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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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

Bodies going bezerk

September 6, 2011

Any day can be unpredictable when you’re dealing with an autoimmune disease, but some are worse than others.  My guess is that today’s problems are worse because of my meds, but it could be the conditions themselves, or the weather, or just randomness.  Who knows?  I sure don’t!

A dog accidentally scratched me the other day while we were played.  It left a mark, but didn’t break the skin or anything.  The next day, there was a small bruise.  Today there are 5 bruises, some large, and they’re blue and sensitive to touch!

Sunday night I got what I thought were 3 mosquito bites.  The next day there were at least twice as many.  Today there are even more!  Maybe they aren’t mosquito bites after all?  Maybe my body is telling me something?

And then last night pain set in, along with some swelling.  Great.  It hasn’t gone away yet.

I was doing ok a few days ago, and now my body is going haywire.  I don’t know what caused it.  I don’t know when it will go away.  In the meantime, I’m treating myself to a night of tv and unproductive web surfing.  Productivity can wait until I’m feeling better.  Tonight is about relaxing.

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

The dreaded look of genuine concern

September 3, 2011

I have found that there are three types of concerned looks.

First, there is the look of fake concern.  I’m sure you know what I’m talking about.  Someone doesn’t really care, but they try to look concerned because they know that’s the socially acceptable response.  I ignore those.

Next, there is the look of detached concern.  This is the one where someone really does feel bad for what I’m going through, and they want to sympathize, but they’re not close to me, so their concern is more general.  This is the concern you would feel for a stranger when you hear about something terrible they are dealing with.  The concern is real, but it’s not personal.

Finally, there’s the look of pure, honest concern.  This comes from a loved one who really cares.  Their concern is genuine.

It’s this last one that’s haunting me right now.  A friend recently asked me about my latest treatment.  I answered her with the truth, something I don’t tell many people.  She asked about other options if it doesn’t work.  Again, I told her the truth.  Now I can’t get the look on her face out of my head.  She was really concerned about me.  I wanted to reassure her that everything would be fine, but of course, I don’t know if it will be.  I love that she cares.  But that look just makes me feel bad.  I hate that I’m making people worry.  Of course, I’m not the one making them worry, it’s the illness that makes them worry.  It just doesn’t always feel that way.

She is one of my oldest friends.  We’ve known each other for 22 years.  (Wow, I guess I’m older than I thought.)  We did our elementary school science fair project together.  We’ve seen each other through divorce and dating and children and many jobs.  Of course we care about each other.  I just wish I could tell her I’ll be ok.

Leave a Comment » | Expectations, Isolation, Kindness, Pain, Rants, Raves, Support, Thoughtfulness | Permalink
Posted by chronicrants

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