Don’t Wake Me Unless You Love Me*

*Gold stars to anyone who can identify that reference.

Lately, I hate waking up.

That’s new–with my PTSD, I have always tended to avoid sleep, sometimes staying up for days on end.  Being asleep felt too dangerous and vulnerable, so I fought it in attempt to feel safe.  I also have multiple sleep disorders that went untreated for most of my life, which didn’t help on the sleep front.

But now, I like sleeping.  My body requires a lot of it now, especially when I’m flaring.  I can only be up for about four hours before I need a nap, even after a full night’s sleep.  It’s inconvenient, but for the most part I’m dealing with it.  And it feels so good to sleep.  I have a nice, soft mattress and a fluffy down comforter that even keeps me warm.  (I’m always cold, especially when I’m sick.)  I even bought myself a memory foam pillow to ease the neck pain I was getting with regular pillows.  Everything is soft and warm and safe, and when I drift off to sleep, I don’t have to feel anything.

But eventually you always wake up.

I wake up to pain in my belly like some angry creature is trying to claw its way out from inside.  I wake to the pain in my joints like someone’s been grinding down my bones with a metal rasp.  I wake to exhaustion, no matter how long I’ve slept.  I wake to weakness, never sure if I’ll stand up or collapse.  I wake to fear that this will never get better.  I wake to fear that this will get worse.  I wake to anger at the unfairness of having my life controlled by a disease I didn’t deserve, a disease that strikes people without rhyme or reason.  I wake to frustration and shame at the limitations it imposes on me.

So I’d rather sleep, but I get up and try to carry on like everything’s okay.  It’s just what you have to do with a chronic illness, I guess, but it’s so exhausting and isolating.

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20 Comments

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20 responses to “Don’t Wake Me Unless You Love Me*

  1. kat

    i really identify with what you say about sleeping, being safe, worryfree….and the inevitable waking. waking is so hard, so scary, so constantly painful, and sleep so blissfully inviting. heres hoping waking is less painful, and that you get to sleep as much as you need.

    • Thanks. I’ve spent all day in bed watching Supernatural on Netflix. I feel bad because my boss wanted me to cut some turfs for him, and I said I couldn’t. I feel like I should’ve–I can do it from my computer–but really I’m not mentally sharp enough right now to do a good job of it. So I’m resting, for now.

  2. You had me at memory foam pillow. 😀 No, in all seriousness, it seems to me that you do a great job managing your different health conditions. Health conditions that most of the population don’t understand and likely never will, unless it happens to them. I’ve read up a little bit on UC, and you are one brave girl. I’d be hiding under the covers all day, really never coming out, but you confront it on a day to day basis. Good for you, I’d say. What you have going on would wreck most people.

    • If you’d described UC to me 18 months ago and asked me if I could handle it, I’d have told you no way in hell. I think we never think we can cope with as much as we actually can. To me it’s not brave, it’s just getting through the day. It’s not perfect, and a lot of days it’s far from pretty. But we have this imperative to survive that’s stronger than we ever imagine.

  3. I have a friend with a rich psychiatric history who was recently diagnosed with a sleeping disorder. The specialist is writing a paper on her, because he believes many psychiatric patients have sleeping disorders which are written off as part of their psychiatric condition, and therefore go undiagnosed and untreated.

    Personally, I swing between insomnia and hypersomnia. I’m “suffering” from hypersomnia at the moment – but it doesn’t feel like suffering, because like you, I am enjoying sleep!

    • Good for your friend and her specialist! I have multiple sleep disorders (central sleep apnea, a sleep-related cardiac arrhythmia, alpha-delta disorder, and a circadian rhythm disorder) that went undiagnosed and untreated for years because it was ascribed to my psychiatric illnesses. Having the sleep study done changed my life because I could finally be treated with the right medications and started sleeping like a more-or-less normal person. I imagine I’m far from the only person with comorbid psych and sleep disorders, but we rarely get diagnosed or treated for sleep disorders because EVERYTHING is a symptom of our mental illnesses. (Ugh! That’s a whole ‘nother rant.)

  4. Olivia Hope

    keep your chin up, your doing great with the huge heavy plate you’ve got.. thinking of you!

  5. Have You Seen Me Lately?
    By Carly Simon

    have you seen me lately?
    What was it you saw
    Are you gonna catch me
    With my hand in the jar, naked singing in the choir?

    have you seen me lately?
    Did I look O.K.
    Are you gonna shame me and take my toys away?

    Don’t wake me unless you love me
    It takes too long to fall back to sleep
    Don’t wake me unless you’re a friend of mine
    I’d rather just fall back on my dreams

    Have you seen me lately?
    Did I miss a beat
    Are you gonna make me get back on my feet?

    Don’t wake me unless you love me
    It takes too long to fall back to sleep
    Don’t wake me unless you’re a friend of mine
    I’d rather just fall back on my dreams

    Have you seen me lately?
    Was I crazy?
    Don’t wake me…Don’t wake me…Don’t wake me…

  6. Here’s a link to the song in case you are interested… Yours, Pam

  7. Hi I nominated you for the The Inspirational Blogger Award! here is the link http://merandaroben.wordpress.com/2014/05/09/the-inspirational-blogger-award/

  8. wow- I’ve never heard the song before, but i totally get it. And can totally relate to your sleep issues. I stay up until I am running on pure exhaustion and have no choice but to sleep but once I get there I feel like I could stay in bed forever! This routine really doesn’t work as well with the IBD because as you say, you need a nap every few hours.
    Now I have to go to youtube and add this song to my music list…!

    • It’s actually not one of my favorite songs–in general I find Carly Simon slightly annoying. But my mother loves her, so I listened to a lot of her music growing up.

      I’m glad I’m not the only IBD’er with serious fatigue. I see all these IBD’ers who run marathons and crap, and I feel like I must just be making it up. If they can do it, why can’t I? I used to run (not marathons, but 5K’s and stuff) and do martial arts, but I’ve had to give all of that up because I just can’t do it anymore, physically. The fatigue is too bad. And everyone’s like, “Oh, just take iron and a B-complex and you’ll be fine!” Well, I take both and still need a nap every four hours or so.

      • I totally get the sleep/fatigue issues. And they are different, you can be sleepy without being tired…and so tired you can’t sleep, at least that is how i feel. I was diagnosed about three times with narcolepsy, but for many years the psychiatrists treated me like shit, a drug-seeking manipulative so and so who just wanted her fix of stimulants. So they would give me my “treat” in return for my taking their antipsychotics! Then finally i met a sleep specialist/psychiatrist who said she was treating two different conditions, but would never make treatment for narcolepsy conditional on whether i took treatment for schizophrenia…wow! What a breath of fresh air. Things soured later on, but ever since then i have insisted on this.

        I also had neurological lyme disease, with demyelination of some nerves. So i could scarcely make it up a single flight of stairs before my legs simply gave out on me, i could not even stroke a cat because my hands would just collapse. If my sister hadnt persisted on getting the lyme dx and treatment with antibiotics, i would have been left with an MS diagnosis, and much worse off for it. Luckily the .ABs helped and my muscle strength is much improved.

        But without Ritalin i would sleep on and off all day…literally, and never feel properly alert, except in patches of five minutes at a time, unless i walked all day long. I used to walk 14 miles a day, while studying, as it was, pre-Ritalin days, the only way i could stay awake and study, from flashcards. So sleep is an ambivalent thing for me. I know i need it, and it is good for me, but i resent it too. Because it is so involuntary and could come over me at any time.

        Sorry to go on and on….TMI, i know. Anyhow, my friends son had the UC surgery not too long ago, and i would be happy to ask her how he made the decision and why. Would you like me to find out some things?

        Pam

      • Yeah, it tools years of psychiatrists blaming my sleep issues on depression before anyone sent me to a sleep specialist. Ridiculous!

        I’m pretty well informed about j-pouch and ostomy surgeries. My curiosity is more about whether my doc would actually go with it, since technically my disease isn’t severe right now.

      • Eek! I hate to think just how disabling “severe” disease would be, given the constraints on your activity already, but i get your point. My friend’s son didnt want surgery for years, fearing he would never find a girlfriend. Hah! The very first thing that happened to him was, wow! a girlfriend, amazingly enough. Dunno how it happened to work out so well but she just doesnt care, ostomy or no ostomy…i think she wouldnt have cared to begin with but B was too caught up in UC to realize she was out there.

      • Severe disease=me almost dead and in such constant, excruciating pain that I wished I were. My blood pressure was down to 50/40, and they had a crash cart in my room. I spent entire nights on the toilet, and I was crapping nothing but blood, lots of it.

      • At the risk of making a bad pun, holy shit…I guess I don’t really know nuttin’ about UC in all its dreadful manifestations. Having a BP of 50/40 makes you feel like death warmed over just by itself. I can scarcely imagine the rest…I hope you do not have to get so bad that they need to use that crash cart, and then think, okay it’s time to do surgery…That would be kinda, whoops, ass backwards no? Anyhow, I see what you’re saying. “Merely” pooping in the bed seems “moderate” compared to that, yes.

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