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May 14 2015

And miles to go before I sleep

And miles to go before I sleepDamn, I’m tired. Tired of being tired. Tired of complaining about being tired of being tired. There’s a lot of tired here, is what I’m saying. Can’t even yawn properly, to maybe fend off some of the tired, because a big, satisfying yawn extends my jaw too far and after last week’s root canal (following my flute solo with all that practicing) my TMJ-riddled jaw is just not up for much. Kinda like me. Because tired.

Tonight I have a sleep study to see if the tired has an actual cause, or if I’m just generally screwed. Frankly I think it could go either way. It’s either some sort of restless limb thing going on, twitching my brain enough that it doesn’t properly rest while I’m sleeping, or I have chronic fatigue syndrome and there gotta be hella lot of changes here for me to function. All I know is that more days than not I’m alternating activity with thoughts along the lines of “holy hell I’m so tired I can barely stand it,” and that completing thoughts (or blog posts or book chapters or homeschool planning or flute studio planning or anything requiring me to think through more than two steps) is increasingly difficult. It’s depressing as hell, and for someone trying to pull out of the depression/anxiety vortex, tired is not helping a whole lot. My executive function tank is almost depleted, and as I have two twice-exceptional sons with marginal EF skills to scaffold, it ain’t pretty. Please see also: end of the school year please make the thinking stop.

When I met with the neurologist a few weeks ago, he asked how long I’d been exhausted. Without a trace of humor, my answer was “14 years.” I’ve been some form of tired since Andy was born, but it has gotten worse over the years. I’ve been so focused on meeting my sons’ needs (because their wiring required extra and unusual help) that I’ve neglected mine. And if the apple doesn’t fall far from the tree, and we can only conclude that my wiring is very much the same as theirs, then I also have extra and unusual needs, and should probably implement some of their accommodations into my own life. I just…don’t want to. Don’t want to be the kind of fragile that requires such changes. You know…human.

Just as I know I’m not alone in parenting these incredible kids, I’m certain I’m not alone in dealing with chronic exhaustion. Regardless of what my eventual diagnosis is, I will need to make some changes so I can enjoy life again. What sorts of self-care ninja skills have you implemented into your life to cope? How have you had to change in order to have something close to the life you envisioned? I have so much I want and need to do with my life, and am bummed that it’s probable many of them may need to be shelved.

That’s enough thinking for now. The demands for MOAR FOOD from the teen and preteen are now an ear-splitting din and I must go hunt and gather so my wee widdle ones don’t starve to death.

But damn, I’m tired.

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  1. Terri Tyson

    Get a check for Epstein-Barr syndrome. It is a simple nose swab. I have had it for years and it goes intno remission then raises it’s ugly head once in awhile. Think I’m crazy? Goggle Cher and Rosanne-Epstein-Barr.

    1. Jen

      I’ve had mono twice; Epstein-Barr syndrome wouldn’t surprise me much.

  2. My Kids Mom

    I’m getting much better at saying no. This year I decided to do half what I’d previously agreed to do. It ended up being more that that, but it was an improvement. I ALWAYS go to bed for 8 hours, sometimes more, and I must be fed every 4 hours like a toddler or I start to sag. I also drink less alcohol and caffeine since I decided I didn’t sleep as well after too much of either. I slept deeply, I thought, but it seemed less refreshing. So, nothing huge. Oh, I also indulge in 2pm power naps when I can.

    1. Jen

      Wish I could have the power naps, but that’s right before one kid gets home and I head off to teach. :/

  3. Sheryl Stoller

    Hope you get useful results that put your mind and body at ease, and that anemia and vitaminD checked. In the meantime, I wonder whether wondering aloud nonchalantly with curiosity that has no trace of resentment (ah there’s the rub – acting/faking til making it) what they might be able to handle/take care of on their own while you sit down til you feel better. Sending well wishes, Jen!

    1. Jen

      There are certainly things the boys could be doing on their own while I rest and recuperate. The challenge is that getting them to do those things takes as much energy (if not more) than just sucking it up and doing them myself. 🙁 Balance.

  4. BeckyG

    In my life with two complicated kiddos five and two, it’s either self-care or sleep, but not both. I go crazy without both, so I feel discouraged, and tired. I hope you get answers, and rest.
    BeckyG recently posted…Start SomewhereMy Profile

  5. Tanya

    When I a) got CFS and then b) months later (because it was an abrupt onset for me) accepted that this wasn’t going to change in, say, 6 months, but that it was a big deal, I got very, very serious about limiting what I did. Ruthless Prioritization (a lesson from a previous boss) was my mantra. If it wasn’t right near the top of the priority list, it flat-out didn’t get done and I shuttled away as much guilt as I could.

    I set a hard bedtime for myself and kept to it (I think it was 9pm? my kids were 1 and 3 so that factored in). I drastically dialed back my expectations–for things to do with/for them, things around the house, things outside the house, everything. Over the years (and I am much better by now, several years beyond when a CFS diagnosis fit), my kids have had more responsibility in terms of helping with household stuff and I’ve said “No, I’m just not up for that” many times.

    I also carried snacks with me always. Maybe that was just a me thing, but stress had made me very intolerant of having long (aka normal) stretches between meals and so I carried portable snacks everywhere, including on my end table at night. It helped.

    I also sought out an alternative healthcare provider that I felt had a good idea what was causing this in me. I got lucky, to some extent, and got started on a good path fairly soon. But I always had the conviction that it was something that needed to be understood to be fixed, and that it was fixable. And that both my kids, even my older who was born before my CFS onset, were affected by the same underlying problems and would benefit from the same approach. But still, I focused on myself first because I needed to be functional and feel better.

    Good luck! I hope the sleep study went well (my husband needed a 2nd and felt like death warmed over after his first, so I sincerely wish otherwise for you).

    1. Jen

      I’ve been doing alternative medicine for years. Seven, maybe? But I think many of the suggestions you have here may need to be added to my routine.

  6. Fran

    I’m a new reader, just came over from Crushing Tall Poppies. I started noticing being tired after having my first child, but attributed it to having an infant then being pregnant again, with my second child born 17 months later and the oldest always being a poor sleeper. I’m not sure when the fatigue got worse. I tried to live a healthy lifestyle, but got to the point where I was taking a 2-hour nap almost every day in addition to a full night’s sleep. Then I just happened to quit eating oatmeal for breakfast and immediately felt better. I apparently had an intolerance to oatmeal. I still have tired spells, but not nearly as severe. I do try to limit gluten and milk since those bother a lot of people. I may have something hereditary also (either food intolerances or something else). I remember while growing up that often my mother fell asleep in her recliner in the afternoons or evenings. She passed away before I experienced my fatigue so I never asked her about hers. I had always assumed that was normal for someone who was middle-aged and smoked. I’m the same age now, but a non-smoker, and I think I’m more fatigued than what is normal. Anyway, consider what you may be eating, even if it is considered healthy. Oatmeal intolerance (they don’t call it an allergy) is not common, but you could have an intolerance or allergy to a different food. Good luck!

    1. Jen

      I’ve been gluten free for seven years for mainly that reason. It wipes me out (though I’ve gotten more sensitive over the years and now it does more to me than exhaustion). I suspect a food sensitivity may be involved, but in addition to something else we haven’t been able to find yet. I’m way more fatigued than normal; I did some stuff here at my desk and just put my head down for a few minutes. I made myself get up before I fell asleep. :p
      Thanks for coming by!

  7. Judi

    I just discovered your blog, and am so enjoying reading it. TAGMAX was my lifeline 15 years ago, but somehow I lost that essential connection to other moms of intense 2e kids… I think TAGMAX itself changed, and also my kids aged out of their demographic. Anyway, it’s so nice, so familiar, to read about homeschooling 2e kids again.

    I can relate to your feeling of exhaustion– I spent the past two decades **unbelievably** tired. My two kids were intense from the start, and then after homeschooling and ferrying and explaining all day, I’d stay up late at night planning and organizing and cleaning, researching and reading and wondering, worrying that I was doing the wrong things, or that it wouldn’t be enough. Or that even if we all survived, my brain would be tapioca and my interests would have been so thoroughly squelched that I’d never be good for anything else again.

    However– after all that racing, my children have suddenly (!) and amazingly (!) morphed from spirited kids to almost-independent adults. The constant racing forward of their life with me, the speedy conveyor belt of their childhood, has nearly ended. Frankly, from my point of view, and to my surprise, the end feels more like a painful “thump!” from the conveyor belt to the floor, as I try to figure out what comes next in my life… but as a HUGE perk to the change, I am enjoying the bliss of copious, deep, relatively worry-free sleep for the first time in literally decades.

    And all those things that I was so eager to do, back when I couldn’t, because I had the kids 24/7? Right now… at this moment… I just don’t want to do those things either. Maybe next year. Right now I am just enjoying breathing.

    >> What sorts of self-care ninja skills have you implemented into your life to cope

    GFCF (although we cheat more now), a pretty hefty daily supplement pack, a lamp-timer on the internet router, writing things down to avoid arguments, routines, reading, etc. Probably the normal stuff you already do.

    The best sleeping months we ever had were during my “low lights” experiment phase. Years ago, I read about blue light affecting the pineal gland, so for a couple of months we avoided blue and white lights for an hour before bed. We used amber nightlights around the house, red flashlights for reading books, oil lanterns and candles (in glass holders), and sometimes blue-blocker amber sunglasses. OMG, it was wonderful; within a week, we all fell asleep quickly and deeply. It made an unbelievable difference to our sleep patterns. I think people must have slept amazingly well centuries ago. The method is difficult to sustain long-term, but I’ve used it a couple of times since then for “sleep emergencies”, and it always works well. It takes a couple of days to take effect, and a consistent bedtime is required. The method realigns, reinforces, and entrains the body’s natural hormonal (melatonin) cycles.

    1. Jen

      I think I was on TAGMAX briefly. Maybe. I can’t remember.
      So good to know that sleep will come again, or hopefully will come again. I’m sleeping better but I swear the boys suck my energy just by being in the house. Hm. Maybe I should look into a low lights time. Summer may not be the best time to try it, as late as the sun is out. Or maybe it is, with our more relaxed schedule. Hm.
      Thanks for your comments! 🙂

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