Fearing disbelief

March 5, 2012

When I was in 7th grade, one day I suddenly had a lot of pain in my wrist.  My parents brought me to a doctor, who told me to wear a splint for 6 weeks and it would be all better.  Boy was he wrong!  This was to be the first of many symptoms.

Fast-forward to the tender age of 17.  I had seen many doctors – internists, orthopedists, surgeons (yet for some reason, no one suggested neurologists or rheumatologists) – and they didn’t know how to treat me.  They suggested I see a different kind of doctor: a psychologist.

I have nothing against psychologists.  In fact, I have a big problem with the social stigma surrounding mental health in the United States.  But in this case, it was upsetting that the doctors all thought this was in my head.  Then some family and friends started to think so too, and that was even worse!  Some thought that I was making up the pain in order to get attention.  Others thought that my subconscious was making up the pain.  It got to the point that even I started to wonder!  My mother was the one person who never believed their hype – she always knew that the pain was real.  I am so thankful for her.  I can’t imagine what would have happened to me if she hadn’t been in my corner.

My disability benefits were due to run out last week, and try as I might, I can’t get the overworked case manager to call me and tell me if I’m approved for a few more weeks.  I was worrying about this today when I suddenly realized why I’m so nervous: I’ve had years of people not believing me, and what if the insurance company stops believing too?  Those doubters when I was 17 were only some of the doubters I’ve faced.  There have been so many.  I still face the problem now, but I have a better handle on dealing with it.  With an insurance company, though, it can be very hard to argue. There’s no real person to convince, just an entity.

Now that I’ve recognized the fear I feel, the lasting affect of those years of being doubted, I hope that I can overcome it.  I hope that I can feel confident that people will believe me (or at least that I’ll convince them easily enough.)  It will take a lot of work; afterall, I’ve been facing the disbelief for many, many years.  Still, now that I recognize it, it’s time to get over it.

I refuse to waste any more energy on worrying about what other people think.

~~~~~~~~~~

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Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Milestones, Pain, Rants, Support, Symptoms | Permalink
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At a loss for words: Where’s our CI vocabulary?

March 4, 2012

I’ve heard the rumor that the Eskimos have over 100 words for snow.  That’s a myth.  There is more than one Eskimo language, and there are a lot of words for snow, but not an usually large number.  For example, in English we have snow, sleet, ice, hail, flurries, slush, blizzard, etc.

If we have so many words for snow-type substances, why isn’t there a word to describe the weird feeling I get in my stomach that isn’t quite nausea and isn’t quite queasiness?

Where’s our CI vocabulary?

Where’s the words to explain this feeling that’s tired, and exhausted, but more than that, but not exactly fatigued, and sort of sleepy, but not quite?

Where’s our CI vocabulary?

We have so many words to describe “pain” such as ache, sharp, dull, and acute, but where the one to explain the constant not-quite-sharp-but-not-really-dull pain that ranges from a 2 to an 8 on my pain scale on any given day?

Where’s our CI vocabulary?

When I have trouble walking and I sort of trip, and it’s not from pain, how best to explain it?  It’s like my depth perception is off, but I can see just fine.  It’s like my foot isn’t listening to my brain, except that it is.  It’s somehow a weird combination, like my brain doesn’t tell my foot to lift off from the ground far enough.  Where’s the word for that?

Where’s our CI vocabulary?

Symptoms have been around for years.  Personally, I’ve had symptoms since before we had the words “smartphone,” “netbook,” or “blu-ray.”  If society can invent these words so quickly, why haven’t we come up with better descriptors for our physical symptoms?  I think it’s time that we did. Let’s start making up words.  With Facebook, Twitter, PInterest, and all the rest, we should be able to spread them around faster than I can slip in slush.  Let’s get started!

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Where’s the fairness? Life and chronic illness

February 29, 2012

Life’s not fair.  We hear that all the time as children.  I think it usually goes something like:

Kid (whining): I want X!

Parent: I’m sorry, you can’t have it.

Kid (still whining): But that’s not fair!

Parent: Life isn’t fair.  Get used to it.

Sound familiar?  I don’t know when I stopped thinking about fairness in that way, but it must have been a long time ago.  I don’t really believe in karma.  I do believe that if you do good things, then good things will happen to you, but that’s because I think that if you help out the people in your life, then they will help you out in return.  It’s not because I think there’s a cosmic balance in the world.  I know many people disagree, but that’s my thinking.  So I know that fair isn’t relevant.

Maybe that’s why I was so caught off-guard today when I was emailing with a friend about how on earth I can plan a date when my pain levels are jumping all over the place, and she wrote back: Sorry to hear you’re hurting so much, it’s just not fair.

And here’s my response to her, verbatim: Nope, it’s definitely not fair.  If it was fair, this would hit murderers and rapists, and it would leave me alone.  I just want to get a nice job working at a little nonprofit, date, and go out with friends.  Nope, no fairness.  But then, that’s no surprise.

Yeah, I know I sound a bit bitter, but can you blame me?  I’m sure we all have those moments.  Because no matter who we are or how we act, we could get a bad illness.  Because there are horrible people in the world who are completely healthy, and wonderful people who are very sick.  Because there are horrible people with billions of dollars, and fantastic people who are starving to death.  Because life isn’t fair.

Most days, I know that means that I just have to make the best of it.  Some days, I wallow in the unfairness of it all.  Lately I’ve been picturing what my life would be like if I suddenly got better, and it’s a lovely life.  I would get a job at a nonprofit, helping people.  I would do volunteer work.  I would go out more and do more fun things.  I would exercise and take good care of my body.  I would work to raise awareness of chronic illness and what it means.  I would not be so scared to start a family.  And then I wake up and remember that that’s not my life.  Maybe it will be one day, but that’s unlikely.  So I’m back to making the best of it.  It’s not always easy, but it’s all I’ve got.

And tomorrow I’ll ignore all of the many things in life that are unfair, and just accept reality again.  For a while, at least.


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Pain: I’d rather be asleep

February 28, 2012

You know things are bad when the first thought you have when you wake up in pain in the middle of the night is, “Crap, now I’m going to be exhausted tomorrow.”

I guess a “healthy” person, someone who doesn’t have chronic pain, would have called 911.  But I’ve had enough pain over the years to just sigh, try to fall asleep, then give in and read a book.  I learned how to sleep through the pain when I was a teenager.  People have been amazed by that, but it’s a survival instinct.  Yes, when the pain is worse, I don’t sleep as well, but I can often sleep through the  lesser pain.  And miraculously, my pain hasn’t been too bad at night, so it hasn’t kept me awake.  That’s what made last night even more strange.

When I woke up, I first thought of the dreams I’d been having, so maybe those are what really woke me up.  But then I noticed the pain – everywhere.  Ok, it wasn’t everywhere, but it was in a lot more places than usual!  I did a quick assessment: “toes (not again!), knees (they never hurt when I’m lying down, except for weather-related pain – is it going to snow?), fingers (oh crap, that’s getting worse, and that just started a few weeks ago), shoulder (yow!  that’s a bad one, and completely new), elbows (uh oh, those never hurt before), and everything else…. seems ok so far.  Ok, some new pain, some old pain, and nothing I can do about either right now.  Better get back to sleep.”

After that highly technical assessment, I tried to ignore it all, but the pain was intense.  Around 4:30am I gave up and read a book for a while.  Luckily, later in the day I was able to fall asleep on the couch, and I took a 4 hour nap.  None of this is normal.  I never wake up for the day at 4:30am.  And I never take a 4 hour nap.  But the “healthy” person would have been worse off – I’m pretty sure they would have spent many hours in a hospital and learned nothing.

People are often amazed at the way I handle these things.  They say I’m so strong, and they admire that.  My response is, if you’d been dealing with chronic pain for 20 years, since your childhood, you’d probably react the same way.  What choice do I have?  Panicking won’t help one bit.  I’d rather roll over and go back to sleep.

 

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1 Comment | Decisions, Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
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