Sunday, December 14, 2008

Warning: Evil Amount of Venting

I don't normally write a post just to vent--or at least that's not my intention when I start--but this week has been so hard I just need to let it all out. This post will NOT be upbeat, I will NOT be focused on looking on the bright side, it will NOT contain any major life lessons, and it will NOT be inspirational. You've been warned.

That being said...

I had a really hard week this week. Three times the pain climbed unimaginably, meaning that even with the previous day's experiences (and therefore the capacity to imagine about 150% of that pain), I could not have imagined the pain I was in before I was in it. This means that on Friday afternoon, I was in nearly six times as much pain as I could have imagined Monday afternoon. I collapsed five times this week (bit excessive, even for me), spent all afternoon and evening, every afternoon and evening, lying in bed or sitting on my bed, missed a house activity last night because I was so exhausted, and had to cancel my plans for this morning so I coul dbe feeling good enough to clean my room later.

This whole week has just been a series of unfortunate events. Last weekend was my emergency-run-to-Target weekend...and I was also trying to wean myself off my medication...and I also decided to vacuum my room because I was feeling so good. Well, fine, except feeling good is temporary, and by Tuesday morning I felt awful (or at least I thought I felt awful). Then we had a fire drill. Wednesday morning, we had a lockdown drill; I was in the gym and went down the stairs because I was taking the drill seriously and thought the elevator would be too slow. That night we had another lockdown drill.

On Friday, I was actually doing OK, or at least OK compared to where I thought I was going to be. Then "Sasha" kicked me in the foot. It was completely accidental, she was ridiculously apologetic, and I was not angry with her; it honestly never even entered my head to be angry with her. But she had connected solidly where the middle of my arch would be if I had arches, on my bad foot. (No, I don't really have a good foot, but one is worse than the other.) By the end of that class, I was in more pain than I knew it was possible to be in.

I started walking home, and managed to get down the hall, down the elevator, down the hall, out the door, and about ten steps down the path. Then I collapsed. I stood up, walked down the path, and called to "Margaret" to come walk with me. We had just started walking when I collapsed again. She had been on the phone with her brother; she hung up the phone, turned to me, and said, "I have an idea. Let's go home." She picked me up and put me on her back and carried me home: or rather, she carried me, my rollator, both backpacks and both laptops home. I think it totals about 200 pounds.

When we got back to my room, I couldn't hold in the pain any longer and I started screaming and crying hysterically. "Margaret" sat on my bed with me and held me until I quieted down. Then I started getting ready for Shabbat; we agreed that I would not go to services, and "Margaret" would carry me to dinner when the time came.

I did manage to make it up to candle-lighting in the Dining Hall. Afterward, "Margaret" said to me, "We're taking you back," and picked me up and carried me to my room. I had intended to read, but I must have dozed off, because the next thing I knew "Margaret" was standing in my doorway saying, "So you DID go to sleep..." and she picked me up and carried me to dinner.

By the middle of dinner, the pain had decreased, but I was completely enervated and needed to go back to my room. "Margaret" lifted me up and put me on her back and carried me out. It was cold outside; ordinarily that's not cause for panic but that night it was too much on top of everything else. I spent the who ewalk back whining, "I'm cold!" to which "Margaret" responded, "Just hold on tight to me."

When we got back to my room, "Margaret" held me for a while more (I give her major credit for this because she neither likes, nor understands my need for, physical affection), then helped me get ready for bed, carrying me to the bathroom and suchlike. I didn't actually fall asleep then; in fact, an hour later I got up and stayed up for about two and a half hours.

I think today will be a bit better than Friday, maybe like Wednesday or Thursday. Still, the whole last week has jus tbeen really scary, and I hate living this way!

Thursday, December 11, 2008

Children of Pain

For lack of anything current to post tonight, I'm posting an essay I wrote over the summer.

Children of Pain
On the outside, we look just like you. We laugh and smile, go to school, and form and maintain friendships. We are passionate about our hobbies, which, like yours, are rich and varied.

But there is something very wrong—haunting almost—about our normality. Our laughter is quick and almost too hearty, as if we must seize opportunities to laugh because there are never enough of them. Our activities are carefully rationed: at the school dance, we sit to the side and watch. Or we dance one dance and return to our seat, regretting every step we just took. Our faces are white and drawn, cheekbones stark beneath dark, hollow eyes. It is clear that something is not right.

People often assume that this is not real, or that we’re exaggerating it; that it is impossible to have problems like this at our age; that we “just want attention.” None of us has any idea what this means. Every child wants attention; who could fake deep pain? How many of us do you think are headed for Broadway, anyway?

Truth be told, we are some of the best actors you will ever meet. But not because we can fake real pain; our talent lies in disguising it. You never hear our animalistic whimpers or tears of despair. Our destructive, screaming rages happen in secret, behind closed doors. If we must scream or cry in public, we rush for the bathroom. When we come out, the world sees a fresh face and a smile—a smile we have carefully calculated and pasted to our faces to mask our terror.

The endless darkness of pain and sleep eventually gets to us. Appearances falter; weakness shows through. Do not mock us or hold it against us. We’re trying. Just help us, please, help us!

Wednesday, December 10, 2008

(Because I'm Into the Whole "Two-Posts-in-One-Day" Thing)

This is a post about isolation.

Tonight I was griping to "Nina" (she has great shoulders for crying on), and I said, "I get up in the morning, go to school, go back to bed, eat dinner, do my homework, go back to bed, go to sleep. My life consists of school, bed, homework, and sleep."

"Nina" responded, "That's pretty much my life too."

To which I pointed out, "But that's not what my life would be if I had more energy. You can go out with your friends for half an hour in the evening if you have the time. You don't worry about making it to the dining hall for dinner. You don't wake up in the morning wondering how many times you're going to fall that day...and it's not if; it's how many times."

I don't always feel this bad. But when I do, it's lonely.

(As always, comments from readers are appreciated.)

"I'm gonna stop looking back, and start moving on, and learn how to face my fears..."...because it's not like I have any choice!

[First part of the title from a song by Rascal Flatts]

http://www.youtube.com/watch?v=S1Qn5rus4Gg&feature=channel_page

[The link is to a forgrace.org PSA about RSD and early intervention. Watch it. It's moving.]

Now for the actual blog entry:

I don't usually like the whole chronological-order-summary-of-my-day type of blog entry, preferring to just let my thoughts ramble. Today, however, was so downright bizarre that I have to summarize it because it cannot be explained.

I got out of bed at 6:45 this morning. As soon as I put my feet on the floor, I could tell it was going to be a really bad day. As I continued on with my morning routine, my worst fears were confirmed when I felt my feet start burning before I even left the dorm.

Then, in first period class, we had a lockdown drill. I was joking yesterday when I said I thought campus security planned drills to coincide with my worst days...now I'm convinced they have superpowers. Normally lockdown drills are no big deal; I crawl to the corner as everyone else runs there, sit and wait it out. Today, however, I was in the athletic center, and I had to go all the way down the stairs. This involves picking up my rollator, balancing it on my shoulder, and leaning heavily on the bannister. It didn't hurt as much as it should have...not at that moment...

By the time I made it to lunch, I was in more pain than I had ever been in before. My feet were burning in a wet way, as if they were melting and sweating too, or as if I were stepping on lava. After lunch, I started back to school with "Margaret" and "Jan". "Margaret" was in a hurry to get back, and I kept stopping to rest. I told "Margaret", "You won't have time to finish your homework if you walk with me."

"You gonna take half an hour to get back?"

"Probably."

"Maragret" turned to"Jan", handed her her laptop, and said, "Hold this." Then she picked me up on her back, wheeled my rollator over to "Jan", and said, "Hold this too." And then "Margaret" carried me back to the classroom building.

All I wanted when I got back was to lie down, so I spent fifteen minutes lying on a bench outside my next class. Five minutes before class, I started getting up. I had gotten as far as kneeling on the floor to put on my backpack when "Lucy" came by, saw me on the floor, and asked if I needed help. I think I muttered something, but it wasn't anything coherent, so she went and got "John" out of his classroom. He came over and said something, to which I didn't quite manage to answer anything. So he said, "What happened here? Why aren't you speaking?"

I managed to respond, "I...hear...you....I...can...process...you....But...I...cannot...respond...to...you."

"OK, well, you have to go to class."

"That's what I'm doing! I'm trying to go to class!"

So "John" went back to class, and I crawled into my next class. When I saw the teacher, I said, "I'm doing the best I can. I know it looks pathetic, but I'm trying."

I managed OK through that class and the next class, and asked "Lucy" to walk me back fom school because I didn't want to be alone. She did, and now I'm lying on my bed where I'll be for the next hour at least.

I do try not to lean on my friends too much with this. Today I leaned a lot on "John", "Jan", "Margaret", "Lucy", "Nina", and "Maya"; I figure leaning a lot on all six of them is better than leaning unimaginably on any one of them.

My life is depressing right now.

Tuesday, December 9, 2008

Stuck

OK, so I am stuck in the house for the evening because I feel too horrible to walk. I made popcorn for dinner, and I will sit here and eat it and try to have fun. I need to take som etime to do my homework, but other than that, I can read, color, surfthe internet, possibly knit...I have half an hour built in to call my mom...I have no reason to feel sorry for myself.

And yet on some level, I do feel sorry for myself. I hate not having control over my life. I'm a social perosn; I was looking forward to eating dinner with friends tonight. I had plans for this evening. Sure they wee just plans to sit around knitting and hang out with friends later, and eat dinner in the dining hall, but they were plans just the same and now I can't keep to them.

And I felt awful this afternoon...it's starting to ebb now but only because I'm not moving. I can't tell you whether or not I've ever felt this bad before (I'm starting to lose track), but it was pretty darn awful!

Oh, also, to clear up a misconception expressed by a couple of friends, I am not getting steadily worse every day. Each bad day is worse than th elast, but sometimes I do still have better days in between.

Fire Drills

I'm starting to think there's a plot against me, that campus security plans fire drills when they know I'm feeling bad.

OK, not really; I'm not that paranoid. It does seem to me, however, that fire drills dependably happen on my worst day of any given week.

We had a fire drill this morning. I had just registered how horrible I was feeling about five minutes before that (just getting to the mental "Oooohhhh owch this hurts" phase), when the fire alarm went off. Fire alarms are disastrous for me. Sound causes vibration; vibration hurts. That particular sound is loud, sudden, and very rough vibration wise. So I jolt into worse pain than I was in before that, and then I have to get up and walk all the way down the hall and out of the building.

And it hurts like Hell.

And I'm just like, "Really? They couldn't have done this yesterday, when I was feeling alright?"

Monday, December 8, 2008

NOT a Superhero...

So apparently I still haven't managed to learn that I am not a superhero, that feeling good does not mean I can go forever, and that accomplishing everything all in one weekend probably isn't really such a good idea.

Every three or four months, I have what I call a "maintenance weekend". I wait until there are three or four essential items I cannot imagine living without, then take a Saturday night and make a run to Target. That same weekend, I try to vacuum my room as well as the usual neatening up, just so I can get all the painful chores out of the way in one weekend.

I am also trying to wean myself off my Lidocaine patches (major pain meds) because Dr. Sherry wants me off them completely by the time I get to Philadelphia. I decided the first step would be to cut them, cold turkey, on the weekends...and of course I had to choose my "maintenance weekend" to start.

This is not awful pain...yet...but it is definitely burning again (I was feeling good this weekend, whence the "superhero" mentality), and rapidly getting worse.

When am I going to learn that at least right now, I have definite limits, and it's better if I stay within them even when I don't feel like I have to?!

Hmm...[not sure what to title this]

OK, so I'm bored,and I'm curious, and this is something I've wanted to do for a while, so here goes.

If you read this blog regularly, and plan on continuing, please comment here and let me know who you are. If you're from school, a name will suffice; if I've never met you in real life, please tell me a little bit about yourself. Don't feel obligated to do this; I'd just loved to see what size group I've reached and who and where they are.

Sunday, December 7, 2008

Guess What?!

Guess what I did today?!

I...VACUUMED!

Yes, that's right, I was feeling good enough to vacuum my whole entire room all by myself! This is the only time so far this year that I have managed that. (My room was also vacuumed once by one of the other girls in my dorm; thanks, "Rifka"!)

I VACUUMED MY ROOM!!! I VACUUMED MY ROOM!!! I VACUUMED MY ROOM!!!

I am so happy that I could manage it, and proud of myself for making myself try. :)

Saturday, December 6, 2008

More Miscellaneanisms

[Miscellaneanism, by the way, is on eof those awesome should-be-words. It's miscellaneous, but as a noun!]

People in chronic pain get very good at waiting. I someitmes feel like I do nothing but wait, from the moment I get up in the morning. I wait for my brain to turn on. I walk very slowly, so I'm constantly waiting to get from here to there. I wait for my friends to notice my pain and offer their help and comfort. I wait for the inevitable, hard-to-answer quesitons I get every day. I wait for my pain to climb, and then I wait for it to fall again. I wait for something I can smile (or hopefully, laugh) at. When sitting voluntarily, I wait until I have to get up; when sitting involuntarily, I wait until I'm able to get up. If I forget how to walk or breathe, I wait for my body to remember how to function again. I wait for the day to end so I can crawl back into bed. My days are overshadowed with waiting for my current doctor to respond to my current question or call with news on my current treatment.

I always post about feeling bad a day or two after I start feeling better. I just can't make words when I'm feeling bad, but I need to write about it.

Oh: conversation with "John" from the other day when I forgot how to walk:

“Come on, Sarah. Pick a chair. Which chair?”
“I can’t. You don’t understand. I can’t move!”
“Alright then, do you want me to bring a chair over here and wheel you over?”
[very small shrug]
[pause]
“Well, I’m going to do that, because I think that would be best.”
[chair arrives]
[very long three minutes in which I manage about two steps a minute]
[frozen again two steps from chair]
“Sit down, Sarah.”
“I’m trying!”
“But…you aren’t going anywhere.”
“I know!”
“Well, when you sit down, I’ll wheel you over.”

Also: Why I hate coaches:

“Sarah, you gotta start changing out and doing some stuff, kiddo.”
“I can’t.”
“You can do upper body stuff, yes you can.”
“Not today, I can’t, not feeling like this. I would if I could.”
“…”
“You have no idea how bad I feel.”
“There’s other people that feel bad too.”
“NOT LIKE THIS.”
“If you’re gonna argue with me, you need to see Ms. "Smith" [school counselor].”
“I already do, every week.”“OK, then I’ll send her an email. And this is the last time you raise your voice to me, you understand?”

The Cruelest Teacher

People often compliment me on qualities that I know were created and/or strengthened in me through pain. I am never quite sure how to react. I certainly enjoy being complimented (who doesn't?), but I never have anyhting to say in response. Because I feel like it, in this post I will list what I have learned the hard way, why I had to learn it, and possibly how I feel about it.

1. Patience: People are often incredulou sthat I can sit in one place for four or five hours, stay in the same house for a week, or watch my flight get delayed for two hours without going totally stir crazy. But if you have to sit in one place for hours, you learn not to mind it. I learned early on that fidgeting doesn't help anything and in fact usually results in me hurting myself. It is far easier simply to retreat into my own imagination and wait for time to pass.

2. Focus: I can shut off 80 percent of my thoughts and focus all my brain power on the remaining 20 percent at will. Studying takes me less time than it takes other people because of this ability to "hyperfocu. I achieve higher levels of concentration while praying by shutting off distracting thoughts. I can memorize songs very quickly just by sitting down and focusing. I'm pretty sure this "hyperfocusing" is a survival skill. Pain is extremely difficult to deal with if one cannot learn to focus off it.

3. Self-acceptance: It's hard to watch yourself walk slower and slower every day, than start using crutches, than move to a rollator. It's harder still to feel yourself losing your powers of memory and thought as you operate in a fog, and it's even harder to accept that you regularly forget how to walk, talk, or breathe. But hating yourself because you're not the person you used to be only serves to make you more stressed and tired, which exacerbates the slowness etc. It is necessart to be gentle, to tell yourself, "Come on. One more step. You can do it. Good girl," not, "You idiot! You walked this yesterday, so get moving!"
A person must work in partnership with his or her body. When your body says it's had enough of something, you stop. Period. You'll be healthier and happier that way. If my body says, "I can walk without the rollator, and I can clamber over things, and I can go to the gym and hang out," I say, "OK, great! Let's go!" and we do. If my body says, ""I need to sit down, on the cold wet ground, right this minute, and I'm going to be stuck there for the next ten minutes," I sit down and wait out the ten minutes: right there, on the cold wet ground.

4. Living in the Moment: How many of us live our lives regretting the past and/or worrying about the future? I certainly used to. Pain has taught me that that is pointless. When you're feeling good, it helps nothing to worry about when things will be bad again; nor is it productive to replay feeling bad. "I felt bad yesterday; I'll feel bad tomorrow; but today I'm feeling good" is reason enough to rejoice and throw oneself into living.

If I were not going to get better, these lessons would not compensate and I would still feel as though I were missing out on a lot. But now that I know I can be cured, I'm glad for the opportunity to have learned these lessons.

Thursday, December 4, 2008

You Know You Have RND (/RSD/CRPS/Fibromyalgia) When...

So I was reading a generic Invisible Disease list of this type on my favorite website, butyoudontlooksick.com. Most of it didn't apply to me, so I decided to write my own.

1. Paralysis, for about five minutes, is a normal occurence. You don't even get annoyed when your body stops working, and you wonder why everyone's looking at you funny.

2. Your "good" days involve more pain than most of your friends have ever felt in their lives.

3. You have named or anthropomorphized your mobility aid, because your constant companion clearly has a mind of its own.

4. You answer "How are you?" from strangers EXACTLY the same way every time...in fact, you have a memorized formula for answering this question.

5. Your coach "suggests" that you see the school counselor. (I see her every week anyway, but I hate coaches...)

6. Your friends don't fin dit unusual at all for you to grimace, whimper, and collapse, then when you finally get up, spend the next fifteen minutes shaking.

7. Even though you're barely in pain when you wake up in the morning, there's "barely" and "barely" and you can tell, before you put your feet on the ground, what kind of day it's going to be.

8. At one time or another, you have forgotten any of the following: how to walk, how to breathe, how to use a tissue, how to get ready for bed. (Actually, I forget that last one and have to take myself through the steps again almost every night.)

9. Getting cured two months from now is meaningless, because "the future" means crawling into bed tonight.

10. You're going to go make a list of your own now!

Wednesday, December 3, 2008

Because Blogging when I Should be Doing Homework is *Totally* Acceptable...

Note that "Should be Doing Homework" in the title. I should be doing homework. I really, really should. All I've done so far is finish my Chanson de Geste (epic poem in the style of the Old French) for English class, review for my Arabic quiz tomorrow, and finish up an algebra worksheet. I still have chemistry problems, two Hebrew worksheets, and studying for my history quiz on Friday.

So I should be doing homework, but I can't. I am just burned out, "fizzled" if you will. Never in my life did I imagine anything could hurt like I was today. Purely unbelievable...a nightmare of an existence...for hours and hours and hours, longer than usual. I'm also exhausted because I got to bed late last night...because I was too tired to move for half an hour after I decided I wanted to go to bed. Notice the irony here?

And, of course, the fire alarms in my dorm and the dorm next door had to choose tonight to go off twice...not once, but twice...so we had to vacate the dorm twice.

People who care about me, if you were ever tempted to comment here, tonight is the night. I need you.

Tuesday, December 2, 2008

Reactions to my Rollator, Rambling, and a Photograph

Everybody and their mother, so to speak, were interested in my health today, including people to whom I've barely spoken, who have never asked before. I guess I should have been prepared for this reaction to my rollator, but somehow I thought people would be in their own little worlds more. I did get one heartwarming reaction last night: one of the girls in my dorm saw me and said, "CONGRATULATIONS! High five! Do you like it?" That sums up my feelings exactly, so I was rather thrilled.

Then today I was telling "John" something about it, and happened to call it my "rollator." (I'd never used that word with him before.) He asked, "What did you call it?"

"A rollator."


"Is that rollator like alligator or rollaider as in it aids you?"


*slight confusion* "...R-O-L-L-A-T-O-R."


"Oh, OK, rollator. So, like a funny little gator."


*major laughter such as only "John" can produce* "I never thought of it that way."


I think from now on I will have to call the rollator my "funny little gator".


People were most enthusiastic over the brakes, with reactions ranging from incredulity to joy. I couldn't quite figure out what the big deal was, and finally asked a girl in my English class (she probably won't come up again, but call her "Elaine"):


"What's so great about the brakes?"


"What are they...for?!"


"Well, if you let go of the rollator on any surface that's even slightly sloped, and you don't put the brakes on, it rolls away from you."


"Oh, OK. So...they aren't to slow you down?"


"Umm...no."


I was explaining this syndrome to a girl who's never asked before, and got as far as the first part of the explanation: "Ordinarily, when you step on a tack, it sends a pain signal up to your brain--"


"And that's what you have?"


Umm...*what* is what I have? I have a brain...and I have a pain signal...but something's missing here.


And my all-time favorite rollator related conversation:


"Max": "There's Sarah!...What's this shmagiggy?"


Me: "This is a rollator."


"What does it...do?"


"It's more supportive than my crutches."


"Dave": "Well that was obvious."


The fact that I will one day be better, that there are a finite number of bad days, does not make them any easier to deal with one by one. Earlier today I felt like a cheese grater was being scraped over my feet as they burned, and while it's indescribably wonderful to know I won't have to live the rest of my life that way, fear of the future just never was a big part of my emotions on a bad day. A bad day is, "I hurt like Hell, I feel like crap, I'm exhausted, and I have to make it through the day."


I guess what I'm trying to say is that my "radar" on a bad day only extends enough to plan for the next three hours. If I can't imagine tomorrow, I certainly cannot imagine three months from now.


Oh, and because this blog needs a picture (and I need to go do homework, and this is a nice note to end on), here is a picture of my mother and me after Thanksgiving dinner (censored, as always):