Day 210. What NOT to Say to a Chronic Illness Sufferer

I saw a great graphic on a fellow blogger’s site that should probably be required reading for just about everybody. This blogger borrowed it from chronic-illness.org, run by a cartoonist with multiple chronic illnesses.

I was happy to see a site about illness that wasn’t all about wallowing in misery (for an example, see my above paragraphs). This cartoonist has a number of funny sayings.

In large text, on one, for instance, we see “Coping,” and right afterward, the word in tiny font “sorta.”  Hilarious. I love things that tell the truth like that. Or how about “My disabling chronic condition is more real than your imaginary medical expertise.” Booya!

But I really appreciated “Things NOT to Say to Someone with a Disabling Chronic Condition.”  Maybe you have to be sick to appreciate this, but trust me; it’s funny.

My mother suggested that I preface this explication with a disclaimer.  She wants me to convey the understanding that people say things like this out of love, and because they don’t know what else to say.  Point taken.  Still.  A few of them should be without absolution.

But you don’t look sick.  How can I possibly respond to such an accusation? (Sometimes the idea is couched in “You look great,” dripping in irony, as in, “There is not a thing wrong with you, so why don’t you just cut the crap and deal with life like everyone else?”)  My current favorite is to launch into a discourse on how having a genetic defect in your collagen actually causes you to look young (it does) because the wrinkles mainly stretch out.  (Bummer that you don’t live long enough to laugh at all your elderly looking friends, but still….).

Everybody gets tired.  I get tired….of your stating truisms.

You’re just having a bad day.  Well, hell.  I have bad days a lot more than I care to count.  I particularly enjoy them in the middle of the night, when it feels like my hip joints are breaking, so I am afraid to roll over, yet have to roll over, or I’m afraid they won’t move when I wake up.  Just like you, I’m sure.

It must be nice not going to work.  I have to admit that I like being able to write, read, and paint.  But you have to understand that this is the booby prize for me.  I studied so hard to get my Ph.D. to be a college professor because I loved what I did.  It was my life, and I thought I would do it forever.  It breaks my heart not to do it still….but I dissociate myself from that pain, so that I can carry on and be a happy person.  Writing and reading both are very difficult for me anymore, painfully slow.  I am aware that its a gift that I can do them at all, and that I can learn to paint.  But it’s not nice.  

I wish I had time to take a nap.  Oh really?  I wish I could lie down and not fall asleep.  I wish I did not have perpetual exhaustion.  That’s such a self-centered thing to say to a sick person.

…If you’d get out more.  More than what?  The more I get out, the sicker I get.  The one thing a smart  person with chronic illness learns is her daily capabilities.  I’m good for one main thing daily.  Then it’s a nap, or I am sick all night and for several days beyond.  My last three experiences with pushing my tolerance have landed me in the hospital, which is its own fresh hell.

You’re just getting older.  You are too.  How do you feel?  Do you have all my symptoms?

If you’d get more exercise….  Well, if you read anything I wrote about physical therapy, hopefully you know what I would say to you about this.  Normal people make progress in six weeks of physical therapy. But you aren’t talking to a normal person.

It can’t be that bad.  Um.  For, please.   Are they _____-ing kidding?  Anyone who says this, I wish my disease on.  Did I just say that in public?  Holy smokes.  That is a pretty harsh judgment.  None of you would ever have said that anyway, right?

You’re just depressed.  Oh my.  I just had to erase a line of invective.  I have heard this one from people as illustrious as my esteemed psychiatrist, my mom, and Dr. Mean (of 365 Days fame).  It feels like the ultimate sock in the gut to hear someone say, effectively, “You’re crazy.”  It took an explosion in my leg to convince others that I wasn’t crying wolf.  By the way, I had plenty of symptoms of depression, so they thought they were doing the right thing. And yes, I have been depressed, but that was the result, not the cause of my illness. It seems to me that one keenly logical response to what I have been through might have been to become depressed.  End of story.

There are people worse off than you. I am guilty of harping on this one to myself, or of its ancillary, “It could be worse.”  Truisms.  But I’m okay with them.

You’ll just have to tough it out.  This one makes me see red–in the tradition of the cartoon character bull’s eyes turning red and exploding in a rain of fury.  Maybe it has something to do with its origins for me:  On my first Girl Scout camping trip, I realized I was going to have to unroll my sleeping bag on a dirty floor and sleep with a bunch of biatches in the same cabin. Then I fell into the Chesapeake Bay.

That was the proverbial straw:  I ordered the troop leader call home because I was not staying (can you imagine what a bundle of fun I was as a child?). Guess what my dad said? “You’ll just have to tough it out.” I heard that a few other times when it would’ve meant the world to have help and support instead. So that sentence just means all kinds of fierce madness to me. Why would anyone say it to someone who is sick?

You just need a more positive attitude.  HAH!  Well, hearing this from someone who isn’t sick makes me laugh, certainly!

This too shall pass.  They can’t be serious when they say this.  It is not going to pass, unless they mean my passing on.  Hah!  Now I’m really laughing!

Well, so I thought that was worth a few laughs–maybe enough laughs to get me through sleep tonight and another session of PT tomorrow.  It may be a great one, right (I say, working my positive attitude)?

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Day 215. My Secret Pain Self

You may have noticed that I haven’t been posting quite as much of late.  That has been for two concurrent reasons.  I have been in the middle of writing about how fantastic my phsyical therapist is–because he is really great. Then at the same time, I have been in an existential crisis about how miserable I am because I am in pain and horribly fatigued as a result of physical therapy.

Over the weekend, I was so miserable; I had to miss doing two things I really wanted to do, and I barely un-beached myself from the couch long enough to eat another caramel rice-cake with tofutti cream cheese, honey, and cinammon (my absolute favorite GF, Dairy-free treat…but more than three of those a day will put a girl into two size 22 mu-mus, sewn together, mighty quick).

But I digress, as usual.

I went to PT on Monday and told Mike about my misery.  He was very concerned and jumped right into diagnostic mode.  At the same time, though, he reminded me that I had come in happily last week and announced that my shoulders had never been so relaxed in recent memory and that I thought we were making real progress with this body work.  I do have a vague memory of saying that. Here’s the problem:  When I am in pain, I can only think: pain,pain, pain, pain.  When the pain is over, I can’t remember or describe it clearly (without referring to journals).  Seriously.  He asked me to explain what happened over the weekend that was so bad, and I was hard pressed to elaborate.  It’s embarrassing because it sounds like I am making it up.

I think I have a dissociative response to my pain, to some extent.  On a large scale, people who have a dissociative response are really in trouble, because they are disconnecting from themselves or the world; for example, dissociative identity disorder is the present name for what in the past was known as multiple personality disorder. But a more adaptive form of dissociation frequently occurs to people in something as mundane as, say, a car accident; dissociation from the fright of the situation is gives the person a safe place to stash the self, so people often report having watched the accident occur as though they were watching it on TV. Disconnecting from the whole scene to process the deep and difficult feelings, including pain, may be the safest way for some people–like those of us with very intense feelings–to do it.

Maybe I disconnected one tiny bit of myself that day my parents walked me down the hall of my apartment building and I went to the hospital with an exploded leg aneurysm.  Without any doubt I had the sense of standing above the stretcher where I was lying and watching the radiologist tell me, “Yup!  See!  This is an aneurysm right here.”  And I looked at the angiogram with great interest, as though it belonged to that imaginary patient we always see on television. That dissociated piece of myself has undoubtedly remained….well…split.  And it has a tough time articulating much of anything, particularly pain.  I am sure that is why, on the rotten days like today and yesterday, I tend just to fall asleep.  When that dissociated part of me takes over, I’m not available for talking or thinking much, so the porch light’s off.  Nobody’s home.

There’s going to have to be a whole chapter on physical therapy in my book.  It’s complicated.

Day 246. Weighing the Pain Scale.

One of my favorite bloggers, an amazing college student, writes Simple and Well, a blog about her experience with Hypermobility Ehlers Danlos Syndrome.  It differs from the type I have (Vascular); each of the types shares the main symptoms with the others, the identifiable ones being hypermobility, skin fragility, joint pain, etc.  My symptoms of hypermobility appear on a small scale (causing joint pain), while the activities of daily living cause this blogger’s joints to sublux, or to come out of their sockets.  Rolling over in bed, for example, may cause her hip to come completely out of its socket.  Her shoulder, she writes, has the tendency to “pop,” as do her ankles.

So what does she do?  She tapes up her loose joints for support and goes swimming to get a good workout.  That is one tough young woman.  She is my current hero.

Mosby Pain Scale

Last week, she wrote her own version of a pain scale.  If you haven’t spent much time in the hospital of late, you may not be familiar with the Mosby Pain Rating Scale that incorporates the McCaffrey 1-10 scale numerical reference with words along with the Wong faces scale (image right). I’m particularly fond of the faces of misery that accompany the numerical scores for those of us for whom numbers are particularly meaningless.

The pain scale is a good idea as an attempt to quantify and measure pain empirically, when viewed from the perspective of the nurse, doctor, or pharmacist.  One must measure the pain to treat it. However, from the perspective of a patient, those faces of misery seem laughable. How can they possibly measure pain, an entity that is unquantifiable and incomparable from person to person.

I’ve often thought about this when I have confronted those infernal frowning faces in the hospital or the doctors’ office. How does mundanity of my daily #4, “Hurts a little more,” or on the McCaffery Scale “Moderate,” have any mathematical, or for that matter existential association with the things-are-getting-worse-ness of a #6, “Hurts even more” or on McCaffery still “Moderate.” In fact, I’m still “Moderate” until I am a #7 on McCaffery, which is a long time before a medication decision might be made.  But by the time I am a #7, it may be too late to take a moderate dose of medicine because it is important to treat pain before it becomes too serious; otherwise, it is very difficult to manage.

The rating system becomes more complex because sometimes my leg (where I had an aneurysm rupture) may feel like that face above the #6 “Hurts Even More,” but the rest of my body is pretty okay.  I can manage having that pain better than some other days.  Thus, I can manage taking less pain medication than I would take on a day when I was feeling a #6 AND every joint in my body hurt on top of it.  I wish there was a #6+ or a #6J-with feeling.  That, to me, would have some real empirical value.

Still, I was pretty sure learned from my venture into pain research that I am a big, fat baby. If I were to follow my favorite blogger’s pain scale, I believed that the numerical scores I would assign myself daily would be dramatically lower.  I quite frankly assign pain scores the way America assigns grades on English papers: in a ridiculously inflated fashion.

I have spent the last week or so wondering what that inflation says about me. Do I misunderstand the pain scale? Am I malingering for attention? Love from doctors?  More pain pills? I worry about these things constantly.  I am a baby, no question.  If I just powered through this, I would have less pain.

So then I had a epidural injection on Friday. I absolutely detest getting them, as I guess anyone would hate having a needle poked into a vertebra and into the nerve.  So the doctor uses an X-ray machine to find the nerve precisely; then he injects me with enough local anesthetic so that I don’t jump off the table.  Then, he stimulates that nerve to make sure he has the one that is causing the leg pain—so I feel not exactly pain, but just sensation all the way down my leg and even in the foot where it hurts.  Then, he injects tons of anesthetic, followed by cortisone (which will hopefully block the pain for a few months, until he does it again).

The payoff for the misery of having the injection is standing up and walking off of the operating room table:  about an hour of pain-free walking around.  It hurts like hell in my lower lumbar, where he poked me, but I don’t care.  My leg doesn’t hurt for the first time I can remember.

My doctor’s office building is in Bethesda, kind of a tony address; right across the hall from his office is the snack bar, where one can find the expected coffee and candy bars.  However, the reason we drive 45 minutes to Bethesda instead of seeing the doctor five minutes away in his D.C. office is that the Bethesda snack bar also sells Swarovski crystal barettes and hair things, as well as designer knockoff purses (not that I would ever buy one of those).  So I have about a half hour to walk around this store without having to figure out a way to stand on one leg, or lift it up bent and rest it on the other.  The important thing is, I never even think of my leg this whole time, not how my shoe feels, or whether my sock is cutting into me, how long I have until the pain pill, not one thing. When this happened, I realized that I am not exaggerating when I say that the pain never goes below a #4, even with three narcotics.  When I had a complete nerve block with anesthesia, on an otherwise pretty good day, well now, those pain faces smiled for quite some time.

“Loosey Goosey,” the blogger of Simple and Well, tells me that someone has gone to some trouble to write a better, more sensible comparative pain scale.  This one has some good points; however, I think it is skewed to the lower side.  According to this scale, #5 is pretty intolerable (like trying to walk on a sprained ankle). Uuummm…okay.    Call me inflated all day long, but that just has a lot more seven-ness than five-ness, for me, folks.  Some of the distinctions made to explain the pain, though, are so clear and so apt.  For example at #6, it becomes difficult to hold a job.  Yes!  So clearly it does.

Without a doubt, if the aim is to standardize the description or definition of pain, then more work remains to be done on standardizing the pain scale.  Being able to describe or define your pain may seem esoteric to you, but if you’re in the hospital, in pain, you may find yourself at the mercy of healthcare givers who are suspicious of your motives.  One thing to keep in mind (I learned this thanks to Cathy, who sent me a very interesting journal article): beginning in March 2012, hospitals will receive large amounts of Medicare and Medicaid funding based on the patient evaluation scores they get on pain control.  That means that the government is requiring hospitals to do a good job at controlling your pain in the hospital.  I’m not even on Medicare, and I’ve been surveyed many times already.  So, whether you use the happy and sad faces, or whatever numerical score you devise for yourself, keep in mind, rating your pain may be vital to you in the future.

Day 373. Energy

Atlas sculpture, New York City, by sculptor Le...

Did you notice?  I missed a day. Day 374…completely gone. One whole day of important writing I could have done.  If I don’t finish a book, you’ll know why.

It was for a great reason.  I saw my oldest, dearest friend, Scott, yesterday.  We went out for lunch and celebrated his good health — he’s recovering from an ungodly illness that makes mine pale in comparison.  We hadn’t seen each other in many, many years, and it was just uncanny that we would find each other again and both have these awful illnesses at the same time.  We compared scars and all.  Mine are bigger and uglier.

That was worth missing some writing for.  I have a hard time remembering to keep things like that in perspective when I am trying to write, in pain and fatigued. It doesn’t seem like a lot to ask — to have the energy to go out for lunch, walk across the street to and from the parked car, and then hang out at home for a couple of hours.  Even after a nap, it seems like I’m not demanding much, then, to write a blog entry and then about four pages of my book.  No going, though.  (A normal person would give up, put the computer away, and enjoy some crap T.V. or read a book.  Not me.  I stared at that screen for hours in a cold sweat.)

I have been learning this energy lesson gradually now for more than ten years, and nowhere has it been a more difficult lesson than with my friends.

I have many good friends.

When I got sick, though, I began to feel like I was turning into the statue of Atlas, as though doing any single thing more would add to my load of holding up the world.  Just the act of going to work all week was such a drag on my dwindling energy that the simple, kind request of a friend to go to happy hour sent me into a spiral of angst.  I knew I wanted to go but also that I could not possibly drag my foot forward another centimeter.

My college and graduate school friends had to develop a great deal of understanding about the situation, having long ago known my party girl self. I used to be the one who instigated the fun, who extended the night the latest.  Now I have become the one who always says I can’t go out or that I have to leave early — or I just plain cancel the plans at the last minute because I am too sick to go.  Soon enough, people have eventually stopped remembering to call me.  It must have seemed like I didn’t like them very much. Newer friends, like the people I worked with at Northern Virginia Community College never knew me when I was not at least little bit sick, a little bit tired.  So they have not been so easily offended when I have declined invitations.  Still, never going out with the people you like the best is no way to make friends.  (Consider this: I am an equal opportunity decliner.  The people I like best obviously includes my family, and I have missed birthdays, Christmas, Thanksgiving, lots of things, because I didn’t feel well.)

Usually, work at the college was too busy to go to lunch with friends because we all had to teach, meet with students, or attend committee meetings.  However, on Friday afternoons, few classes met, and colleagues would sometimes be on campus and go to lunch. The week before school started was also a big lunch-going time.  I remember fall 2006 keenly because all the colleagues I thought were my friends had made lunch plans without me.  I sat at my desk and cried like a sixth-grader.  It felt just like sixth grade too, and I laughed at myself as I cried at how silly I had been to take the situation so seriously. I could logically see how they would exclude me.  They had no idea how grave my condition had become, and I had no explanation for them about how it had become that way.  So I sat at my desk and worked instead.

As I have gotten sicker, I have become even less connected to friends.  It has felt, and frequently still feels on bad days, like social events with friends and family (particularly among large groups) are so taxing that I need several days of quiet rest between them or I feel sick for a long time.  Even answering a lot of email at once makes me feel like I have been shouted at (please don’t stop emailing me, though!  I will answer you!).  I feel engulfed in the many tasks involved in answering those many emails.  It feels like it will take hours, though when I finally get to it, it only takes a matter of seconds to respond to most messages.

I went to the mall today, on Saturday, with my parents.  The walking was difficult for me — we went only about the distance of three city blocks.  The difficult part is afterwards, about an hour later, all the joints from my hips downward are in agony.  But also the number of people in the place drains my energy.  By the time we left, my body was like a dried out hunk of bread, crisp and crusty, barely able to move.  I had to rush home to the heating pad and a huge lunch (I get really, really hungry, as though I have run a marathon) and then to send my parents away, God love them.  I just had to be in a quiet place.  No voices.  I went almost immediately to bed.  All I could think of was “Thank God I don’t have to do anything until Monday.”  If anyone — the President, even — called, I would just say, listen, it’ll have to be Tuesday.  I’m booked this weekend and on Monday I have a doctor’s appointment.

All I can think of is I will sit as still as a statue in this amazingly comfortable memory foam bed, against this astonishingly soothing body-sized infrared heating pad and not move anything for the duration.  (Of course a thousand interruptions occur: I forgot the damn phone.  I get up.  Then I get comfortable again.  Now I forgot the damn cell phone.  Same routine.  Then I realize the remote for the T.V. is across the room.  Same deal.  What else?  What else?  I try to make it perfect.  This is my command module for the night.  I don’t intend to move again until it is absolutely necessary.)