a day in the life

EDS Network CARES has declared May to be EDS Awareness Month.  I haven’t blogged on Ehlers-Danlos Syndrome here for a while, so today you get to see a day in the life of someone who has EDS.

Friday, 6:00 am

"Spoons" by Roger Smith
"Spoons" by Roger Smith

I pull mostly out of sleep and glance at the clock. I have to take my daughter to school early today. I don’t want to get up. My husband slips quietly into the room to wake me — we’ve found that the alarm clock, even on a radio station, even tuned in softly, startles me awake, stressing my body and starting off the day on a bad note — and I turn to face him.  I begin taking inventory. Headache? None. Neck? Stiff, not spasming. Shoulders? Both subluxed. Upper back? Sore, probably to start spasming once I’m vertical. Lower back? Mostly okay, but I can feel the ghost of pain to come. SI joints? I think one is out, but I’m not sure. Hands? Fine now, but they remember how awfully they hurt yesterday. Knees, ankles, feet? We’ll check in on those once I’m upright.  I know I’m going to be low on spoons again today, but I’ve got to make that drive. After that, I’ll re-evaluate.

6:45 am

I’m driving home from the high school, my hands roughly at 9:30/2:30 on the steering wheel. The left side of my neck starts to spasm and cramp.  I move my right hand down to 4:00 and rest my left hand in my lap. I’d planned to go back to bed as soon as I got home, but I’m already too awake. I expect that I’ll need to be horizontal before noon, to take stress off of joints.

When I get home, I consider a shower. Showers are good things, invigorating, relaxing, cleansing… exhausting. Holding my hands up long enough to wash and rinse my hair is incredibly uncomfortable, and it wears me out so that I need a rest of 5 or 10 minutes before I do anything else. I don’t have any appointments or other plans for today, so I’ll skip the shower until later.

I decide to go ahead and start working.  I’m already down 4 hours for this week, and I know I won’t be able to put in a full workday today. I also have -10 hours of vacation; that’s right, I owe 10 hours to my employer.  I earn 7-point-something for each two-week pay period, so if I want to bring it back into the black, I’m going to have to just not get paid for some of these hours my body needs. I think again about disability leave, and make a mental note to call the disability lawyer to make a first appointment.

8:00 am

"Little Computer Person" by quannum
"Little Computer Person" by quannum

Because I’m only 4’9″ (~145 cm) tall, I qualify as a Little Person. My body parts seem to be in proportion to each other, which is a good thing — at least I can attempt to wear “normal” clothes! — but few things in the world are made for someone this height, outside of the fourth grade.  My desk is actually a height-adjustable student work desk from a school furniture catalog.  Height-adjustable desks for “normal” adults, that can be adjusted low enough for my ergonomic needs, are pretty pricey.  I sit in the ErgoChair, which is specially designed for Little People; it cost me $800 — and I paid for it myself, because I want to keep it! — because none of the commercially-available office chairs adjusted low enough to the floor to keep my ankles, knees, and hips all at that perfect 90-degree angle.

I use an ergonomic keyboard to help hand strain, and I use a good touchpad (not like the crappy ones that come on a laptop computer) to prevent the worst strain to arm, shoulder, neck, and back.  I’ve been at my desk for an hour now, and I can feel it.  Even with desk, chair, and monitor adjusted just right for me, even with input devices within reach, even sitting with correct posture — even with all of these, I’m already hurting.  I have muscle spasms across my neck, upper back (from the bottom of my neck to the bottom of my shoulder blades), middle back (from the bottom of my shoulder blades to the top of the small of the back), and lower back (from the small of my back down to the tailbone).  My knees and ankles ache.  My hands are starting to hurt.  Yesterday, they felt so awful, I expected to look down and see them swollen and clumsy, like baseball gloves. At the worst times, I would cradle them in my lap or warm them in my underarms, biting back sobs.

9:30 am

"day 67_two cold feet, one warm slipper" by anitacanita
"day 67_two cold feet, one warm slipper" by anitacanita

I feel so hot! My body doesn’t tolerate feeling hot, so this makes me feel a little light-headed and a little nauseated.  I pull the hems of my pants up to my knees, splash some water on my face, and turn on my fan.  Ten minutes later, it still feels hot inside my head and torso, but now my feet are freezing.  Yesterday, I just couldn’t get warm all day long.  The thermostat has remained set to the same temperature for weeks now.  This temperature stuff is a dysautonomia, a glitch in the autonomic nervous system.  The autonomic nervous system takes care of all the body processes that we don’t have to think about: it regulates breathing, heartbeat, digestion, body temperature, equilibrium.  For some (not yet fully understood) reason, EDS and dysautonomia are highly correlated.  Normally my slippers stay under my desk, but yesterday I accidentally left them on when we went out on an errand; when we returned, body memory took over and slipped them off right where my shoes already live.  I consider the 20-foot trek for the slippers, but decide against it, wrapping my feet around each other in an attempt to warm them.

Fatigue is taking over, too.  I’ve noticed that the cognitive effects are almost measurable. I am hooked on the online games at DKM Games, and their Shisen game is a great indicator for me.  When I’m fairly fresh, I can find the tiles easily.  When fatigue is winning, though, I can review the board row by row, column by column, in chunks, or by unfocusing a little to let the matches pop out… and I just can’t find what I want.  If I had (or wanted to write) a utility to measure this, I’m sure it would be revealing.

11:30 am

I’m hungry. I got an early start on the day, and skipped my mid-morning snack.  My digestive tract moves very slowly, so I have to eat smaller portions more often; I can get the weaky-shakies (as my mom calls them), too, so I have to make sure I’m getting protein.  I’m afraid to stand up, though.  My entire back is on fire, and I know that being fully upright is going to be murder on my lower back.

"Pain Scale for Children" by Wayan Vota
"Pain Scale for Children" by Wayan Vota

In pain inventories, we’re often asked to describe our pain.  Is it sharp, stabbing?  Is it dull, aching?  Is it soreness, like after a good workout?  Is it a burning pain?  I’ve noticed that, at least for myself, these suggestions are incomplete.  I regularly experience pain that feels more like pulling and tearing, like a joint is being pulled out of place.  Sometimes, when I have my arms at my sides, my shoulder will feel like a weight is attached to my hand, pulling the arm out of the socket.  Right now, my back feels like there is a person on each side of me, stretching the muscles until they either come off of the spinal column or pop the vertebrae themselves out of place.  Along with that is some burning, aching, soreness; it can be sharp at times, and definitely feels like muscle spasm.  But the primary character of the pain is pulling, tearing.  I still haven’t figured out how to describe this to a doctor without sounding like a drama queen.  At least my physical therapist seems to understand.

12:05 pm

I toast a slice of wheat bread and slather peanut butter on it.  With a glass of lemonade, it assuages the hunger. I really want to go to bed, but I want to put in as many work hours as I can today. I decide to try to stick it out another hour.

I drink some lemonade and set down the glass.  Looking at my monitor, I realize that the document looks completely unfamiliar to me. As I always do when my brain refuses to work properly, I give my head a little shake.  It doesn’t help the brain. It does exacerbate the muscle spasms in my neck. Recollection fades into my mind, and I know what the document is. I’m not sure what I’ve done on it today and what more I need to do. I need to page up and down a few pages to refresh my memory. A five-minute break to toast some bread feels pretty much the same as sitting down at my desk on a Monday morning, last week’s work faded into the background.  I don’t like this feeling.  When your employer wouldn’t care if you were a brain in a jar, so long as you could interact with your computer, it’s more than a bit scary for the brain not to work properly.

12:15 pm

An email comes into my inbox.  It’s one that I get a courtesy copy of, but I don’t need this one for anything.  I delete it.  I click over to my personal email, read three new ones.  One was a follower on a social network, so I check my feed over there and see if there’s anything I need to respond to. There are some new items in the chronic illness support group, so I make a couple replies. I’m still in my browser, so I start a game of Shisen. I don’t even remember that I’m sitting here at my desk to work.

12:25 pm

My Shisen game over, I sternly remind myself what I’m supposed to be doing.  I close all the tabs of my browser that aren’t work-related, and bring the document back up again.  Uh oh… what was I working on?  It takes me a few more minutes to refresh myself and get into it again.

"day 159" by sarahluv
"day 159" by sarahluv

My hands hurt. My elbows hurt. My knees and ankles and hips hurt. Every inch of my back hurts. The knuckles in my toes ache.  You didn’t know you had toe-knuckles?  Well, you do.  I know we have them, because mine hurt. It’s funny the body parts you become aware of when all of your joints are hypermobile.  I try stretching my feet and toes to relieve the tension.  I remember how surprised my father was to see me lift my big toe up at a 90-degree angle to the others, without moving anything but the big toe.  “What, you mean you can’t do that?”  “NO!”  “Huh.”

I know I need to lie down, but I’m trying to make it until 1.  Then maybe I’ll try a rest.

1:20 pm

I’ve actually gotten in about an hour of good, solid work.  This is the most progress I’ve made in days! I check the document in, massage my hands, and look at the clock.

Dammit. I have to leave to pick up the kids at school in 40 minutes. That’s not enough time to make it worth my while to lie down. Having to get up from the chair, move to the horizontal surface, lie down, and then get back up again about the time my body starts to relax is just frustrating. Everything knots up again.

"Waiting with good posture" by quinn.anya
"Waiting with good posture" by quinn.anya

So it’s Friday afternoon, and I have 40 minutes in which I don’t really want to start a new task. I click over to email, file some emails that I’ve finished working with, check the clock.  1:25.  I check my personal email, read and file four messages, check the clock.  1:28.  God bless it, but I hurt!  Even my butt cheeks are getting in on the fun! I remind myself of the good posture stuff: shoulders back; boobs lifted up; pelvis tipped slightly backward, as if a string runs from the top of each cheek to the ceiling; eyes straight ahead; spine straight from tailbone to back of head; hands relaxed atop my keyboard; back against the back of my chair; feet on the floor.  Yeah, it still hurts.  And it’s 1:29.

Nothing new on the social network, so I start another game of Shisen. And another.

1:55 pm

Soon enough, my 5-minute reminder pops up, so I set myself away in my instant messaging client and lock the computer.  I take a deep breath in, and stand up from my chair while exhaling.  The cats are watching me closely, hoping that I’ll feed them. They know the sound of the three-finger salute, and when standing up follows it, they know this means DINNER.  “No good, ladies,” I say to them. “You’re a few hours ahead of me.”

"Bride of Frankenstein" by Kaptain Kobold
"Bride of Frankenstein" by Kaptain Kobold

Walking across the room is not fun. I know I look like Frankenstein’s monster, because every muscle from my calves to my shoulders is tightly knotted up. I put on my medic-alert bracelet (Don’t leave home without it!), slip on shoes, and grab my purse and keys. I remember to pick up my Kindle, in case I’m a little early.

I’m so glad to have an e-reader. It is an essential accessibility device for me. I love to read, and was brought to tears of frustration and grief many times by the pain I would feel when I held a book to read.  My mother gave me the Kindle for Christmas, and it has been the best improvement to my quality of life that I’ve experienced in years.  I cannot tell you how grateful I am for it… even when this 10-ounce device feels too heavy for my hands and arms.

2:20 pm

The kids are in the car and we’re heading home. The warmth of the seat against my back feels nice, but driving position makes my hips feel that same pulling/tearing sensation I was thinking about earlier. The worst is short trips around town; when I can put the car in cruise control for long interstate stretches, it doesn’t affect my SI joints, hips, and legs so badly.

“Momma, can we go to Wawa today?” my daughter asks.  I take a deep breath and make an intentional blink.  I won’t let it show on my face, but even a quick side-trip to the convenience store for sodas and sweets feels insurmountable to me and makes me fight to hold back tears and a little sob.

“Not today, sweetpea,” I respond.  “It’s been a really bad pain day for me. We have ice cream sandwiches at home, though.”

2:30 pm

We’re back home again.  The kids are in their rooms getting their homework knocked out so that they can enjoy their weekend.  I’m back at my desk, staring blankly at my screen.  Screw it, I decide, and pull up my timesheet.  I managed to squeeze out 7 hours today, which is pretty spectacular for me, especially on a Friday when I’m exhausted from a full week of work.

"Exhausted" by A Little Coffee with my Cream and Sugar
"Exhausted" by A Little Coffee with my Cream and Sugar

People throw that word exhausted around a lot, but I don’t think they know what it means.  If you have spoons left, you’re not exhausted.  When you’re on your last spoon, though, and you’re trying to decide whether to use it eking out another hour of work or to save it for dinner and TV time with the husband and kids — when this happens, you’re approaching exhaustion.  Exhausted means you have no resources left. No energy, no patience, nothing. You lie down. You rest.  Because that’s all you can do.  I have about a spoon and a half left. It’s time to rest, so that maybe after that dinner, I can get a load of laundry going.

I confirm a wake-up time with my husband, in case I don’t wake on my own by then. I grab a cryo-pack from the freezer and tuck it into its pouch.  And I head to bed.  I lie down, feeling the intense cold on my back, breathing deeply and practicing deep relaxation techniques (or, at least, trying to).  I consider reading, but not very seriously. Within five minutes, I’m asleep.

4:30 pm

My husband tiptoes into the room. I’ve wakened a couple times, shifted the cryo-pack, and fallen right back into oblivion. He lies down next to me, lays a hand on my shoulder, and whispers me awake.  I curl into his arms and snuggle against his warm body.  He apologizes for waking me. He always does, and it’s so sweet.  He strokes my hair, my back, and I gradually rejoin the world of the conscious.

As I stand up — slowly and stiffly — I wish once again that I didn’t keep developing a tolerance to the “good” pain meds. Vicodin, oxycodone, darvocet, and now tramadol: all of them are now useless to me.  All I really have for pain right now is an anti-inflammatory. I have an anti-depressant that helps with pain control, too, but we have yet to achieve a baseline pain level that keeps me functioning for a full workday, much less for things like preparing meals, washing dishes, taking showers, and shaving my legs. I’m still grieving for the loss of the tramadol, and the loss of hope that goes along with it.

Hope really is insidious for someone who lives with chronic pain. We have to remain hopeful, but each time one of our hopes is lost, we grieve one more time. This chronic illness has been a series of grief cycles for me. I grieve when I discover one new thing that is unsafe for me, because it causes injury or it hurts too much or it takes too much energy from me. I grieve when a promising medication or therapy doesn’t work out. I grieve when we have to change plans, to cancel some activity or concert or meeting or visit that had excited me, because there’s no way to predict my spoon count on any future day. I grieve for my career, past its pinnacle though I haven’t even hit 40 years old yet. I grieve for future opportunities that are closed to me now. Sometimes there’s a gap between grief cycles. Sometimes there’s none. Sometimes the damned things overlap. I just try to ride the waves, keep my head above water, and keep moving. I may be moving in the wrong direction, but if I stay in one place, I know the water will eventually wash over me.

5:30 pm

"Happy Sunday dinner" by NoWin
"Happy Sunday dinner" by NoWin

I’m reading my Kindle on the couch. The only thing certain about dinner at this point is that I’m not cooking it. I haven’t had anything since the peanut-butter-toast, and I’m hungry. My husband asks what I’m in the mood for.  I decide not to say “Sleep,” instead shrugging.  He says, “Yeah, me too.”  We throw out some ideas and end up deciding on a nearby pizza and pasta place.

The chairs are too tall for me.  So are the booths.  Like always, my legs swing as if I were still eight years old.  When I hold them still, I get the pulling-out-of-the-socket feeling in my hips.  The world just isn’t made for people like me. I try to decide whether it would have taken less toll on my body to just make something at home, and then decide that such speculation is futile. I eat about half my salad and half my pasta, and get the rest boxed to go home.

7:00 pm

I’m incredibly tired, but not the slightest bit sleepy. So many places hurt that it isn’t even worth taking inventory.  I’m stretched out on the couch, because my body needs to be horizontal.  We watch a DVR-ed episode of something, and then my brain is tired of television.  I pick up my Kindle and escape from the room.  Every so often, my husband shares a tidbit from the show he’s watching or from his online surfing.  I am incredibly cranky, but trying not to take this out on him.  He’s so amazingly sweet and helpful, and I feel like a bottomless pit of drama and need.

9:30 pm

My husband has been yawning for almost an hour now, and in the last 20 minutes he’s dozed off twice.  He needs to go to bed.  Even though I took my nighttime medications at nine, I’m still not the slightest bit sleepy.  I know better than to go to bed when I’m not sleepy; this is a recipe for insomnia.  I accompany my husband to the bedroom and tuck him in.  On return to the living room, I take over the recliner.

11:25 pm

I finish the novel I’ve been reading and look up at the clock.  Holy cow! I didn’t realize it was so late already!  I take a deep breath, close my eyes, and assess my mental state.  Yeah, I’m tired.  I’m also feeling sleepy.  Good!  I slowly stand, turn off the lights, head to the bedroom, and slip into bed. The comfortable words of Compline begin in my mind, and my body relaxes as I embrace the prayer. My brain distracts itself with other things here and there, and when I realize this has happened, I gently call it back to prayer. I remember the Lord’s Prayer, but not much after that. I’m asleep.

Saturday, 1:37 am

I wake, my left shoulder on fire.  I roll over and slip back into sleep.

3:04 am

I wake, my knees, ankles, wrists, and hands aching.  I lie awake for a while.  Is that thunder?  The sound repeats, a little louder. It is. There’s a system moving across us tonight. That would be why everything hurts right now.  I listen to the oncoming thunderstorm, to the rain on the windows and roof, to the retreating rumbles.  In the midst of all this, I fall asleep again.

4:50 am

I wake, look at the clock, close my eyes again.

6:03 am

I wake and look at the clock.  Behind the blinds, the outside looks grey rather than black. I’m not ready to wake up.  I close my eyes.

"Oh. Hello, human" by sr. hedwyg
"Oh. Hello, human" by sr. hedwyg

6:56 am

MEOW!  MEOW!  I start awake and look at the cat.  “What is it, Majesty?” I ask, reaching out to stroke her fur.  She settles onto the bed, leaning into my hand.  After a few minutes, I stop stroking, simply leaving my hand on her side.  She falls asleep.  So do I.

7:12 am

I don’t want to be up yet.  I’m not ready to face the day.  I close my eyes, but my mind is already switched on. My mind thinks about what’s in store this weekend, about the workweek just ended, about long-term plans for the future.  My body drifts in and out of consciousness; I know this only because my husband tells me later that he could hear me snore every now and then.

7:48 am

Realizing I’m not going to sleep any more, I decide to get out of bed.  But that’s a second day, so the story ends here.