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The Mystery of Sleep

  • Posted on July 7, 2014 at 10:00 AM

So, it’s very early Monday morning. I have an hour to decide whether or not I’m even going to try to sleep. It’s around 3 am. I have a meeting at 9 and an appointment at 11:30, which means I have to be up at 8 at the latest, which means if it’s going to be worth it at all I have to be in bed shortly after 4 am.

My mind is still buzzing. I feel the pull of work. But I know I’ll be exhausted by 10 am and I can’t miss my appointment. My meeting might give me the buzz I need to keep going. But I’d been hoping to use this as an opportunity to switch over to a day schedule. Day schedule, schmay schedule, you say…but I like being awake for the boys. The quiet of the night has lost its allure.

I don’t get it. I really don’t. After my surgery, I slept as much as I needed to, more than I thought I possibly could. I continued to sleep well for a few days. When I was able to stay up more, I felt better. Better than I had before the pain that made the surgery necessary. I felt good even.

And then, just like that, I was back to my lack-of-sleep schedule.

Within days, I was back to being tired. Not nearly as tired as I’d been before, but more tired than I should be considering I’m getting more sleep than I was…it’s just during the day. It’s still about two weeks before I see the sleep doctor. I really, really hope he’s got a solution in mind, because I’ve got nothing. I have no idea how to fix this.

A Family Reset

  • Posted on July 2, 2014 at 10:00 AM

A little a while ago Ben brought home a piece of school work that Mark put up on the wall. They’d written statements for him and marked where he should complete them with a long line. “My name is _______,” “I am _____ years old” (which he got wrong), and other things Ben is expected to know. One of the statements was “My mother’s name is ______” and Ben answered “dad.”

Mark is a stay-at-home father. I am a work-at-home mother. While I may share more of the domestic responsibilities than the typical working spouse, Mark has a heavy load to carry to fulfill his daily role (especially during the summers) and he has access to far less support than traditional stay-at-home mothers do. Mark and I both appreciated that Ben recognized that Mark’s role was a bit untraditional.

Now, with me partly out-of-commission, we’re undergoing some changes. I can’t lift more than 15 lbs. without endangering my abdomen. Since I don’t know 15 lbs. versus 10 lbs. or 20 lbs. when I’m lifting it, I may not be the strictest adherent to this rule; however, as a family we try our best to accommodate my recovery needs. But this simple restriction changes a lot.

Since my sleep cycle is so screwed up, I have to make most of the days when I’m awake during the day. I usually do my shopping at night, late at night, when everyone else is asleep. I would go to the grocery store, load up my cart, go through the self-check lane, bag my groceries, load them into the cart, load them into my van, and unload them into the house all by myself. Then, I’d put them away. The boys would wake up to a house full of surprises.

Laundry is a bit different. Sometimes I would do it all myself, but sometimes Mark would lug the heavy hampers downstairs for me. Now, I can’t even carry the baskets of clean clothes upstairs unless I separate a load into smaller baskets and make several trips. Daily chores have become especially exhausting. So, now Mark’s doing all the heavy lifting for this family, both literally and less literally.

I may be the one bringing home the bacon, both literally and figuratively, but his job is harder. I know, because I’ve done it. It’s easier when I can help more, but getting me healthy is a priority, too. Resetting expectations and obligations isn’t easy and the timing isn’t good. Summer is not the time to mix things up. But we’re trying, as a family, to make it work. You can’t reset Mama without it spilling over to the entire family, even if she’s a work-at-home Mama.

A New Kind of Recovery

  • Posted on June 30, 2014 at 10:00 AM

So, last Tuesday I went to the doctor because of severe stomach pain and came out of the hospital without a gall bladder. By that time, I’d nearly made a full recovery from my last flare up of fibromyalgia (the diagnosis will be confirmed or changed later today, I hope), which doesn’t mean “cured” of course, but it does mean I had energy and concentration levels that were similar to what I’d had before my crash.

Now, I’ve spent almost a week recovering from my infection and surgery. I’ve got about five more weeks before my body is fully healed (no more weight restrictions and no more bathing/swimming restrictions), but I suspect I’ll have my energy and concentration levels back up before then. I’m already feeling remarkably better consider I slept all of the first day after my surgery and most of the second. I’ve even put in a few part-days of work and one full one, though only the one. With any luck today will be my second.

Unfortunately, now that I’m well-rested and on the mend, my insomnia is back, as was proven last night. I tried to sleep, but I couldn’t. Then, I took melatonin and a sleeping pill and they sort of worked and sort of didn’t. I’m starting to think my sleep issues are going to be the most difficult to resolve.

Before my surgery, I was beginning to sort out the difference between fibromyalgia pain and arthritis pain. Then, once the gall bladder issue started I had a new kind of pain to factor into the equation. By the time I went to the doctor it was all gall bladder pain all the time. After the surgery, my other pains were muted and I had a rather deep, cutting kind of pain to deal with, but I also had the kickass power of percoset to keep that under control. Now, I’m off that and my abdomen is tolerable and I’m back to feeling my fibromyalgia pain.

It’s been a rocky week. Alex missed his Summer Swim two times in a row. If he goes again at all, it will have to be because Mark or my mother takes him. I’m on a no-swimming, no-baths regimen until after the first week in August. It’s a new kind of recovery. It’s certainly better than having kept my gall bladder, but it’s going to take some getting used to, now that I’m actually awake enough to get used to it.

Not What I Expected – Part 2

  • Posted on June 27, 2014 at 10:00 AM

It was about 10:30 when I walked up to the front desk in the hospital. I’d called Mark from the hospital parking lot and told him that, apparently, it wasn’t my gall bladder and that the doctor had ordered a CAT scan. For some reason, Mark sounded worried about this development, while I felt perfectly calm. I told the front desk lady who I was and she told me I needed to get registered. I waited a moment and was quickly called back to speak with another lady. I went through the usual questions and then yet another lady led me to Radiology.

The radiologist receptionist (one out of three) took my name, I sat down, and then I was handed a bottle of clear liquid that I was told to drink. It was ionic contrast for the CAT scan. I drank it and then had to wait 30 minutes. After fifteen minutes, I asked if I could use the bathroom. The receptionist said, “Sure!” and told me where to go. I went, came back, and five minutes later a technician walked up to me and said she was taking me down to labs. I needed to provide a urine sample for a pregnancy test. I said, “I wish somebody would have told me that! I just went.” Long story short, I tried, I failed, I walked back to Radiology, I was told I’d failed, I was handed a bottle of water, I was led back to the Out Patient Surgery Lab, I succeeded, I walked back to Radiology where I waited to be told definitively that I was not pregnant.

Keep in mind that during this whole ordeal I am at a 9 out of 10 on the pain scale. I have a very unhappy face, though I’m bearing it as well as I can. I keep quiet most of the time, but let out an occasional whimper that I just can’t hold back. I’m getting paler and sweatier and more dazed as the moments pass. And nobody but the other patients seems to notice.

Finally, I get to take the CAT scan. I lay down on this long, thin “bed” with a cushion under my knees and my arms up over my head. The tech puts in an IV so she can inject more contrast into my veins. I hold as still as I can for the scan, which turns out to be still enough. The tech warns me, and she’s right; the contrast feels like warm lead in my veins and makes me feel like I’m urinating with an infection. Afterwards, she tells me that she’s going to leave the IV in, “just in case,” and that I’m to wait in the waiting room for the results.

So, I end up back in the Radiology waiting area, but I can’t sit and wait any longer. I ask if I could have a pager and go walk the grounds. I get the pager, I head off the property, smoke two cigarettes, come back in, go to the bathroom again, and head back to Radiology. The receptionist is on the phone, waving me over, and I point innocently to myself, and she nods fiercely. “Didn’t you get my page,” she hisses as she hands me the phone. I shake my head and she says, “I paged you twice!” I say, “Hello?” into the receiver. A quick glance to the clock tells me I was gone less than fifteen minutes.

It’s my doctor’s nurse on the phone. She tells me that it is in fact my gall bladder, that it’s very inflamed, that I’m to go to such-and-such a building, and that somebody there would show me the way. Looking back on this moment, I could have been freaking out. I could have been extremely anxious and panicky. Instead, I was perfectly calm, if a bit dazed. I follow where I’m led, asking few questions. I chat about the wonder of having a skywalk in Janesville. The little hospital was growing up so it was almost like the Children’s Hospital in Madison.

I’m registered at the new office. I hand over my co-pay. Nobody really told me why I was here and I didn’t really ask. I waited, still very much in pain, for what seemed like a long time. I remember that I was told quite specifically not to eat or drink anything. I think to myself that they already made me drink two whole bottles of liquid. I get caught up in random snatches of music. The time passes without much thought. I’m called into the doctor’s office.

The young lady that calls me back is a doctor’s assistant, or something. She asks questions, she probes my abdomen, and I react a bit more strongly this time, loss of self-control. She explains that my gall bladder is inflamed and probably infected. I’ll need surgery today or tomorrow, but it’s not her call. I might even have to stay overnight. She talks about the risks and the reasons. I nod a lot, I speak a little. She tells me that the doctor is in surgery and that it’s his call and that she doesn’t work with him as much so she’s sorry if it’s not exactly what he tells me. Then, she leaves and I wait some more. The nurse will be in with me shortly. Someone pops her head in and asks about my insurance. I tell her. Then I wait for a while longer. I start getting up. I want to walk around. Sitting hurts more than walking. As I start to walk out, someone comes up to my door and tells me that I need to go back to the front desk of the hospital. She doesn’t tell me why and I don’t ask, though she does say something about, “They’ll probably want some labs.”

I decide to go outside and walk to the hospital that way, so I can have a cigarette. I smoke one and that gets me to the place I need to turn. I consider having another, but think that they might be missing me, so I go in. I tell the receptionist, “I’m back.” It only takes them a moment to figure out who I am and where I need to go. It’s not even in the computer yet – she wrote it down on a piece of scratch paper. She leaves her post to the other lady and leads me back herself. I follow without question.

Looking back, it seems that I must have been in shock or something. I was so dazed and so confused. Yet, at the time I was perfectly calm, perfectly at peace. I find myself back in the Out Patient Surgery Lab area, but instead of sending me to the waiting area, she leads me deep into the warren of little rooms. She consults her piece of paper, and then says, “Here you go.” All I could think to ask was, “I get a room now?” And she says, “Yes, they’ll take good care of you here.”

There’re a lot of ins and outs now. Things move more quickly. A registrar comes in to verify my information and give me a new wrist band. She snips off the one Radiology gave me and sets that aside like a souvenir. Another lady comes in for my vitals. I’m told to get in the gown, but not to put my arms in the sleeves of the robe. I do, and then I call Mark. I tell him I have a room now, but that I still don’t know when I’m having surgery. He takes it fairly well, but he’s clearly much more worried about this than I am. A lady comes in to take my blood, so I offer her the IV. She says she can’t use that. While she’s still there, another lady comes in to do an EKG. They work around each other. I almost feel like I’m there. When they’re done, I try to call my mom. I get her machine. I leave a message, though I have no idea what I said. All I know is that, whether I have surgery today or not, I’m no longer safe to drive. The pain feels far away now, but they haven’t given me anything.

Somebody comes in for me and asks how I’m doing. I say, “Not well.” And she says, “No, you don’t look very well, but we’re going to help with that.” She wheels me back to Radiology. This time I get a chest X-ray. I tell them I’ve already been tested and I’m not pregnant. She says, “I’m sure that hasn’t changed since this morning.” The X-ray technician asks why I’m there and I tell him, quite honestly, that I don’t know, that I’m just doing what they tell me.

He apologizes profusely and tells me that I’m probably having surgery, “Does that sound right?” I said, “Okay.” I think the tech must have reported this “conversation,” because people seem much more aware of just how dazed I am at this point. As I’m coming back, someone from somewhere calls out, “Call your mom!” Before I can do that somebody explains roughly what’s been going on and that I should be ready to go home around 5pm. So I call my mom. We talk. She seems so very worried and it’s very upsetting. She asks me questions that I don’t know how to answer. She’ll be there to pick me up around 5pm, she tells me, and she apologizes for not being there sooner. That seems silly at the time.

The surgeon comes in – it’s the first time I’ve seen him – he explains that my gall bladder is inflamed and that it’s probably infected. He strongly recommends surgery today and that there are risks involved – he explains them. “Do you understand? Do you give your consent for this surgery?” “Oh yes,” I say, “that much I get. It’s just nobody’s told me when it’s happening or what all this other stuff is for.” He says, “It’s happening now,” and he turns and points to the bed they’re getting ready for me. “Oh.”

The anesthesiologist comes in and explains her role. I have to give informed consent to both of them and sign their forms, which I do. By now it’s really sinking in that I’m having surgery, but I’m still perfectly calm. Then, they get me up and on the bed and I’m still conscious as I’m rolled into the surgery room. I see the surgical instruments and wonder to myself why I’m not freaking out, but I’m still perfectly calm. The anesthesiologist tsks over my IV, but uses it to give me the medicine that puts me out. The last thing I remember is her saying, “I’ll put in a proper one once she’s out.” I try to defend the Radiology technician, but I don’t think the words ever come.

I wake up and there’s my mom, worried and waiting. It’s not until I’ve slept more thoroughly than I have in years that it occurs to me why. Looking back on everything that happened that day, from the initial impulse to go to the doctor to my circuitous route to emergency surgery, it occurs to me that I was probably in a lot more danger then I ever realized.

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

~Psalm 23:4

I don’t think I’ve ever quite grasped the meaning of that passage before now.

Not What I Expected – Part 1

  • Posted on June 26, 2014 at 10:00 AM

When I woke up Tuesday, still in pain, I expected something…but this wasn’t it. Have you ever looked back on a day in your life and known God was there?

It started many years ago. During the third trimester of my third pregnancy, I was plagued with “false labor pains.” This didn’t seem at all extraordinary until I needed to be induced in order to deliver my son early, because he wasn’t growing in the womb. I started at a zero. At the time, I didn’t think much of it – being rather worried and in pain – but if I were really having “false labor pains,” then shouldn’t I have been at least a little dilated?

My “false labor pains” became extraordinary when they continued after my son was born and kept coming after my uterus had resumed its normal, contracted position. It was during a severe, three-day bout of this inexplicable pain that my mother took me to the doctor. He tried to dismiss it as a “back strain” due to a recent pregnancy (or three) and my excessive weight. I was curled in on myself, assuming as close to a fetal position as could be obtained in a hard plastic chair, so I was not able to advocate for myself at the time. My mother, not so encumbered, pointed at me and screeched, “She’s crying. She never cries. You’re going to do something!”

So, I was sent down for an X-ray. I tried to lay myself flat for the X-ray, but couldn’t quite do it. The technician just shook his head and said, “She shouldn’t be here. She should be in ultrasound. It’s her gall bladder, not her back.” Turns out he was right. I was given a prescription for oxycodone and a referral to a surgeon. The surgeon explained that I would have a six-week recovery after the surgery during which I could lift no more than 15 lbs. and that I was not to allow any little person climb or lay on my abdomen. That nixed that, and so I stuck to homeopathic treatments (sarsaparilla), recommended by an Internet friend who lived in India, and I was “fine” for years. There were occasional bouts of pain, when stones passed, but the duration was short and the treatments helped. It was manageable.

All of that change last Friday night. A “gall bladder attack” started and it seemed like normal, except that it continued on into Saturday, and then into Sunday. On and off, it continued through Monday. Except, it wasn’t just continuing, the pain was getting worse in little leaps. Tuesday morning, I’d had enough. Things were different now. I expected to go into the doctor, get my prescription for pain medication, get my referral, and schedule surgery for some time later in the week or maybe next week. But that’s not what happened.

I was going to get some sleep, if I could, and call that afternoon, but I couldn’t sleep and I felt a strong need to call right away. I called for my appointment and discovered that my doctor was only in the office during the mornings today (Tuesday). He could see me at 9:45, but he would have been gone if I’d waited. So, I got myself ready and arrived early for my appointment.

I explained what I’d been experiencing to the nurse and then again to the doctor. This facility uses a 0 – 10 pain scale, complete with happy faces and very unhappy faces. To put this in perspective, giving birth usually comes out at an 8 for me, which is fine considering that I get a baby out of the deal. Untreated fibromyalgia, at its worst, is a solid 7; with treatment, it’s a manageable 5 to 6. My broken wrist was my only 9. My previous “gall bladder attacks,” as I called them, were solid 8s – with no baby as a reward. This doctor was the same doctor I’d been seeing since shortly after Ben was born. He’s a good doctor who listens and cares and responds with as little prescribed medication as possible, which is something both Mark and I appreciate. He knew me and knew that I wasn’t prone to exaggeration (at least not during medical appointments) and he knew I would avoid narcotics whenever possible. So, when I told him that my pain was at a 9, he took me seriously.

He had me lay down and he probed my stomach. He stood back a little and had me sit up. He watched while I did so. He looked at me thoughtfully and he responded honestly. He told me that my responses didn’t correspond with a “gall bladder attack,” i.e. it didn’t seem to him like I was passing stones. He also said, almost to himself, “the disease doesn’t follow the book.” He wrote down on a piece of scratch paper some OTCs (over the counter medications) and handed it to me. “This is what I would give you,” he said, “but a 9. You say it’s a 9?” Then, again to himself, “Must have a high pain tolerance or there would be more reaction.”

While he ruminated over what to do, I thought to myself, Well, I didn’t think screaming when you pressed down would help matters any. I was no longer the young woman who would curl up into a ball in a plastic chair and let my mother handle things. I was my own woman; so yeah, call it high pain tolerance or, better yet, self-control. It didn’t mean the pain wasn’t a 9.

This doctor knew me and that’s why I didn’t just go to the emergency room. He knew something must be wrong, even if he didn’t know right away what it might be. So, he sent me to the hospital to get a CAT scan, with the understanding that the OTCs would hold if they didn’t find anything. The plan, as far as I knew, was for me to get the CAT scan and to go home and wait for his call. That’s what I was expecting, but that’s not what happened.

Sleeping Through the Night

  • Posted on June 20, 2014 at 10:00 AM

I have this goal that somehow, someday I will be able to go to bed at night, sleep through the night, and stay awake through the day. In other words, I want a normal sleep experience. I want to have this normal sleep experience consistently. This may or may not involve an occasional nap, but that’s okay.

This is a dream that seems far from my reality. My sleep schedule is no longer a schedule. I can get four hours of sleep at a time, sometimes up to six, but that can happen at any time. I can force myself to be awake at a certain time, but the effect is only temporary. My sleep schedule rotates from being awake during the night to being awake during the day, with about two complete shifts per week. I rotate from a 18 hour day to a 36 hour day (in contrast to a 24 hour day), but those are just rough estimates. The point is that my sleep “schedule” is definitely not healthy.

So, I had a sleep study to start the healing process. That happened Tuesday night. I arrived around 9 pm. I was brought into a room that resembled a hotel room, complete with a bed, two night stands, a bathroom, and a television. I watched a video that explained the sleep study process and what they might discover about my sleep. After that was done, I got into my jammies.

Then, the technician wired me. It was similar to the boys’ EEGs, but different, too. The technician told me that most sleep technicians were actually EEG technicians. There were wires for my head, my face, and my legs. There were straps with wires across my chest and my abdomen. These wires were tucked in a “ponytail” and clipped to one of my straps. While they were uncomfortable, they felt psychologically restraining.

The sleep technician went off to her other patient and I filled out the paper work I was supposed to have completed before I arrived, as well as the few forms that I got from the technician. I finished shortly before the technician returned to plug me in so I could go to bed. I was definitely drowsy. A few more wires were added, including a bandage-like one for my finger, which would measure my blood oxygen levels.

It was all pretty painless. Then, I went to bed on the adjustable bed. I made it a soft (but not too soft) number 50. The pillows were thinner than I usually prefer. The technician became a disembodied voice over a speaker. She ran me through a few maneuvers – breathing, wiggling one leg, then the other, looking (with just my eyes) up, down, and to each side. Then, I was allowed to roll onto my side, using one of the pillows to help support my upper leg, and go to sleep. Sometime during the night, the disembodied voice told me to sleep on my back, so I did. Then, I fell asleep again and had a weird dream about being strapped and wired with a disembodied voice giving me commands. It wasn’t frightening, but it was a sci-fi version of the real experience I was having and it was a bit disturbing.

I woke up around 4 am and had to go to the bathroom. It’s a good thing it wasn’t urgent, because she had to come in and unplug me before I could go, which was different from our EEG experience. I told her that I wouldn’t be able to sleep again, which is usually true. She needed me to lie down for another hour, even if I didn’t sleep. So, I did, though I didn’t want to. I was restless and awake and annoyed for some time, and then I heard the disembodied voice telling me it was time to wake up. Somewhere in between those two events I fell asleep, though it didn’t feel like I had. It seemed like I was conscious of the time between, but maybe I wasn’t. I wondered what level of sleep I’d reached in the duration, but I didn’t ask. She unplugged me, unwired me, asked me a few questions, gave me a few instructions, and I got dressed.

I slept through the night and I felt better rested than I usually do. I wasn’t as sore as I usually am in the morning, but I don’t know if it was because I didn’t toss and turn as much (because I was conscious of being wired, even in my dreams) or if it was because I’d made the bed much softer than my own. I was able to drive to the convenience store and then to Dunkin’ Donuts and then home without a problem, even though I hadn’t had my morning medicine. I took that when I got home and tried to get back into my routines. It was difficult, because everything was different. It was disorienting. But I’d slept. Hopefully it provided the doctor with the information he needs to help do it more often. We’ll see.

Pacing the Day

  • Posted on June 16, 2014 at 10:00 AM

As I write this, the full moon is still up, though now the dawn is too--and so am I. Technically, today (as I write this) is Saturday. My day started at 5:00 AM yesterday (Friday) morning. I woke up bright and early in order to be to court on time. As my husband so eloquently said, “No day is a good day when it starts with a court appearance.”

I spent my early morning hours journaling, praying, and trying not to give in to the worry monster within. I got ready. Then, I waited for my Mom to arrive. She got here and we rushed off and barely got into the room on time. Then, we waited for about an hour for our case to be called. It was painless, but exhausting. And the worst part was that I felt as if I hadn’t actually accomplished anything.

Mark and I went to my Mom’s to move some televisions around and we went home. I finished journaling and praying. I worked my way through my self-development exercises. I checked my e-mail. I felt so exhausted I went to bed without feeling as if I’d accomplished anything.

I’m getting better at recognizing when my body has had enough on whatever sleep it’s gotten, in this case a total of four hours. Of course, acknowledgment isn’t enough. Action is required. That means going to be at 10 or 11 in the morning, even though I haven’t actually done anything, because my body is ready to sleep. If I miss that window of opportunity, then I could be up for sixteen hours with all my brain cells putting up neon signs that would read “Out of Order.” At least, I’m assuming they do. It’s not like there’s any cells that retain the ability to read when that happens, so there’s no way to know for sure. Anyway, the point is that there are consequences if I ignore my body.

So, I went to bed. I woke up around 5 PM. I got to work. I took a break from work. I put the boys to bed and got some caffeine. I went back to work. I took a break to read with Willy and then I sent him to bed. I went back to work. I took a break to go grocery shopping. And now I’m back at work. Pretty soon I’ll be going to bed again. At least, I hope I will be.

This is how I pace my day. I assess my responsibilities, my appointments, and my deadlines. I compare these to my fatigue and my concentration. I plan accordingly, at least as well as I am able to do. I pace myself. Day and night have very little to do with it.

The Trouble with Self Actualization

  • Posted on June 11, 2014 at 10:00 AM

I’ve often looked at Maslow’s Hierarchy of Needs and been proud of the fact that I was pursuing self-actualization.

Image from http://www.simplypsychology.org/Hierarchyofneeds.jpg

I have often sought to fulfill my creativity and pursue my talents. Yet, it’s called a “Hierarchy” for a reason. According to Maslow’s theory, you’re supposed to pursue these things in order and I’ve never been very good at that. Now, from what I understand, Maslow’s hierarchy hasn’t held up against professional academic scrutiny and study. This is probably at least partially due to the fact that you can pursue needs out of order. But still, there are reasons that certain needs are fundamental to survival.

When it comes to personal pursuits, striving for self-actualization is not at all a bad thing. When it comes to raising a family, then providing for physiological needs, safety needs, and belonging needs is a pretty big deal. It’s a big part of the job of the parent.

If your priorities get out of order, it can become difficult to choose to meet physiological or safety needs, when you want to skip up to mastery and creativity. It takes balance. I keep reminding myself of that.

Closer to Balance

  • Posted on June 9, 2014 at 10:07 AM

I’ve made a decision to seek balance in my life for the sake of my health, and for the sake of my family, and for the sake of our financial well-being.

As the breadwinner of the family, I need to work to win our bread. As a freelancer, I don’t get paid if I don’t actually work for my clients. There’s no paid sick leave, no vacation pay, no paid medical leave of absence for me. If I don’t work, we don’t have enough money to pay our bills and buy our groceries. We do get assistance, but it’s not meant to be enough to live on.

As the mother of three children with disabilities, there are a lot of external expectations (from outside our family) and there are even more internal expectations (from inside our family). There are wants, needs, and urgent matters. All these things demand my attention. Then, of course, there are the normal household tasks, like shopping, dishes, and laundry. There’s also the morning routine and the nighttime routine, both of which are about to change since this is the last day of school. When I can’t take care of my family, there is only so much slack my husband and our support team can pick up. I’m essential to my family’s well-being, not just our financial well-being.

As a person who is experiencing a disability, there are doctor’s appointments to attend, medications to take, and forms to fill out in preparation for appointments. There’s also sleep to get and food to eat and muscles to stretch. These are all necessary parts of trying to get my sleep, concentration, and pain levels under control. The better I manage my health, the more capacity I have, and the more I have to give to my family and my work.

All these things demand my time, my attention, and my commitment. And that doesn’t even include things like personal relationships, exercising my creativity, and watching some stress-reducing, pure-pleasure television shows (I’m currently watching Charmed for the first time).

I need to find balance. Admitting this is helping me to move closer to attaining it. I find that I stop more to question my own compulsiveness and reflect more on what is important, instead of simply responding to what is urgent. I’m a work in progress, but I’m getting closer.

Life Leadership

  • Posted on June 6, 2014 at 10:00 AM

With capacity-building in mind, I decided to use some of this “downtime” to crack open some of the self-help books I’ve been stockpiling. I decided to start with First Things First by Stephen Covey, in the hopes that the title’s onto something.

In the first chapter, Covey says, “Fundamental to putting first things first in our lives is leadership before management: ‘Am I doing the right things?’ before ‘Am I doing things right?’” (pages 27-28 of the 2003 edition)

While I haven’t gotten much past this quote yet, the idea is to engage in life leadership instead of time management, or, perhaps, along with time management. I’m not really sure yet.

I am frequently guilty of letting life lead me around by the nose. I try to do the right things, but that effort doesn’t pervade the entirety of my life. Mostly, I try to adhere to the right ideas: people over possessions, love over hate, put your back into, etc.

I’ve spent a lot of time building towards my dreams: get married and have children, become a published author, change the world. I’ve spent a lot less time, at least as far as results go, ensuring that I have the foundation to pursue these dreams. Things like earning a sufficient living come to mind here.

I’ve learned a measure of practicality over the years, but the thing is that I have to learn it. It doesn’t come naturally to me. I’m a dreamer. I’m comfortable with being a dreamer. But I’m uncomfortable with the reality that results from spending too much of my time away from the practical realities of my life.

Part of me wonders if the idea of life leadership will help me balance the two, resulting in a practical dreamer. Or if the idea is better suited to helping practical people embracing the dreamer locked within…letting him or her come out to play more frequently.

My dreamer-self has already set the course; now I need a practical captain to steer the ship. How do I become that captain?