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

How many hours are in your day?

November 4, 2011

People say that we all have the same number of hours in a day, but I beg to differ.

These days, I can’t seem to get through the afternoon without needing to rest for a while or nap.  Even after I wake up, I’m not very productive.  I have been on a leave of absence from work for several weeks now.  I thought that by now I’d have cleaned up my apartment and caught up on email, but somehow, that doesn’t seem to happen.

Fatigue is a difficult thing to describe if you’ve never experienced it.  Even now, I know that I’m lucky, because I know that there are many people with much more severe fatigue than what I have.  Some sleep for 12 or 15 hours a day.  How do you accomplish anything at that point?  I don’t know, but I know it must be similar to what I have now in one way: you have no choice, so you find a way.

This is frustrating.  I want so badly to use all of my waking hours productively, but that’s just not an option right now.  The thing about fatigue is that extra sleep or more rest won’t fix it.  Exercise won’t fix it either.  It’s infuriating but true.

So now another day is over and I’ve accomplished much less than I wanted to, and that will have to be ok because I have no choice.  I’m angry and frustrated, but I can’t do anything about it.  I can hope that tomorrow will be better, but I just don’t know.

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

9 Things to Appreciate About a Sick Body

November 3, 2011

Appreciation.  If I had to choose something positive about all of this health crap, it would be gaining appreciation.

This is my 100th post to this blog.  It’s amazing to me that in less than four months I have written 100 posts.  How did that happen?  This started as a place to vent about frustrations and irritations.  I still do that, but I find that I’ve been branching out.  And today I want to branch into appreciation.

We all take things for granted.  I’m not suggesting that I appreciate everything I have and everything I can do.  I wish I did, but that’s just not realistic.  Still, there are so many things that I do appreciate about my body.  I’m going to share a few (but there are many more) with you in no particular order.  I hope this helps you to think of some of your own.  Feel free to add yours in the comments to inspire others.

  1. Sleep.  I don’t get as much as I’d like, but at least I get some.  The meds only disturb my sleep a little, and I can sleep through the pain most nights.  I’m so grateful for that.
  2. The ability to walk.  Some days I can’t walk, or walking is incredibly painful.  I definitely appreciate walking when I can do it.
  3. My knees.  Saying this always makes me think of this song (at 2 min, 20 sec).  I first heard this song early in college.  I thought I appreciated my knees back then.  I was wrong.  Little did I know that before I graduated my knees would be the source of a lot of pain.  Now, I’m so thrilled when they don’t hurt.
  4. Mild nausea.  This may sound odd, but it’s true.  I have had IBS since I was a teenager, but I had symptoms for many years before it was diagnosed and for many more before I got a handle on it.  I still have symptoms, but they’re not as severe as they used to be.  Now, when I have mild nausea or other symptoms, I’m incredibly glad that it’s not as bad as it used to be.
  5. My mental abilities.  There are times when I can’t think clearly because of a lack of sleep or because of medications or for some unknown reasons.  Most of the time, I can think clearly, and I am very thankful for that.
  6. Making dinner.  There have been times the fatigue was so bad that I couldn’t bring myself to make a meal, or even to boil water for pasta.  I live alone, so this means I don’t eat.  Now I’m so appreciative when I am able to make something, especially when it’s more advance than Ramen.
  7. Going to the gym.  I was never one of those people who enjoyed exercise.  Still, I was able to exercise back before things got bad.  Then for years I couldn’t do much at all.  My physical therapist even told me not to go to the gym because I was too likely to injure myself.  After a lot of PT, I was finally given permission to go.  I can only do a few types of weights and at very low settings, and only short amounts of time on the cardio machines and at low settings, but at least I can do it!
  8. Standing on the T.  There are times that I simply can’t stand on the T (our subway.)  If I’m in too much pain or I’m not balancing well then I need to ask someone to give me their seat.  When I’m able to stand, though, I’m just very glad that I’m able to do it.
  9. Lack of pain.  I have pain in some part of my body at some point every day.  There was a time, though, that I was in pain every second of every minute of every day of every year.  It lasted 9 years.  After a while, I forgot what it felt like to not be in pain, and this upset me more than the pain itself.  My biggest wish was to have just a few minutes without pain, just so I could experience it once more.  Then I tried a disease modifying drug and it worked; the pain went away.  No, the pain didn’t go away completely, but it did disappear for short periods of time.  Now I have minutes without pain, and hours where the pain is low enough that I can ignore it.  I can’t tell you what an amazing gift this is.  I could almost cry right now thinking about it.  The unending pain may come back one day, or maybe it won’t, but at least I’ll have had a chance to appreciate how amazing it is to not feel any pain, even if it’s only for minutes at a time.
Did you notice a pattern?  Each thing I listed is something I can do/don’t have today but that I couldn’t do/did have at some point in the past.  These are actions I can take or symptoms I no longer have.  I appreciate them because I know how it feels to not have these abilities or to have the additional symptoms.  Does this mean I’m healthy and symptom-free?  No, of course not.  And yes, there are days that I wallow in the misery of it all.  But I do try and remember all the good things that I’ve got right now.  I think it’s important to appreciate as much as possible while I’ve got it.
So what do you appreciate about your body?  Write down 5 things right now, and reread them at least once a day to remember what you’ve got.  After all, it couldn’t hurt, right?  And it may just help.

4 Comments | Educating, Limitations, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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