go to bed at sunset.  I’m sure that sounds like a great idea if you’re getting 16 hours of daylight.  For those of us who get around 9 hours of daylight in the winter, that’s just ridiculous.  And the powers that be (apparently this is Congress) can arrange DST however they want, but that doesn’t change what time you have to get up for work or get your kids up for school or head to the gym, etc.  The end of DST means that some people will wake up while it’s light out this week while others will be waking up in the dark.

Is it really worth all of this trouble?  I say no.  I’d rather keep DST time all year round, so that we get more daylight in the afternoon and less at night.  Actually, I’d rather spend have the year here in Boston and the other half someplace else, so that I always get at least 14 hours of daylight each day.  Now that sounds fantastic!

In the meantime, I better go change the clocks, adjust med times, and eat a little something extra so I’m not too hungry in the morning.  And maybe I’ll spend a few extra minutes in front of the light box in the morning.

Good luck to you!

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Posted by chronicrants

Dissing discrimination

October 25, 2011

Are you discriminated against because of your illness(es)?  Have you seen it happen to others?

I read some tweets yesterday about people who are publicly discriminated against by strangers.  People spit on them!  I was horrified!  Now I’m wondering, is this common?  Have I been blind to it?

Most days I can “pass” as someone who is healthy, or as someone who appears to have an injury.  I have never been in a wheelchair for more than a few hours at a time (in an airport, at a mall) and those times have been rare.  When I was in a wheelchair some people were kind and held doors open, others were rude and verbally bashed me for blocking their path.  Many people were ruder than I would have expected, but I can’t imagine that they would do worse  But then, despite my cynicism, I still tend to give people too much credit.  Sad, isn’t it?  Anyway, most days I have a limp, or maybe have trouble opening a door, but for better or worse, most of my problems aren’t obvious to strangers.  I can hide them if I want to or need to.

So if this really happens as much as the tweeters implied, how have I not see it?  I know that I can be blind to many things in the world.  Sometimes I’m in my own head as I walk down the street, and don’t notice a friend walking the other way.  I drive someplace, and don’t remember how I got there.  I believe the tweeters.  I have no reason not to.  My main doubt is about myself: did I happen to not see a few incidents, or is some part of my brain intentionally ignoring the problem?  Are other people seeing it?  I’m guessing they don’t, or I would have heard more about it sooner.  Either way, it doesn’t matter.  Now that I’m aware of it, I’m going to pay more attention.  I hope you will too.  Have you seen this kind of thing?  Have you done anything about it?  Has it happened to you?

I hope you say no, that this hasn’t happened to you and you haven’t seen it.  But I know the reality.  It’s happened to someone.  My hope from now on is this: that it won’t happen anymore.  Let’s tell our friends and family and political representatives.  Society as a whole needs to have more respect.  It is not ok to treat each other like this.  We need to care about and support each other.  And we need to speak up when we see otherwise.  I know I will.

Note: When I mention speaking up, of course I recommend only doing this when it is completely safe to do so.  Please do not put yourself in danger in order to make this point.

2 Comments | Educating, Expectations, Insensitive, Intrusions, Isolation, Politics, Rants, Thoughtfulness | Permalink
Posted by chronicrants

Understanding drugs

October 20, 2011

A friend was trying to comfort me.  She suggested that maybe there would be a new drug treatment soon.  I said there wouldn’t be because, well, there won’t be.

The process is slow.  If a scientist comes across some great discovery today, it will be many years before it is a drug that I could take.  And of course, even then, my doctor may not want to prescribe it or my insurance may not cover it.  But first there needs to be a drug that could help, and there just aren’t very many of those.

It was reassuring to see this article in the newspaper the other day.  Sometimes, like with penicillin, there are fortuitous accidents.  I don’t know about you, but I really don’t want to wait around and hope that someone gets lucky.  A lot of medications are used off-label, meaning they were developed to treat one thing, and ended up working well for something else (think: Viagra.)  And then there are the meds that are being used as they were designed.  I suppose I could do some research to figure out how many of these exist now, but I’m too tired or too lazy or maybe both.  The point is, there are a lot of medications that are not being used as they were designed.  That’s ok, but wouldn’t it be nice if it didn’t have to happen that way, because drug interactions were so well understood that scientists could design medications to treat any condition they chose?

That’s the dream.  Reading this article, it’s good to see that some people are pursuing this approach, and I sincerely hope they can make it work, and soon.  Now I know that doesn’t mean I’d get a drug that would help my conditions specifically.  I’m sure these methods would be used to treat more common illnesses first.  Still, after they treat cancer and AIDS and so many others, maybe, one day, they’ll get around to mine.

There are limited resources, and time continues to alternately crawl and fly by, but it’s encouraging to see progress like this.  Throwing money at research isn’t enough.  Politicians and argue forever about how to allocate funds.  At the end of the day, though, it’s about being smart.  Think about how much farther the dollars would go with greater understanding of the human body.  Think about what could be achieved!

 

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Leave a Comment » | Educating, Expectations, Frustration, Isolation, Kindness, Medication, Pain, Politics, Rants, Raves, Support, Symptoms, Unpredictable | Permalink
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Little things are really big

October 15, 2011

I came across this article in the newspaper this morning, about a local grocery store that is the second in the country to add Braille labels to its shelves.  I never noticed the lack of Braille before, but as soon as I saw the headline, I wondered why it’s taken so long to happen.

Braille labels probably seems like a small thing to many people, but for those who need it, it will make a big difference.  But then, that’s true of so many things, isn’t it?  Audible walk signals at intersections, smooth curb cuts, railings on staircases, ramps…. people who don’t need them just pass right by, but for so many others they make life not only easier, but manageable.  It makes me wonder what else we could, and should, be doing.  Did you notice that the Braille grocery store labels came about because of a first grader?  It’s that young perspective that we all need to have, to question everything, to propose solutions.  Maybe we need to get a group of children together to fix the inequities.  Either way, we definitely should not settle for the status quo.  We need to continue to change things for the better.  There’s always room for improvement, so let’s find the most inefficient areas and improve them.

I’m as guilty as anyone of sitting back and letting others do the work.  I contribute in small ways, but I haven’t stepped up in a big way, at least not lately.  I think it’s time for me.  What about you?

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Leave a Comment » | Educating, Expectations, Isolation, Limitations, Milestones, Politics, Raves, Support, Symptoms, Thoughtfulness | Permalink
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