How to track CI symptoms

November 6, 2011

How do you tracking your health stuff?  I’ve been looking for a good method but I just don’t know where to start.  The thing about chronic illnesses is that they’re, um, chronic.  Ok, yeah, that’s obvious, but hear me out.

If I had an ear infection and the doctor wanted me to track the pain for a few days, that would be easy.  But with a chronic illness, it means tracking things for the rest of my life.  Also, with the ear infection, I’d just be paying attention to pain.  With chronic illnesses I need to track pain, fatigue, nausea, blood tests, medications, MRIs, and many other things.  It’s a lot to keep track of!

A good tracking system could be invaluable.  Have you ever gone into the doctor, told them you were feeling better, then later wondered why on earth you said that?  I have.  I may have been feeling better at the time, but that didn’t mean I was doing better over all.  Oops.  It could provide a less subjective-to-the-moment viewpoint.  Plus, how great to be able to see how symptoms varied based on changes in medications or menstrual cycles.  But wait, stress could be a factor, so I suppose I should track stress levels too.  Oh, and climate makes a huge difference, so I should include that.  And working plays a huge role, so weekdays vs. weekends vs. vacations should be included.  And of course it should be electronic.  And it must be searchable, so that I enter a search term and I can see everyplace it occurs.

And based on all of this, I am suddenly spending an hour or more every day filling out information about how I am feeling and possible contributing factors.  It’s just too much, right?  How are we supposed to do this?

Someone must have a good solution.  If you have one, could you let me know?  Thanks!

Leave a Comment » | Expectations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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!

Leave a Comment » | Expectations, Frustration, Limitations, Pain, Politics, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Projecting a “healthy” image

November 2, 2011

A few days ago I wrote this post for Chronic Babe’s carnival on Behind the Mask.  I’ve been thinking about it ever since.  Are there other masks I wear that I’m not aware of?

I went to the gym today.  This was a huge accomplishment.  I haven’t been to the gym in ages, and the last few times I went, I felt horrible afterwards.  Now I’m not working, and I’m on new meds, and I did a minimal workout, so I’m hoping to feel ok.  Still, it was weird being there with masks on my mind.

One reason I go to this particular gym is that no one seems to be judging anyone else.  We all just do our own thing.  No one needs to feel bad about choosing the small weights, or for only doing the treadmill.  Of course, that doesn’t stop me from feeling awkward anyway.  I only did 7  minutes on the bike.  Now, a few years ago I couldn’t even do that much, so this was huge for me.  But what did other people think?  The person on the next bike had clearly been there for a while, and was still there when I left.  Did she think it was strange?  What about the 3 minutes on the elliptical machine?  Again, for me this is a lot, but to others it must have looked weird.  What were they thinking?

The funny thing is, I really don’t care what people think of me.  The reason I wondered was that I was curious how I was projecting.  I’m so used to hiding my illness, and then when I can’t do something, I’m never sure if people think it’s because there’s something wrong with me or if they chalk it up to some so-called-normal trait, like laziness.  I didn’t know anyone at that gym and I’ll probably never see them again.  I don’t care if they thought I was weak or lazy or whatever.  But I do care about controlling how they see me.  I can’t control much with my illnesses.  I can’t control how I feel, or sometimes how I look, and even sometimes how I act.  If I can project the image that I want, though, that’s the ultimate control.

So I’m back to the question from my earlier post: is it worth it?

Answer: I don’t know.  I’m guessing that some days it is and some days it isn’t, but overall, I just don’t know.  Is it worth it for you?

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Isolation, Limitations, Pain, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The healthful joys of no computers

November 1, 2011

Not having internet was fabulous.

I’m sure to some people it sounds like a nightmare to be away from a computer for three and a half days.  To be honest, I wish it had been longer.  I did have email on my phone, but I wrote almost nothing and never browsed the web.  It made me realize just how much time I spend on the computer (hint: way way way too much.)

So what did I do instead?  I had great conversations with my mother.  I played with the dog (her dog; sadly I don’t have one.)  I took long walks.  Yes, we watched tv, but we also went out into nature.  We enjoyed the quiet.  We watched the ocean.  It was perfect.  The first day we took a 4 mile walk.  We took a few breaks, but we did it.  At home I never do that.  At home I feel like I can’t do it.  But with the cool clean air, the roar of the ocean, and the peacefulness, suddenly it didn’t seem too hard.

Do you have a place like this?  I wish I had one that was more local.  This place is fantastic, but I won’t be able to go back until spring.  I’m glad I made the most of it while I had the chance!  I know I wouldn’t be happy living there, but it is a fantastic place to visit.  I have been going there for a long time, and I’ve noticed that I always feel better when I’m there.  Of course, I’m on vacation when I’m there, so that helps, but even a quick weekend has the most amazing restorative effect.  I get more exercise, I eat better, and I take good care of myself.  I do more physical therapy, I read more, I’m active when I need to be and I rest when I need to.  What could be better?

Am I completely healthy when I go up here?  No, of course not.  I still have pain and fatigue and other issues, but it’s all a bit less bad.  What can I say?  I’m in love with the place.

So now it’s back to “real life” and all that goes with it.  I extended my internet vacation a bit, so I’m sorry for not posting anything yesterday.  It was so nice to be away from the computer, and I wanted it to last just a bit longer.  I’ll try to cut back from now on, though; sitting in front of a computer for hours just isn’t good for any of my conditions.  And as soon as spring hits, I’m taking another computer break and heading back to that beautiful seaside nook.  I hope you find a fantastic place to visit, too.

Leave a Comment » | Expectations, Limitations, Pain, Raves | Permalink
Posted by chronicrants

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