Tag Archives: things I took for granted

The Labor of…

bodies, life changes, Uncategorized, , , ,

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.

Dressing.

I was never, and am not now a fashionista by any stretch of the imagination or definition of the word.  I have had a wary and ever changing relationship with clothes throughout my life.  I have had phases of my life where I have loved them, like, in college, when various eating disorders whittled me down to a size where everything fit (in a manner of speaking) and I really didn’t have to think about it.  If I liked something I saw I bought it and that was that.  When I woke up I rolled out of bed and wore whatever I grabbed, whether it was going braless in a sweatshirt to my 0750 class, a work uniform I passed out in, something cute I had just picked up last week, or my favorite Guinness t-shirt, which has survived every phase and is hanging on my drying rack right now.  I didn’t have to think or care about any of it.  Hell, I didn’t even do laundry a lot of the time…I just bought new underwear and work shirts if I needed them.

I had phases where I hated clothes, for instance, when I was pregnant, and not one damned thing ever fit or was comfortable.  Maternity clothes are a cruel joke, and those jeans with the stretchy thing in the front are some deamon’s plaything, if you ask me, although no one did.  I did, however, find great amusement in maternity underwear, though I seldom actually used it (I preferred my non-maternity duds), but I digress…  The colors, the cuts, the materials, everything was wrong…and in the end I had one pair of pants and a pair of blue jean overalls that fit and I survived in those.  Somehow I escaped the whole experience with a great Kid and a few stretch marks that I would show you if you asked, but ask me about maternity pantyhose…and I will ramble on for about twenty minutes about how they are made of pure evil.  Did I mention that I hated being pregnant?

I had a phase for about four years where clothes mattered dearly, as in, the creases and cut and hems all had to be perfect, and I took immense pride in my appearance and great personal pains to maintain it.  I call that my Military phase, because it was, literally.  The difference between a Good Sailor and a Hot Shit Sailor who got noticed was hir uniform, and I had mine down, all six standard issue Navy uniforms (this was before the new roll out of NWUs).  I was too poor to afford the dry cleaning that all my peers used and it worked to my advantage.  I spent great swathes of time carefully creasing my shirts and trousers and steaming my skirts.  I hand sewed my own rank patches on the sleeves because I trusted my work, and soon my friends were asking me to do the same.  My gig-lines were perfect and my boots and dress shoes mirror shined every wear.  I kept my combination cover in the box to keep it clean and well shaped and kept a spare dome for it in my glove box wrapped in plastic just in case (along w/ a neckerchief, and a shoe shine kit).  I had nail clippers in my purse for stray threads and a sewing kit for loose buttons.  Since most of my male superiors didn’t know female uniform and hair standards I made it my pet project, and I had a reputation at my “A” school for knowing my shit come inspection time.  My massively thick hair was always secured well withing regulations so that at any time any female sailor could see my example, and the “kids” fresh from boot were sent my way for guidance.

That thing, I held dearly until my body turned on m, and my health made it impossible for me to maintain that.  As the pain grew I was unable to maintain my physical standards, and my uniform standards became more difficult to keep up with.

Now, dressing is a laborious effort, but for an entirely different reason.  Practicality demands that I think about each and every garment that touches my person.  Is this cut going to pull on my shoulders and give my neck a strain and trigger a migraine?  Is this sports bra going to do the same?  If I go without one will it hurt my back too much?  I have to examine the seams along the toes of my socks to determine if I should wear them inside out, or if it is OK to wear them the “right way”, so that the seam doesn’t hurt my toes (a trick I learned from my diabetic grandfather).  I have to consider the weight of pants on my shins for high pain days, and the tightness of undergarments around my joints.  Even my wedding bands sometimes have to be set aside when my fingers are hurting.  My feet have always been wide, but even the widest shoes will still rub my feet raw on longer walks which makes buying shoes difficult (and sometimes expensive), since my beloved Crocs and Birkenstocks aren’t always practical for all weather.

Fabric is a concern as well.  I tend to break out in rashes at odd times, and for no medical reason we can determine, so I have to make sure that the fabric isn’t harsh on my skin today, and sometimes I have to change my clothes two or three times before I figure out what I can tolerate.  Oh, yeah, and did I mention how many spoons it takes to get dressed just once?  Sometimes getting dressed for public consumption means that my only activity for the day was getting cleaned up and dressed for said occasion.  Sometimes that means that I might have to choose between the shower or getting dressed at all.

How I wash the clothes matters.  The detergent and fabric softer need to be gentle, and at any time my skin will decide it doesn’t like the one I am using, again, for no medical reason we can find.  I have circulated through as many “free and clear” as I can find, hitting all the “natual” ones in the way.

Getting dressed has moved beyond practical for me.  The formerly simple act of covering my body somehow became a great labor, one more thing to take my time and my spoons.  Not exactly a fun thing to admit for the fashionably inept, who would rather just pull on the first thing she grabs, and who never really understood why “you can’t wear those shoes to the bar” *shurgs*.

The Labor of…

life changes, , , , ,

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.