Lost days

September 17, 2011

I usually post something each day, but yesterday wasn’t quite normal.

For a while, I would get sick with some sort of cold several times a year.  Then the chronic illnesses changed.  Now, I get sick once or twice a year, and several other times a year, when I start to get a bug, I feel a certain type of…. well, I don’t know how to describe it.  But when I feel it, if I listen to my body, and get as much sleep as possible (usually 12-15 hours), then spend the entire next day resting, I can usually avoid the bug.  And that was yesterday and today.  I left work early yesterday, and didn’t touch the computer all day.  No email, no Facebook, no Twitter (@CIRants), nothing.  I just had no desire for any sort of contact with the outside world.  Instead, I watched tv and movies.  Luckily, I had Fred and Ginger to entertain me (and if you’ve never seen them dance, you should.)

Anyway, after 12 hours of sleep, I finally go up this morning feeling much better.  Actually, I would have liked to sleep even more, but I was very hungry.  I can sleep through a lot of things, but not a rumbling stomach, especially my own.  Unfortunately, even though I did feel a lot better, I didn’t feel quite right, and I know from experience that I had to stay in and rest all day.  I cancelled plans.  I stayedindoors on a gorgeous day.  I didn’t do anything productive: no laundry, no cooking, not even catching up on emails.  As I write this, I am missing a party that I had looked forward to for months.  But what’s the alternative?  If I went out, I know I’d get sick, and that would be worse.  This way, I might be ok tomorrow.  Still, I hate to lose time like this.  So much for my Saturday.  I wouldn’t mind missing plans occasionally, but it’s been happening more and more often lately.

My big frustration is that I put so much energy into working, and then I miss out on life.  I’d much rather it be the other way around.  I’m working on that.  I’m sure there’s a way.  I just don’t know yet what it is.  In the meantime, I’m hoping to leave the house tomorrow.

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2 Comments | Decisions, Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Da da DUM!

September 15, 2011

Well it was fun while it lasted.  That’s not to say it won’t return, but…..

I’m thrilled I was able to go out last night.  I had a lot of fun, and had only minimal swelling and pain.  It worked out pretty well.  Then I got home and got stuck in the elevator (no, I’m not kidding, it just stopped and it was more than 10 minutes before anyone even knew I was in there.)  I had so much adrenaline going after that, I ended up getting very little sleep.  After going out last night, going out tonight was going to be tough, but I really wanted to do it.  It was important that I go to a particular thing happening nearby.  But after so little sleep, well, it just wasn’t happening.  So now I’m in front of my computer, practically ready to fall sleep in my chair.  It’ll be nice to get some rest tonight.  It sucks having to miss out, but I guess all of the activity had to catch up with me eventually.  And hopefully I’ll get some energy back soon so I can do fun stuff again.  Soon.  Did I already say that?

 

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Leave a Comment » | Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
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Dreading the dew point

September 14, 2011

I normally post in the evenings, but this morning I’m so anxious, I figured it was time to write earlier.  It’s mid-September and after some lovely cool days, today the temperature and the dew point are both up, which means my pain is too.

Now, on a different day, this might not be so bad.  It’s going to be hard for me to walk, so on a different day I would drive to work.  I also have plans after work, and I’m stubborn and refuse to miss them, so I’d drive there too.  Then afterwards, I would drive home.  In between, I’d stay off my feet as much as possible.  It wouldn’t be ideal, but I’d make it work.  After all, this is why I bought a car.

Unfortunately, today is not a typical day.  Thanks to city construction in my neighborhood, there are very few parking spaces for a whole lot of cars.  That means that if I drive to work, I’ll lose my parking space (which is already several blocks away), and when I get home, I’ll have to park so far from home that I may not feel up to walking it.

There’s no good answer here, just uncertainty, frustration, and pain.  Wish me luck.

 

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1 Comment | Expectations, Frustration, Pain, Parking, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

How do you explain “it”?

September 13, 2011

I came across this video today, and it got me thinking about the different levels of understanding that other people have.

 

Of course, the people who best understand what it’s like to live with chronic illnesses are the people who have chronic illnesses themselves.  If you’ve got them, you probably have a pretty good understanding of the difficulties, the unpredictability, the social isolation.  Yeah, fun stuff, right?

 

I’d say the next layer are the people who knew me back before the illnesses/symptoms.  These are the friends and family who don’t have CIs themselves, but they’ve watched me go through it.  They’ve been there for me, supported me, seen the ups and downs.  I may not tell them everything, but they know more than anyone else possibly could.  And they know what to expect.  They don’t get upset or even question if I have to cancel plans at the last minute.  They ask in advance if I need to sit down, if I need different food, if they can help in any way.  These people make it all more manageable.  Thank you.

 

Then there are the strangers who just assume they understand.  They don’t get it.  On good days, I try to educate them.  On not-so-good days, I just ignore them.  I’d love to educate everyone, but some days, it’s just not worth it.

 

Hardest of all, there are co-workers, acquaintances, and new friends.  These are the folks like in the video above.  They honestly want to understand, they truly try, and most often, they miserably fail.  They equate my illnesses with their recent bout of flu, they think my pain is like the time they sprained an ankle, they assume my exhaustion can be cured as theirs can, by going to bed early for some extra sleep.  They don’t see why my health problems are so different from theirs, why I can’t just push through the symptoms.  It’s harder to educate them because they are close enough to really care, so they offer too many unhelpful suggestions.  It’s important to educate them because I will keep coming into contact with them over and over.

 

Over the years I’ve gotten better at explaining my symptoms and limitations, but I still haven’t found a way to truly convey it all.  If anyone has any suggestions, I’d love to hear them.  In the meantime, I’ll just keep trying to get my point across, a little bit at a time.

 

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Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Isolation, Kindness, Limitations, Rants, Raves, Support, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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