Spreading the word on chronic pain and chronic illness

February 13, 2012

I found this great web site the other day, How to Understand Someone With Chronic Pain.  This is one of the more accurate and insightful sites I’ve seen.  The problem is, it only works if people read it.

I emailed this site to some specific people, I posted it on Twitter and on Facebook.  I’ve told people about it.  But I can’t force anyone to read it.  I’ve seen other good sites and videos, but again, they only work if people read the pages and watch the videos.

For the people important to me, I think that if I email them the site and tell them that it’s important to me, they’ll read it.  But then, these people already have a better understanding than most, since they’ve watched me deal with this for 20 years (or as long as they’ve known me.)  How can I get their friends and acquaintances to read it?

Really it all comes back to the same old issue: ignorance in the general population.  I’m tired of people suggesting that I’ll feel better if I get more exercise, or that I just need a good night’s sleep, or that I can’t really be doing that badly if I’m acting or looking so good.  I know that at some point I have to ignore people and just not care, but that can be very difficult to do.  I’ve learned to ignore strangers, but what about friends of friends?  What about coworkers?  It gets complicated.  We all have our thresholds, and lately I’ve been hitting mine.  A lot.

There’s no real point here, only that I hope everyone who reads this will email/post this site, or a similar one, to the people they know so that we can spread the education.  There are millions of people with chronic illnesses; we can’t pretend otherwise.  Let’s spread the word!

 

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Oh social life, wherefore art thou?*

February 5, 2012

I should be at a Super Bowl party right now.  Should be.  But I’m not.  Damn body.

Every year my friends host a party.  Most years I go.  Ok, to be honest, I don’t actually watch the game, but I do love the party.  Good company, good food, and sometimes I watch the commercials.  I missed it last year because of car problems, but I was determined to go this year.  All weekend I was thinking, yes, my body has been through a lot in the last few days, but I’ll still be able to make it, right?  WRONG!

Friday was the long drive across the state, playing with kids, then driving back (details in another post.)  Friday night I slept better than I have in ages.  Saturday was taking care of an injured family member, but only for a few hours, because I knew I needed rest.  Today was rest rest rest all day.  But I woke up exhausted, felt sleepy all day, then passed out in the afternoon.  I woke up on the couch right around the time that I was supposed to be leaving for the party.  Oops!  In that moment I knew I wasn’t going.

So here I am, sitting at home, hearing the occasional shouts from neighboring apartments, and wondering where my social life went.  Sure, I hadn’t been going out every night before, but over the last several months, as I’ve felt worse and worse, my social life has edged towards zero.  A friend asked me out to dinner yesterday and it suddenly hit me that it’s been a loooong time since I’ve gone out to dinner with anyone.  Probably more than a month.  And even yesterday I didn’t feel up to it.  The last non-family party I went to was New Year’s Eve, and before that…. I really don’t remember.

Tonight was supposed to be easy.  A simple drive, a laid-back atmosphere, friends and acquaintances who I like and who I haven’t seen in a long time.  Tonight was going to be a chance to get out an socialize.  Tonight was going to be fun.  I’m starting to forget what fun is like.  Tonight was going to be a chance to get out and be around people.

And then it wasn’t.

Here’s hoping that next year is better.  That next year I’ll be at the party.  That next year I’ll have a social life.  Let’s hope.

*Note: Yes, the title is a takeoff on the famous line from William Shakespeare’s Romeo and Juliet.  It’s not as poetic as his version, but then, I’m no Shakespeare.

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Adding insult to injury

January 25, 2012

My family has always been close.  Sure, there’s the occasional outlier, but generally we’re all there for each other.  We take care of each other.  And that’s what made yesterday and today so difficult.

In the middle of the night Monday, my grandmother was taken to the hospital.  She lives near me in the Boston area, and so do two of her children, my mother and an aunt.  My mother and my aunt took care of my grandparents yesterday, staying with my grandmother and taking my grandfather home to get some rest, then back to the hospital for another visit.  No one had gotten much sleep the night before.  My aunt slept at my grandparents’ apartment yesterday so that my grandfather wouldn’t be alone.  My  mother “slept” (but really didn’t get any sleep) on a cot in my grandmother’s hospital room.  I stayed home.

I want to be there, to spend time with them, to help, but I can’t simply because my immune system sucks.  There are too many germs in the hospital.  Norovirus is going around, and they have a case of pneumonia there too.  Even my sick grandmother told me it wasn’t safe for me at the hospital!  I wanted to argue, but the truth is, they’re right!

It’s bad enough when I can’t take care of someone because I don’t feel up to it, but this time I actually felt ok and I still couldn’t help.  I’m pissed off!  It sucks when I feel lousy, but then it has to intrude on my ability to help others?  That’s just so wrong!  I’m glad there is other family around to help out in times like these, but I should have been able to help too.  I’m lousy at handling my limitations.  I know that.  But this is just going too far.

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Recoloring the winter blues

January 20, 2012

This weeks’ ChronicBabe blog carnival is all about winter wellness and fitness and surviving the winter blues.  It’s a fantastic idea, since so many of us struggle at this time of year, and even those who don’t could probably use some encouragement and ideas.  Here are a few of my own experiences….

Winter is my best season and my worst season.  It’s the easiest and it’s the hardest.  Health-wise, it’s all sorts of contradictory.

On the one hand, a lot of my symptoms are triggered by hot and humid weather, so the cold winter is a welcome relief.  Others cringe at 30 degree weather, but I actually don’t mind it (but I can do without the 5 degree weather, thanks anyway.)  On the other hand, it’s dark, and even when it’s light out the sun is lower (less direct sunlight) and my skin isn’t getting much exposure since it’s all covered up in layers of warm clothing.  So I have fewer autoimmune symptoms, but then seasonal affective disorder (SAD) comes and rears it’s ugly head.  Plus, with snow and ice, I worry a lot about falling.

This has been an unusually easy winter in Boston.  Until last week, we had almost no snow.  This has to be some kind of record.  We’ve all been walking around confused, wondering where our winter went.  In fact, until a few weeks ago, it was unseasonably warm.  We’ve had 50 degree days.  We’ve had rain.  Best of all, we’ve had clear sidewalks!  I didn’t have to worry about slipping at all, so I was able to take a bunch of long walks, which is my best and safest form of exercise these days.  The key is dressing right: warm sweater, warm pants, super warm coat, and of course hat, gloves, and scarf.  And don’t be afraid to wear long underwear if you need it.

My motto is, it doesn’t matter how I look as long as I’m warm.  I have to say that in order to be able to wear the big pink coat in public.  I have Raynaud’s, so I’m careful to keep my core warm so that my hands and feet don’t get too cold (but honestly, they do anyway unless I wear the right boots and gloves.)  If I’m dressed well like this, I can take a half hour walk, and my big problem is that partway through I’ll be sweating.  It’s all about dressing right, and staying indoors when it’s dangerously cold.

Until the sidewalks are clear I won’t be taking long walks on them if I can help it.  I’ll wear my amazing boots with the fantastic treads, which are also super warm (even my toes stay warm in the coldest weather!) and I highly recommend them, but I’m still too nervous about slipping.  If I can hit my head in my own living room, (and I’m still hurting from that one) I better be extra careful on the ice.  There are alternatives, though.  There’s walking in a mall, walking through a museum, walking on a treadmill (boring, but it gets the job done) and plenty of other indoor walking possibilities.  One winter I did exercise videos in my living room.  They’re walking programs that involve additional movements (kicks, arm swings, etc.)  But when there’s no other choice, I’ll walk outdoors in my good boots and with a lot of care.

The thing is, I’m not big on exercise.  I’m really a couch potato by nature, but I know it’s good for me.  I feel better physically.  And it helps the SAD.  Being outside during the day is huge, even on cloudy days.  Fresh air and a little sunshine go a long way.  I won’t pretend it fixes everything, but I have noticed that I’m happier and more energized on the days that I take a walk outside.  The only other things I’ve found for the SAD are a light box and reminding myself that it’s temporary.  Already the days are getting longer, and I look outside most evenings and celebrate that it’s still light out at 4:45.  Those bits of appreciation really do help.

Each season can come with it’s own problems, but there are often workarounds.  The trick is to find them.  I wish well finding yours.

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