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Disability Identification

  • Posted on January 9, 2015 at 10:00 AM

I’m reading Nothing About Us Without Us by James I. Charlton. One of the topics he covers is disability identification. As the argument is presented, one of the biggest challenges of the Disability Rights Movement (DRM) is getting people to both identify with their disability and their peers with disabilities and to feel empowered; because, dominant cultures assert that disability is weakness and inferiority.

As the mother of three children with disabilities, it was easy for me to reject the idea that my children were weak and inferior. I value my children as they are for who they are. It was easy to recognize that, yes, they have disabilities, but no, their disabilities don’t mean what the dominant culture says they mean. This is especially easy when confronted with the dominant culture’s willingness to see children like mine as disposable, where parents who murder their kids are the real victims. That makes it really, really easy for me to reject the dominant culture wholeheartedly, because I just can’t find it in my heart to sympathize with parents who kill their own kids, let alone empathize with them.

As a woman with a newly diagnosed disability, it’s a bit harder for me to reject the idea that I am weak and inferior while still acknowledging my disability. Really, the only thing I have going for me in that regard is that I was already primed to reject the dominant culture. When you’ve lost abilities that you once had, it’s hard not to see yourself as “less than” you were. I don’t have the same physical capacity I once had, but since I was never a very “physical” person, I can handle that. But I don’t have the same mental capacity I once had, either, and that’s much harder for me to cope with, because I was and am a very “mental” person.

I think a lot. I think when I work. I think when I “play.” I think instead of getting bored. I am a nearly endless source of my own “amusement.” I hate the fact that I lose track of my own thoughts. I hate the fact that I can’t remember things as readily as I used to. And I hate the fact that fatigue and cloudiness interferes with the way I want to live my life.

I can deal with the pain of fibromyalgia a lot easier than I can deal with the mental impact. There is part of me that sees that impact as making me less than I was. For that part of me, acknowledging my disability is acknowledging that I am less than I was. But there’s another part of me that knows that this struggle misses the point.

When people without disabilities regard people with disabilities as being “less than,” they’re not talking about being less able, they’re talking about being less human. The dominant culture treats people with disabilities as if they were less human, less valuable, less worthy of life, of rights, of support.

I am less able than I was, but I am no less human, no less valuable to my family or my clients, and no less worthy of my life, my rights, and the support of my fellow human beings.

This is simply true.

I could make it a matter of arrogance and point out that I was more able before my disability and that I am still more able than most of humanity with regards to the things that I value. I am still more able to handle three children with autism while respecting them and nurturing them into adulthood. I am still more able to write a damned fine piece, whether it’s a blog post or a web page or a book. I am still more able to create a loving, sustainable marriage with a partner with bi-polar disorder. I am still more able than anyone else to live my life.

That’s true, too; but, it’s not the point.

The point is that people with disabilities should feel free to identify as having a disability without shame and without being made to feel less human. The point is that people with disabilities should not be ashamed to associate and affiliate with other people with disabilities, or even with other people without disabilities. Humanity isn’t measured by degrees of ability. Humanity is an either/or option. Men are human. So are women. But gorillas aren’t. Dogs aren’t. And the fact that I can’t remember the right word(s) to describe the distinction doesn’t really matter either.

We are all human beings, regardless of our abilities and our disabilities, and we all matter.

 

 

(This is not to be construed to mean that we should be free to go around killing gorillas and dogs for fun, because they don’t matter. Animals matter, too. So do plants, for that matter. It’s just that, in my opinion, people matter more.)

(Now, I’m going to go ask my husband what the word(s) I can’t remember are, because it’s bugging me that I can’t remember. Apparently the words I couldn’t remember are binary distinction, but Mark doesn’t think it works, because there is more than one type of animal, so it’s not binary. But either/or and yes/no are binary, and that was the point I was making, so I’m going to stick with the thought that refused to be pinned down.)

Stupid and Useless

  • Posted on December 4, 2014 at 10:00 AM

Those are loaded words when you’re part of a community of people with disabilities. Far too many people have been derided as stupid and useless for far too long. Yet those words struck a chord with me.

“Stupid useless pain is much harder to bare than pain with purpose.” –Dr. David Schnarch

I read these words in a book about marital relations. Of course, the book in question addresses far more serious situations than I am concerned with, but I’m finding the basic tools are applicable. More to the point, the pain I thought of when I read these words did not involve (at least, not directly) my husband Mark.

I’m not prone to hyperbole, so believe me when I say the last two months have been hell for me. I’ve had meds messing with my mind. I’ve had so many troubles and complications that I’ve given up hope, gotten it back, given it up, and gotten it back more times than I can count. I’ve been sick for over a month and got so used to feeling weak and dulled that I didn’t realize how far I’d slipped until I started to climb back up to my strength. I’ve been angry at God. I’ve coughed until my lungs hurt and then coughed some more. And, no matter how much I try to get back on track, I keep slipping back into a cycle of decline-and-recovery. I’m still not even with myself.

Most of this time, I’ve felt like everything I’ve been going through was stupid and useless. It’s been painful—physically, mentally, emotionally, and spiritually painful—and it was useless and stupid and ENOUGH IS ENOUGH ALREADY!!!

Like most human beings, I seek relief when I’m in pain; yet, I’ve gone through some incredibly painful experiences and I’ve bore them much better because I’ve understood their purpose. I’ve born these last two months quite poorly. I’ve done things I despise, like yelling at my child for being uncooperative because I just couldn’t handle one more thing. I haven’t done things that I should, like finishing all the work I promised to my clients months ago.

As an adult, when Mark moved to a new place, he’d walk around until he got thoroughly lost in order to learn more about the place he chose to live. On the other hand, we took a trip as a family and I ended up missing an important turn. Instead of going down I-35, we were going down I-90. We got so lost and mixed up trying to cut across between the two that Mark literally used the sky to navigate for me. I hate being lost. Mark takes it in stride and he finds the way forward.

These last two months I’ve been lost and I hated every moment of being lost. I hated being weak. I hated being tired. I hated being in pain. I hated my complete inability to turn things around. I was fighting so hard against the things I hated and I wasn’t getting anywhere. It was stupid useless pain and it was eating me alive.

Then, I stopped fighting. This time it wasn’t a matter of giving up; it was more a matter of looking around and looking up. Two things occurred to me. First, I knew that I had finally completed my memoir and that, whatever happens, it will be published. Second, I saw that in trying to start from scratch I’d begun writing again.

Granted, my business is a writing business. I’m always writing something. But everything I’d been writing since I obtained my graduate degree in writing was written with a specific purpose in mind. Whether it’s for a client or for myself, it’s all been driven by a purpose, by an objective, by a goal. Everything I’ve written has been practical.

I am not, naturally, a practical person. I’m a dreamer. In living my dreams, I’ve pursued practical purposes that, together, are supposed to realize my dreams. But practicality doesn’t come naturally to me. Dreaming does. So, when it came time to replenish my creative well, I started writing the passionate ideas that came to me—without a predefined purpose. And it was liberating.

Now, practically speaking, I’d stopped writing in order to better use my time in my writing business. I suspect that there was no other way to get me writing again than to knock me so thoroughly down that I had to go back to my roots as a writer just to stand myself back up. You see, decades ago when I started writing, it wasn’t with purpose—just passion. I loved to write. Writing excited me. It thrilled me. Cultivating my talent and turning it into a business was something I was proud of, something I loved.

Then, once I’d actually got my business up and running, there came the pressure and the consequences of that pressure and the consequences of those consequences. I became driven. I was still inspired and I was still passionate, but I wasn’t using that passion or that inspiration, not to its fullest. I was working towards a purpose. Everything else fell to the wayside, including the love I had for what I was doing.

So, while I’m still recovering, I’m recovering with a purpose. I’m recovering my faith. I’m recovering my inspiration. I’m recovering my work ethic. And, yes, I’m recovering my health, too. My life is imbalanced, but I’m getting better now that I have a purpose I can really live with, despite the pain. And I’m about one-fourth of the way through the first draft of a novel that I’ve been trying not to write for at least six months. Now, that was stupid and useless, wasted effort. And I realized it by realizing, once again, that pain is necessary for growth and renewal.

My Confession: I Have a Disability

  • Posted on October 29, 2014 at 9:56 AM

If you haven’t guessed by my blatant lack of posting, I’ve been having a hard time of it lately. I’ve been feeling like Job; except, I have conscience enough to feel guilty for feeling like Job, because I know Job had it way worse than I have got it. After all, Job’s miseries started with the loss of all of his children in a “freak” accident. Thankfully, all my children are alive and well.

It all started with a good thing. I decided to try Chantix to help me quit smoking once and for all. It worked for my uncle. It was working for my mom. I was ready to bite the proverbial bullet and have a go. I was warned that it might make me “a little more tired” and that it may cause some “vivid dreams.” These warnings did not prepare me for what was to come.

While on Chantix, I slept 18 to 20 hours a day. The worst part, though, was that I wasn’t even aware of how much I was sleeping because I had very vivid dreams that I was living my life, including turning in the assignments I’d promised to my clients.

This went on for two weeks before I accidentally missed a dose and I started to realize that things weren’t making much sense. I became suspicious—paranoid, really—and I decided to intentionally miss a dose. I was sick with headaches, nausea, and a pervasive dullness that made me want to crawl right back into bed, but I was also aware, with a growing sense of dread, that there was a distortion in my sense of reality.

So, right before my mom’s hip replacement surgery, I stopped taking Chantix altogether. I spent the day at the hospital, which is its own kind of misery. We had a bit of a scare (regarding the delay in my mom’s “recovery” period). Yet, I was able to stay awake and alert and conscious of my surrounding throughout the day. I committed myself to ‘ssessing out what’s what.

The next day, Tuesday, went by pretty quickly, as I needed to be there for both my mother and my children. But that evening I hunkered down to try to figure out what had really happened and what hadn’t. I had over 800 e-mail messages in my in-box. That freaked me out. I shut down my e-mail and went to my assignment folders. I couldn’t find any of the work that I remembered doing. I went back to my e-mail, sent off a frantic message to my co-author, and called it a night. Honestly, I just wasn’t up to facing the dreadful truth. I was hoping to wake up to discover that this was just a nightmare and everything was really just fine and dandy.

Wednesday morning my co-author and I had a Skype meeting and he gave me the nitty gritty from his end of things. I’d been gone for two weeks. He couldn’t get in touch with me via any of my known methods of contact. He’d honestly feared that I, and possibly my entire family, had died.

By then my e-mail in-box had over 900 messages (mostly spam). I tried to sort out the spam from the legitimate messages, got through about 400 messages (just sorting them), and sent off heartfelt, honest apologies to my clients. I then went upstairs, told my husband how thoroughly I’d messed up, and cried on his shoulder for a good 15 minutes before I was ready to face the music. I went back downstairs and started reading the messages I’d missed.

Despite the mess my business was in, life went on around me and there were many needs I had to meet. My mom was in the hospital until Friday; then, she was moved into a nursing home. The boys needed me, my mom needed me, and my clients were all very understanding. I struggled to get everything back under control, but my confidence was shattered. I’d messed up so thoroughly and, even though it wasn’t exactly my fault, it was definitely my failure. I felt it keenly.

Day after day I tried to manage everything I needed to do and everything I hadn’t done—and I failed. Day after day, I tried and I failed. Again. Again. Again. Again.

The stress exploded exponentially and I succumbed to a fibromyalgia flare up that floored me completely. Before the Chantix I’d gotten my daily, regular pain down to a 3 out of 10 (10 being bad). Now, I was at a 7 out of 10. (For context, my broken wrist, delivering my children, and my bouts with my gall bladder usually rang in at around an 8 out of 10.) My ability to concentrate was at a 2 out of 10 (10 being good). I just could not do my work. At all. I could barely meet the needs of my children and my mother. I could barely function. I felt even more like a failure.

Last Wednesday was my day. I woke up, got the boys off to school, and decided I could afford to take a nap. I overslept. Scrambled to get ready. Arrived late for the IEP I was going to duck out of early. Contributed nothing and left anyway. I scrambled to finish getting ready at my mom’s, but we just got later and later. We were supposed to leave by 2:30 PM. It was well after 3 PM when we actually left. I tried to make up the time as best as I could, because we were driving down to Chicago. This was going to be my night. This would turn everything around.

I was doing fairly well—just a bit late—when we ran into a major slowdown that suddenly became a parking lot. We waited for over a half an hour before things got moving and by then I was definitely late for my night. It was pass time for things to start when we got off the interstate, but I was determined to make an appearance anyway. This was my night!

I was going to my alma mater, except I drove right passed it because the building had been completely refaced and was now unrecognizable. I backtracked. My mom decided we could park; I didn’t need to take the extra time to try to drop her off in front of a building we couldn’t find. So, we parked in the underground parking area, right near an elevator which would take us up to the street. I unloaded her walker and we were off, albeit slowly.

I managed to find my school, about a block and half away, and we made it into the building and to the room where the event was taking place—just as people were leaving. I wormed my way forward to present myself to my former advisor. She got out the mic and got people’s attention. She introduced the award that was being given and then she introduced me, the recipient. I read an excerpt from the piece that had won me an award for overcoming adversity. I was able to read it without any anxiety, because, honestly, how much worse could it get? I watched the audience respond to my piece with gratification. Then, when I was done, the audience applauded. This was my moment. This was the moment when everything would magically turn around for me.

Except it didn’t. It started with the walk back to the car. We walked back much more slowly, for my mom’s sake. And it was during that long, slow, excruciating walk that I realized that the cramps I’d gotten from the long drive would not be worked out of my legs before I had to get back into the car and do it all over again. Once we were back on the interstate, we still had to swerve through endless miles of non-existent road construction, where miles and miles of the road were “under construction,” but there were only two areas (with many miles between them) where workers were actually working. As bad as that was, the worst was yet to come.

The “highlight” of the evening was our stop at the Road Ranger. Mom didn’t like to pay at the pump, so we went in to pre-pay. My legs were still cramped and my mom still had her walker, so the walk to the store was slow going. Mom pre-paid for the pump. We went to the rest room. We got some drinks and hot dogs. Then, we made the slow, painful way back to the pump. But the pump wouldn’t work. I walked back to the store and the clerk explained that our transaction had been canceled, because we took too long. I walked back and my mom elected to use her credit card to pay at the pump instead, because I really, really didn’t have to walk back to the store. So, I swiped the card through, made the appropriate selections, and set up the pump. The gas didn’t come. I waited and waited, but the gas didn’t come. So, I let go of the handle, turned back to the pump, and tried to see what was wrong now. Then, the gas started to flow and it started with so much force that the pump popped out of the gas tank. I turned just in time to be sprayed from head to toe with gasoline—mostly in my face and all over my skirt.

I stomped back to the store and reported the incident to the clerk. She just blinked at me. I stomped into the rest room, cleaned myself up as best I could, but I still reeked of gasoline. I stomped back to the car and did the only I could. I popped the trunk, threw my coat and my skirt into the trunk, slammed it shut, and put on the trench coat I’d lent to my mom. The shirt I was wearing was a tunic, long enough that some people—but definitely not me!—might wear it as a dress, so this wasn’t quite as “revealing” as it might sound.

Finally, I got into the car and was prepared to drive away and never, ever come to a Road Ranger again. But my mom said she wanted her receipt. So, I drove her up to the store and got out her walker and let her go in by herself. She came out a little while later, saying that not only did the clerk say that I must have “done it wrong,” as if I hadn’t been pumping gas without incident since I was fifteen, but also claiming that she’d already given me the receipt. My mom told me to come in with her so she could get her receipt.

“Mom, I’m not wearing any pants!”

And that was that. We drove away. When I’d finally gotten us into my mom’s garage it hurt to get out of the car, because my sweaty skin had stuck like glue to my mom’s leather seat. I limped to the other side, helped my mom get out and up into her house. Then, I changed back into the clothes I’d worn for the IEP and I went home.

The days that followed didn’t get better, because the sinus infection I had had become full-blown bronchitis, and got progressively worse. My productivity went from being negligible to be nothing at all. And I was angry. I was angrier than I had been in a long time. As a person of faith, I’d been praying this whole time for some help—divine intervention. The Bible tells us that God answers such prayers. My prayers were being answered with silence and I was angry. I’d had enough. I couldn’t take it anymore and I couldn’t do it anymore and I was done. I was DONE. I QUIT. And if God wanted to change that He’d have to do something big.

But we develop routines for a reason—at least, the ones we develop on purpose—so, the next morning I did my prayer journaling, grudgingly, then I did my independent studies. And, while my anger and resentment didn’t evaporate, I realized something. There was that nagging voice saying, “Of course you couldn’t take it, of course you couldn’t do it, of course you should quit...” And I finally stopped long enough to examine why.

I am a person with a disability. And as long as I’ve lived I’ve heard that people with disabilities can’t… It doesn’t matter what it is, there’s always somebody saying that a person with a disability can’t do it, or can’t do it well, or can’t do it enough, and shouldn’t try to do it at all. And for as long as I’ve been aware of the disability rights movement I’ve been fighting this kind of stereotyping. I’ve been fighting the oppression that says that a disability—any kind of disability—dictates what we can and cannot do. Each of us has things that we can do, things that we can’t do, and things that we cannot do very well but might enjoy doing anyway. Disability doesn’t change that. I know this. I believe this! I fight for the world to see this!

But it doesn’t save me from that subtle and not-so-subtle voice I’ve heard all my life.

So, here is my confession: I am a person with a disability and I gave up—just for a day—for no better reason than that I believed that, because I am a person with a disability, I couldn’t do it. But I won’t live my life like that—that’s really something I just can’t do.

It Doesn’t Take Long

  • Posted on August 13, 2014 at 10:00 AM

Speaking of bugs, over the weekend I had the energy to do something I hadn’t done in months and months. I knocked down the cobwebs that had accumulated in my den. You see, it doesn’t take long. My den is in the basement. The den is the only room that’s “finished” in the basement and this room is only semi-finished, with a bare-beamed ceiling and either bare-beamed or concrete block walls. Considering that our foundation isn’t sound, bugs can find all kinds of ways to get in and the spiders just eat ‘em up. So, there are cobwebs wherever I’ll let them grow. I’ve even had a few over-friendly spiders land on me over the years. (But never in my pants!!!)

Recovering from my flare-up and subsequent diagnosis of fibromyalgia has been a long process, especially with a surprise surgery thrown in to complicate things. I still have days that are more flare than flair. Anyway, the last time I really cleaned was sometime before May and probably way back in 2013. I went through an entire 16-sheet box of Swiffer Sweeper cloths just to get the layers of cobwebs down in my den alone. Ick!

A lot of other things haven’t gotten done. Between my being out of commission and the boys being home for the summer, the house is in dire need of a thorough cleaning. This is planned for the week they go back to school, but I’m thinking I’ll work my way up from my den and just keep going now.

School-Year Anxiety

  • Posted on August 8, 2014 at 10:00 AM

After the muddled end of my last school year, I admit I’m anxious about starting up school again. I still haven’t quite gotten a handle on my fibromyalgia. My business is growing, but it’s growing primarily in a way that involves me doing more work to make it grow, as well as the work I need to do to provide for my family. I’m not up to a full day’s worth of work, quantity wise, even though it takes me a full day (or longer) to do it. I’m not sure how I’ll strike a balance between work and school once it starts, since both are priorities. There is so much that is unknown and I feel so unprepared, that there’s definitely an anxiety factor involved.

Willy, on the other hand, seems willfully unaware that school will start in less than a month. He will acknowledge it if I bring the issue up directly. He’ll discuss what concessions he’s willing to make with regards to new clothes, new school supplies, new shoes, and a new backpack. He’s willing to talk, briefly, about how he felt last year went. He won’t talk directly about his hopes and fears about the coming year. It’s difficult to weigh his anxiety levels, because he asserts a blasé attitude that seemingly belies his willfulness on the matter.

Alex, of course, is impossible to gauge. Honestly, I think getting back to the routine of school will be good for him. We have had something of a routine this summer, which has helped; but it’s a routine that spreads across the week, not over a single day, and it’s subject to far more change than the routines of school. This is not to say that he isn’t experiencing anxiety over the start of school. It’s more to say that it’s difficult to judge that anxiety relative to the buzz of anxiety he seems to feel most of the time. There are times when he’s completely free and, by noting those times and repeating the surrounding circumstances, we’ve even been able to increase them. However, the onset of anxiety is never so easily pinned to one cause or another, because he can experience both instantaneous and delayed reactions, depending on his processing during the moment. He seems to be handling the idea of returning to school well, but it’s hard to tell.

Ben is another matter. He seems genuinely unaware of the imminence of school. If I bring it up, his behavior reflects a belief that what I’m saying is not interesting, and therefore not worth attending to. This doesn’t necessarily suggest a blasé attitude similar to Will’s, because Ben’s hyper-focus can be very difficult to break through, even if you attempt to do so with something immediate, tangible, and desired. Ben has very much been “in his own world” this summer. He’ll zone into something desired and prolong it as long as possible. The easiest way to break him out of it (not that we do this on purpose or anything) is to give Alex the opportunity to do something he likes to do that annoys Ben. Ben will stop whatever he’s doing, wherever he’s doing it (as long as they’re both in the same house) and try to make Alex stop. If Ben cares one way or the other about the start of school, then he’s not saying so. I suspect he’ll care once he has to go back to focusing on tasks and timetables that other people set for him.

Of course, Mark is the stay-at-home parent who is not going to school, so the start of school means something different to him. I remember what that was like and, if he’s anything like me, he’s looking forward to the relief. After all, he’s borne the brunt of a difficult summer. He’s definitely ready for a break! And he definitely deserves it!

One Long Night

  • Posted on August 4, 2014 at 10:00 AM

When one’s sleep schedule slips like mine does, it’s hard to know whether one will be awake during the day or during the night or both. I awoke Thursday afternoon. My progress was slow, but my energy was high. My thoughts were often scattered. I had work to do, so I made what progress I could as the afternoon inched towards evening and evening inched towards night and night inched towards morning. Still, I wasn’t done and I wasn’t really tired.

I knew I should stop and allow myself to wind down, but there were Friday things I had to do and Thursday things I hadn’t finished. I pushed myself onward and onward and onward and still I wasn’t tired, but nor did my progress speed up.

I did every Thursday thing I had to do and every Friday thing that must get done. Then, I finally crashed—leaving both Thursday and Friday things left undone, including a date night with my husband.

Slowly, slowly, over the weekend, I made up a few things here and did a few things there and still I inched by, mostly completing those things that couldn’t wait. Mark got his date night. I got some sleep. Every time I slept, though, I seemed to wake up sore and stiff like I’d wrestled with bears all through the night or maybe rode a long road on horseback in my sleep.

That one night turned into two workdays put together. That one night cost me my weekend and several days’ worth of productivity. I haven’t begun to catch up to what’s been leftover from that one night and the days that followed. At the time, it seemed “worth it.” I’ve got to remember that’s it’s not. I’ve got to remember that I don’t have that kind of capacity, even when it seems that I do, because I can’t recover like I used to do.

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.

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.

Waiting to Know

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

So, I went to see the rheumatologist. On the one hand, she could confirm that all of my symptoms are consistent with fibromyalgia. On the other hand, she told me that fibromyalgia is only diagnosed when all other alternatives are exhausted. Now, I’d thought I’d been through that already. When I first went in to see my regular doctor with my symptoms – before they’d gotten worse – he had the lab draw a lot of blood and run a lot of tests. Apparently, the rheumatologist knew more tests that should be run before a diagnosis of fibromyalgia could be confirmed.

I did quite a lot of research, so I was rather surprised when she started listing off possibilities that I’d never heard of or never considered. Ironically, while some of these possibilities seem a lot scarier than fibromyalgia, she was adamant that all of them are considerably more treatable than fibromyalgia and any one of them would be a better alternative that settling for an inaccurate fibromyalgia diagnosis. She reinforced this idea by telling me that she wouldn’t be upping my dosage for the drug my regular doctor had prescribed, because the improvement I was seeing was “as good as it gets.” She did, however, prescribe an additional medication to help my muscles relax enough so I could sleep better. Perhaps the fact that this new medication has only had marginal results is indicative that she might be onto something. I also learned that I already have some arthritis, which may be why rheumatoid arthritis came up as a possibility.

So, not only did she have the lab draw even more blood for even more tests, she also had me go in for an X-ray. To top it off, I’ll be having a sleep study done in the middle of June. (I wonder what will happen if I can’t sleep for them during the study.)

It will be another month before I see her again and see what all of this means. Will it be fibromyalgia or will I be researching something new? Will I get a treatment plan or is this really “as good as it gets?” Personally, I’m inclined to hold out for something better, particularly when it comes to the concentration factor.