Tag Archives: chronic pain

The Labor of…

Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability.  This is a space to share experiences.

Sleep.

My relationship with sleep has changed dramatically throughout my life as I have grown and changed.  I am told that I was one of those babies that slept so soundly that my mother could vacuum under my crib during nap time and that even a diaper change didn’t phase me.  Later as a toddler I would protest nap time only to succumb to two solid hours of heavy, sweaty sleep.  My middle childhood years were plagued with chronic bed wetting, which my mother didn’t totally understand at the time (she would make a scene of putting cloth diapers on me in front of the family at eight years old, or showing my wet sheets off to anyone who would see them) until they discovered that I was both a deep sleeper and had a tiny bladder that didn’t keep up with the rest of my body’s accelerated growth.  I also had frequent kidney infections which exacerbated the problem.  In High School I crawled through with an average of five hours a night between working as many hours as child labor laws permitted on top of track and band practice with AP classes and boyfriend who somehow managed to squeeze in there.

College was my first experience with insomnia.  I am pretty sure it was related to my OCD and subsequent depression, but I can’t be sure.  I would go for days on very few hours of sleep, and after a couple of weeks I would crash and not be able to stay awake at all.  I eventually scheduled all of my classes on Tuesdays and Thursdays so that I could work from sun up to sun down and beyond the other five days while still participating in college marching band (Go EMU!), and still managed to perfect a beer purification system out of my liver.  Some how sleep was something I was able to live without for extended periods of time.

Sleeping positions changed as well.  I was a stomach sleeper for as long as I could remember until I got pregnant at 21, and even then I only gave that up when it became physically impossible.  At that point I begrudgingly gave in to the side sleeping that was all my doctor could rant about.  I had to use around five pillows in addition to the ones under my head just to get comfortable on my side.

Sleep was something I took for granted.  I loved sleeping.  I hated that I having to admit that I needed it.

Now, I dread it.

Sleep has changed again.  I have to consider every tiny detail of sleep, from the time and amount to the bedclothes and the temperature.

I have to get just the right amount.  I can’t sleep too little or I will have no energy at all the next day and my body will hurt intolerably to make up for the energy I didn’t restore.  If I sleep too much I can’t adjust and I will fall asleep if I sit still long enough.  I have to try to get to sleep at the same time every night, weekday and weekend.  We don’t have the luxury of “school day” or “not school day”.  We still have to adhere to relative bed times on non-school days to keep my body on a schedule.  Not being tired can not be an excuse, and that melatonin supplement pill becomes a dear friend, something that does not interact with my meds, but helps me fall gently asleep.

The environment has to be just right.  Too much noise will distract or frustrate me.  If I am awake or anxious it keeps my brain active and stop me from relaxing.  If it is too quiet the silence is too loud (plus, I have tinnitus, so the ringing gets a little intense), so we have an iPod with sleep music to play quietly (it has ocean sounds under music!).  The Guy is a cuddly sleeper, and he is very conscious of the possibility that he could hurt me while we sleep.  He worries that he will also make me too warm, and sometimes I worry that he doesn’t sleep well because of this (although, in truth, the only being on the planet that could sleep easier is a newborn puppy).  He will run a fan or the AC if he thinks that he is kicking off too much heat, but as soon as he thinks it is too cold he shuts it off.

The mattress that came with our beautifully furnished ville in Seoul (we could only bring so much weight of our belongings to Korea) was far too hard for me to sleep on and caused me so much pain that I would cry and could never find a comfortable way to lie, so we had to put a memory foam topper for it, which isn’t as good as the memory foam mattress we had to put in long-term storage in California, but it helps immensely.  The pillows have to be just right.  One isn’t enough for my neck support, but two is too many, so we had to get a special cervical pillow made from foam to support my head and neck just right, otherwise I would wake up with a worse headache than I already have almost daily.  Since being pregnant I am unable to sleep any way but on my side, and I have had to learn how to do this without my limbs touching each other, because the weight of them is too much to bear.

The bedclothes have to be right.  Soft enough and not heavy, because sometimes the weight on my legs can cause me to cry from the pressure.  If they are too thin I get too cold, and extreme temperatures one way or the other exacerbates any existing pain.  This goes for all the blankets we use.  We also have to make sure that they are tucked in well (this is where my boot camp education pays off!) so that they don’t come undone and wind around my limbs which will also cause me to awaken in agony, but not too tightly so that I can move around freely so my joint don’t stiffen.  The tiniest things that would maybe bother someone else, cause them to shift in their sleep, will jolt me wide awake crying out in pain.  This ties in with nightclothes, too, because I have to make the same decisions.  I can’t have things that bunch up around my legs, but I have to have enough layers to keep me warm, and socks that are thick enough but that don’t have restricting elastic.  It’s a razor thin edge.

Any little misstep one way or the other throws a sprocket in the works and that can mean the difference between a tolerable pain/adequate energy day and a miserable one.  It can mean the difference between a day where I can accomplish a few tasks and maybe have time for a brief walk or a day with my feet propped up carefully.  All of this work has done nothing for my relationship with sleep.  I still love actually sleeping, but hate admitting that I need it.  Now, however, I hate that I need it so badly, and that my body will take it whether I am willing or not, but that even if I do need it sometimes it will turn upon itself to disrupt what I have worked so carefully to craft.  Sleep is no longer indulgent or relaxing or restful.  Sleeping has become a laborious effort.

Yes, it DOES make a difference

(Cross-posted at three rivers fog.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.