Time to stop editing my health

February 14, 2012

“Can you come to brunch on Sunday?”  Gee, why does that suddenly seem like such a complicated question?

I was invited to a potluck brunch for this weekend, and as I was giving my answer, it occurred to me just how many different answers I constantly give to that same kind of invitation, depending on who’s inviting me and how I feel at the time.  Right now I’m starting to flare (well, a flare within a flare) and that makes this weekend especially unpredictable (or maybe just predictable in a way I’m refusing to believe at the moment.)  There’s always the question of how much to share, and what do I really want this person to know?  And then I realized the most important point of all.  But I’ll get to that.

Invitation: I want to be there, but I know I might not be able to make it.  What to say?  I need an excuse, in case I don’t show up.

Close friend: I’m starting to have some bad pain in my foot, so I don’t know if I can make it, but I’ll be there if I can.  I’ll let you know, but it might be at the last minute.

Everyone else (these answers hint at the truth for less-close friends, and are totally uninformative for acquaintances): I may have to [insert weak excuse here], but I’ll try my best to be there.

Preparing: I don’t know if I can go, but even if I can, it might be tough.

Close friend: The pain is worse.  If I make it, I won’t be able to bring anything for the potluck.  Cooking isn’t happening now, and I wouldn’t be able to walk through a store to pick something up.

Everyone else: Um, by the way, is there parking at your place?  Yes, I’d normally walk, but I, um, have to be someplace afterwards and I’ll need my car.  Oh, and what floor do you live on?  Is there an elevator?  Oh, just wondering.  I, um, have a bad knee.

Day of: If I can make it, then all’s good, and if anyone comments on my limp or other visible symptoms, I’ll just make something up.  But if I can’t make it…..

Close friend: Damn this fucking pain!  Hopefully I can make it next time.  I hope you have a great party – let me know how it goes!

Everyone else: [Short email] I couldn’t get out of that other thing [mention previous weak excuse].  I won’t be able to make it, but thanks anyway.  Hopefully I’ll be there next time!

How do you handle this kind of thing?  I do this because it’s the best I can think of, but what I wonder what other people do and if there’s a better option.  I hate hate hate editing myself.  In all other parts of my life I just say what’s on my mind and it’s so much easier.

And then the most obvious point came up and whacked me on the head: Why do I do this?  Why do I make up different stories for different people?  Why not tell everyone the truth?  Obviously I wouldn’t tell a stranger the whole truth – that’s way too complicated.  But why not just say that I have pain sometimes, and right now it’s acting up, so I can’t predict if I’ll be able to make it to the brunch on Sunday.  Sure, they may have a lot of follow-up questions, but if I’m not in the mood to deal with it, I can always brush them off.  I can say that I can’t talk about it now, but I’d love to set aside a time to go over it with them later.  Why not?  

I think that I may just have to try this from now on.  It may not be easy, but balancing out the different lies and half-truths isn’t so easy either.  Besides, I’m generally a very honest person.  People think I’m honest to a fault.  The one thing I lie about is my health, and that’s just stupid.  I don’t have the physical, mental, or emotional strength to deal with that kind of crap, so why am I wasting my precious energy on it?  So for the next few months I’ll try telling the truth to everyone.  I can’t wait to see how that goes.  And it’ll have a fantastic added bonus: I won’t have to worry anymore about when and how to broach the topic – everyone will already know!

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

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!

 

It would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

2 Comments | Educating, Frustration, Insensitive, Intrusions, Isolation, Rants, Raves | Permalink
Posted by chronicrants

The stress of handling stress

February 11, 2012

“Avoid stress and get more sleep.”

That was my doctor’s advice when I was first diagnosed with an autoimmune condition.  After 11 years of symptoms, I finally had some idea of what was wrong, and the best he could do was “avoid stress and get more sleep”???  Was he kidding me?  After all, if it was so easy to do, everyone would do it, right?

Well, it’s not easy, but it is possible.  And I’m pretty good at it, especially for an uptight type A control freak.

But sometimes stress isn’t so easy to avoid.  There’s the stress of meeting a work deadline.  There’s the stress of handling these damn CIs.  But then there’s the stress involved with the illness or death of a loved one.  I’m doing pretty well with the first two, but this last one is really a problem.

I know what can happen if I let the stress get to me, but when the doctor says a loved one could die “any day now”…. well how is anyone supposed to not feel stress?  Today was a tough day.  She was in the hospital for the second time in just a few weeks.  And it was also the anniversary of the death of another loved one.  I couldn’t visit the hospital thanks to my crappy immune system, so I stayed inside, did laundry, watched tv, and worked on a project that I know she’ll love.  I just hope she’s around to see its completion.

Anyone would feel stress at a time like this.  I just have to find a way to handle it the bet I can.  Because I know what the stress can do… and I have to somehow make sure that doesn’t happen.

 

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Leave a Comment » | Decisions, Expectations, Frustration, Rants, Symptoms, Unpredictable | Permalink
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The double standard of pursuing treatments

February 9, 2012

But they must have some idea how to treat you!?

I’m so sick of hearing that, but somehow I found those words coming out of my mouth today.  I hate when people say that to me.  I’ve accepted that there’s no straightforward treatment for my CIs, that the best we can do is slow things down.  I’ll never be “healthy.”  I can handle that.

But I hold my friends’ health to a different standard.  Sure, the doctors can’t cure me, but they must be able to cure everyone else!  Besides, my friend has a diagnosis.  They know what’s wrong with her!  Why can’t they fix it?!?

I get very protective over my friends.  She knows this.  And she’s known me for ages, since years before I had any symptoms.  So when I made that comment, we both just broke out laughing.  Imagine, Ms. R of all people suggesting that there must always be a cure!

It’s a double standard of sorts, but one that I’m fiercely protecting; I want my friends to be cured.  All of them.  Even if I never get better, that doesn’t mean they won’t either.  I want them to keep fighting for results.  And I’ll be there to support them the whole way.  I just hope they don’t give up.

It would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Limitations, Medication, Support | Permalink
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