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

How much do you know?

September 12, 2011

What’s the biggest outside influence on your health?  I’d argue it’s politics.

 

It’s easy to get a bit self-absorbed when you’re sick.  That’s fine to do occasionally.  Then when you want to reach out, you probably turn to family and friends, right?  That’s good too.  But I hope everyone takes some time to educate themselves on local, state, and federal politics, because they do affect you.

 

Massachusetts has a lot of potential ballot questions coming up next year.  Some will affect me more than others, and I don’t know which.  Some of the questions could be about medical marijuana, doctors prescribing life-ending drugs, and changes to state health insurance regulations.  I’m sure each of these will eventually have an effect on me or on someone I know.  What are the laws in your state?  Is anyone looking to change them?

 

I’m not suggesting a Big Brother role here, but politics affects all of us.  Some of us may end up on Social Security Disability Insurance one day.  Some of us may need to stop working and rely on food stamps.  If you’re reading this, I’m pretty sure that health insurance matters to you.  Of the many health insurance changes that could come about as a result of President Obama’s plan is stopping health insurance companies from excluding someone based on a preexisting medical condition.  That means I could get health insurance anywhere in the U.S.!  For someone reading this in Canada or Sweden, that may sound strange.  For anyone in the U.S. with a health issue, it sounds like a fantastic safety net.  We’ll still have to pay for it (unless you qualify for Medicaid) but at least we’ll have it!  And what about legalizing medical marijuana?  I know that’s controversial.  I also know that when I took some in California last year, it was the first time in years that I wasn’t queasy.  I could even eat without feeling queasy!  That was a fantastic feeling, and one I’d like to have again from time to time.

 

My point is simply that politics affects us all, whether we want it to or not, so we might as well get educated and learn what is about to have an influence on our lives.

 

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Leave a Comment » | Decisions, Educating, Politics, Rants, Raves | Permalink
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City living: good or evil?

September 11, 2011

Now don’t get me wrong, I generally love living in the city.  It has so much to offer.  But that doesn’t mean there aren’t days that are incredibly difficult.  And in all fairness, if I lived in the city but had a driveway, this wouldn’t be an issue.  Sadly, I don’t have a driveway, so the next few weeks are going to be very difficult.

 

Last year I got rid of my relatively-young-but-laden-with-problems car.  I thought about not getting a new car.  For the first time, I was using public transportation to get to work.  I could walk to the grocery store.  I could use Zipcar for trips outside of the city.  But now matter how many work-arounds I considered, I always got stuck on what I’d do on the days I couldn’t walk even the two blocks to the closest Zipcar spots.  What then?  I’d be stuck.  So I got a car.  3 weeks later, someone crashed into it while it was parked.  It was totaled and I couldn’t drive it for 3 weeks while it was getting fixed.  Just a couple weeks after it came back from the shop, it got stuck in the ice that had formed where I’d parked, so I couldn’t drive it for about a week.

 

Now, the city is doing construction in my neighborhood, so from 7am-7pm I can’t park anywhere near my apartment.  Depending on which notices are correct, this will be for 2 or 3 weeks.  I’ve been asking friends if they might have an extra space in their driveway that I can use.  If not, I’ll park in another neighborhood, then walk or take the bus home, and go back every few days to move my car (they ticket if you stay in the same space for too long, even when it’s a legal space!)  I just have to hope that I don’t need the car for the next few weeks.  Lately, I’ve been driving to work more than taking the T (our subway) because I’ve been having fatigue and/or pain.  I really hope that stays at bay for a while.

 

I love living in the city overall.  I really do.  But I have to ask myself: why did I buy a car if I keep having weeks at a time that I can’t even get to it?

 

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1 Comment | Frustration, Intrusions, Limitations, Parking, Rants, Symptoms, Unpredictable | Permalink
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Planning for the unpredictable

September 10, 2011

The air is cool and clear, the sun is shining… it’s a gorgeous day here in Boston.  It’s a day to be outdoors!

So I guess I shouldn’t have been surprised when my friend called me up and asked if we could switch our plans from being indoors this afternoon to taking a walk around a pond.  It’s a great idea, actually.  I bet it’ll be beautiful, and I’ll love watching her little girls run and play.

I give a lot of credit to my friend.  She was very careful to make it clear that we could stay closer to home or do something else if I didn’t feel up to this.  She’s really great that way.  We’ve been friends a long time, and she “gets it.”  The problem is, I want to do this.  And I do feel up to it right now.  I just don’t know how I’ll feel afterwards.  I might be completely exhausted.  And I have plans to celebrate a friend’s birthday tonight, something I’ve been looking forward to for a long time.  So if I walk around the pond, will I be too tired later for anything else?  I won’t have much time to rest in between, unfortunately, because of how things time out.

I’ll just have to take a chance, and try to do both, and hope I don’t regret it later or tomorrow.  I hope this works out!  It would be so nice to be able to predict these things, but that’s just not possible.

 

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