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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Painful painkiller politics: the double standards of addiction

February 23, 2012

This week’s Chronic Babe carnival is about how prescription painkillers are handled in this country.  The article The War Over Prescription Painkillers got a huge response; many people feel strongly about this issue.  I am one of them.

The pain started when I was 12.  It was sporadic and manageable.  It changed when I was 16.  It became constant and severe.  On a good day, the pain was at a 6 or 7 on the now-familiar pain scale.  If only there had been more good days.  The pain was 24/7.  I learned to eat through it, sleep through it, go to school through it, be a teenager through it.  I did not learn how to properly manage it.  No doctors sent me to a pain clinic.  There was some vague talk about painkillers, but I was scared, and no one properly explained them.  No one offered coping mechanisms.  That was back in the 1990s.  I would have expected things to have improved by now.  I wish I’d been right.

I wrote before about my feelings about medical marijuana.  I think people (meaning politicians) need to get over the stigma of it, and accept that if it can help people while imparting relatively few side effects, then it should be prescribed like any other substance that helps people.  It all comes down to the stigma.  And that’s what’s happening with the current state of painkiller prescriptions.  There’s a stigma, and that’s stopping people from getting the medications they need.

The question is simple, really: is it worth risking the well-being of the many people who could become addicted to painkillers if it means helping those who are in pain?  Well, let’s examine a few similar situations.

  1. Plenty of people like to gamble.  I’m one of them.  From time to time, I’ll buy a lottery ticket.  Sure, I know I’m probably throwing my money away, but it’s fun to dream about what I’d do with the winnings.  Some people get addicted to gambling.  This can harm those who are addicted as well as their loved ones and society in general.  Far from making it illegal, more states are making it legal now, including my own state of Massachusetts.  And it doesn’t help people with serious illnesses.
  2. Many people like to drink.  Some people go out for a drink or two, then safely go home.  Some people are addicted to alcohol.  Many people are killed by drunk drivers.  The people who drink are harmed, and so are their loved ones, strangers, and society.  Is alcohol illegal?  Well, Prohibition really didn’t work out too well in this country, and even that wasn’t a full-out ban.  These days, drinking is embraced.  Social events often involve alcohol.  Religious events often involve alcohol.  Work events often involve alcohol.  And it doesn’t help people with serious illnesses.
  3. A lot of people like to smoke.  Some smoke a lot, some smoke rarely.  Some people are addicted to cigarettes.  Smoking can kill the smokers and also the people who are exposed to their smoke.  Smoking can even detract from some workers’ productivity (add up all those cigarette breaks, and the smokers at my office spend a lot more time away from their desks than I do.)  And so now smoking is illegal.  Oh, wait, it’s not?  Really?  Hmm….  And it doesn’t help people with serious illnesses.

I could easily go on.  The point is, we do not ban items or practices because they may be abused by a minority.  if the item or activity is deemed safe overall, we allow it.  [Note: Cigarettes don’t fit this category – if they were a new invention, free of lobbying, I doubt they’d get past the FDA, but that’s just my own guess.]  So why are prescription painkillers so stigmatized?  Why are they less socially acceptable than gambling, drinking, and smoking?  I think it’s precisely because gambling, drinking, and smoking are for everyone (who  is of a certain age) whereas prescription painkillers are only for “sick people.”  The majority want to believe they will never be in need of these medications, so it is easy enough to say that their primary purpose is for use by addicts and sellers.  These people don’t want to see the real need; it’s easier to turn away from it.  But that doesn’t change it.  The need is real, and it’s here.  There are a lot of potentially dangerous substances in this world and we can’t remove them all.  Let’s not allow fear to take away something that is so beneficial to so many.

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

1 Comment | Educating, Expectations, Frustration, Healthcare, Pain, Politics, Rants, Symptoms | Permalink
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High on life and Prednisone

February 17, 2012

After months of feeling tired, run-down, and sometimes even fatigued, I suddenly had two good days in a row!  I was so excited that maybe something could be changing.  I mean, I wasn’t about to do some huge amount of activity, but I could do a bunch of little things and still feel good.

And then I remembered that I had taken Prednisone these two days.  Damn!

The clinical details aren’t important.  It comes down to this: trying to prevent physical and mental harm, and also trying to avoid another long stint on Prednisone, my doc and I agreed that I’d take the steroid for just a few days, including the taper.  It seems to be helping the pain that it’s supposed to treat, but it’s too soon to be sure of that.  In the meantime, it gave me an energy boost that is both exhilarating and depressing.

It’s a bit depressing to know that this energy burst probably won’t last, but it’s also so wonderful to remember how it feels to not be tired all the time.  True, even with the drugs I’m not exactly about to take a super long walk or go to the gym, but yesterday I saw a doc, read at the library for a couple hours, then hung out with a friend at her place for an hour (and even played with her kid a bit), then came home and was a bit tired, but not really worn down like usual.  And for the last few months, that would have been too much activity for one day and I would have felt horrible the next day, but today I’m actually ok.

It’s always the same old thing: I know I could take Prednisone long term and feel better.  I could go back to work, hang out with friends, date, travel…. get my life back!  But I’d also be slowly poisoning myself, and that’s not ok.

Then again, living like this isn’t ok either.  There’s no good answer.  I’m going to try some dietary changes and maybe that will help.  In the meantime, I’ll be holding onto the precious memory from this week of what it feels like to do things without feeling exhausted.  I can hardly wait to feel that way again…. one day.

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

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What to say to illegal HP parkers?

February 15, 2012

Anger.  Disbelief.  More anger.  How can someone be so selfish, so arrogant, so self-absorbed that they think it’s ok to illegally park in a handicapped parking space?

I’ve written about this before and I’m sure one day I’ll write about this again, but it’s an important topic and one that seems to affect me often.  This time, it was last night.  I was in a lot of pain, but I was determined to go out.  For one thing, I hadn’t left the house since I got home at noon the day before.  That’s a long time to be stuck indoors.  Plus, if this followed its usual pattern, there was a good chance things would get much worse soon and I might not be able to leave my apartment for several days.  Besides, it was a singles party on Valentine’s Day!  Where better to enjoy some flirting?

I could barely walk, so taking the T was out of the question.  I knew that walking to the car would be tough, but if I could manage that, then I’d just have to hope I’d get a parking spot near the place.  Hopefully it would be the handicapped spot directly in front.

As I arrived at the place, I saw the car in front of me take the handicapped spot.  Damn!  There were no others, so I circled, and finally parked in a handicapped spot a block away.  It was not a fun walk (actually, limp) to the place, but I made it, and knew I’d just have to be careful to leave early enough that I could make it back to my car again.

After going through all of that, imagine how I felt when I walked past that car and saw that there was no decal on the license plate, and no placard on the visor or on the dashboard!  What gall!  I would have yelled at them, if I had any idea where they were.  I wanted to leave a note on their windshield, but I was too angry and I didn’t have a pen or paper.  They must have seen the sign – anyone who parks in Boston knows to check out the many complicated parking signs, and this one was pretty obvious.  So what then, they assumed it was ok?  That no one would notice?  It took 20 minutes for me to circle around twice, finally park, and then walk back.  And I sure as hell noticed.  How many others would need that space while this jerkwad was squatting there?

There is NO EXCUSE for illegally park in a handicapped parking space.  None.  Zilch.  Zero.  Nada.  It will NEVER be ok!

So back to the part where I didn’t have a pen and paper.  I’m thinking that I should start carrying flyers in my purse and in my car and leaving them on the windshields of offenders.  I’m ready to do it except…. I don’t know what to say.  Crazy, right?  Sure, I’m a talker and a writer, but this is different.  I want to come up with something that gets their attention and makes them actually think, or at least cringe.  I’m thinking I should go for guilt.  Here’s my first draft:

Because you parked here, someone who needs this spot can’t have it.  Be glad you’re healthy enough to not need it!

But I ran this by a friend and she said that it’s too earnest.  So what instead?  Your ideas please!!!  Post a comment here, tweet me (@CIRants) or send a note (msrants at gmail).  What can I say that will simply get someone to think a bit before they do it again?

I promise you, when I get the right line, I will print it on brightly colored paper and stick it on the windshield of every offending car I see.  I can’t wait to get started.

 

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

7 Comments | Educating, Expectations, Frustration, Insensitive, Limitations, Parking, Rants, Symptoms | Permalink
Posted by chronicrants

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