It is 5am. It’s a horrible, ugly hour to wake up, not yet morning, not quite night. Painsomnia?

 

It is 5am. I can’t sleep. We have been here before, me and insomnia. It is a date, we know each other well, but I wish I didn’t. As many times as I am at night,and can’t fall asleep… you never get used to it.

It’s a horrible, ugly hour to wake up, not yet morning, not quite night. Nobody plans to be awake at this hour, unless they have no choice. I can see the darkness fade into light outside my window and it starts the tidal wave of negative thoughts and fears in my head. Why now? Will I get up for work on time? What if I oversleep? How can I fall back to sleep? What will happen this time?


I am shocked out of my sleep by the loss of breath. I anxiously gasp for another breath and it feels as though someone has punched me hard in the chest and I have a loss of air. This is the most startling way anyone could ever wake up. I wake up pulling for air as if a heavy brick is sitting on my chest, and the weight is unbearable. My lungs feel tight, exhausted, and tense, and for a brief moment I actually think I could die. Although it is a brief moment it is amazing how many morbid thoughts can fit into a few seconds. You think of death and dying, who you would leave behind, and how it would happen. I think of my own funeral often in these moments. I know in my calmer moments that this is not a realistic line of thought, but at 5am your mind goes places it probably shouldn’t. I am alone. What if I can’t pull that next breath of air in? I am scared, but this has become part of the routine. It is amazing what becomes normal to you if it happens often enough. No one should consider these thoughts and feelings normal.

I try to tell myself to calm down, lean forward, and relax. I repeat the word relax, over and over, until it becomes a mantra. This doesn’t help. I try to focus on my breathing. I feel silly like I am doing Lamaze without being pregnant. With every breath I take I feel my heart beat a little bit faster. I think I may have a fever; I am hot, sweaty and cold at the same time. I feel clammy and wet and I hate that feeling. Feeling gross, I want to peel my own skin off and shed anything that feels uncomfortable. I pull the blankets on and cuddle up for some sort of comfort, but I end up kicking them off a few minutes later in a fit of rage from being stuffy and too hot. I can’t find comfort and I get angry at myself, at life, at this disease. I pull air in as if I am sucking through a straw. My body and muscles feel like they are in a spasm. I am shaking. I am scared. I am alone. I could have a house full of people, a roommate, or someone I love sharing my bed, but in this instant I am alone in the dark. No one is awake to help me, nor could they even if they were. I can say with confidence that I am loved, but that doesn’t help when no one can help you, and everyone has tried. I don’t want to wake anyone up; they have their own lives that they cannot be late for in a few more hours. I don’t need anyone staring at me making me more conscious of how sick I have become. They mean well, but it is best I am alone. No one can help me and having anyone try gets embarrassing and futile. I feel more guilty and sad when they are trying, then for myself. It is the worst feeling in the world to feel scared and alone, sitting in a house filled with people who love you.

 
I feel like I am drowning, and I can’t catch my breath. I feel as though every muscle across my chest is black and blue, but the evidence of that is not visible. My body feels achy and cold. My bones are rubbing against each other and I can feel it in every joint. I never knew everything could hurt even your pinky finger, but it can and does. I feel like there is no lubrication, nothing to help my joints move freely and easily. If this pain had a sound, I could only imagine it to sound like metal rubbing against metal, loud, painful and screeching. I am so tired I can barely keep my eyes open, but pain doesn’t allow me to have rest. My eyes lids flutter and tear with exhaustion. I try to stretch my limbs in hopes that it would hint at my muscles to relax. I feel like I am pulling tight plastic rubber bands and everything is sore. I sit up, curl my knees up to my chest, wrap my arms around my legs, and slowly rock back and forth. I find comfort in the motion as I try to rock myself back to sleep. I have become my own mother, trying to give myself an ounce of sweet calm. I focus on each breath, trying to make each one count, letting the oxygen get nice and deep into my lungs. It hurts to do so, but I push myself knowing it is best.
Finally, I feel the shaking cease and the tremors are slowing down. My body seems to have given up and I am exhausted. I practically crawl to the bathroom grasping at every door jam or piece of furniture to hold myself up. I feel old; my body is not working, as a young person’s should. I feel eighty-five years old, like I should have a cane or a walker. If I close my eyes, I picture a gray haired women wrinkled, and hunched over. I am not that women, but I feel as though I know her well. I desperately look for the pills I despise, knowing that they are the only way for me to sleep soundly and be safe. I swallow them slowly giving myself a nice gulp of water with each one. My throat is tight from this breathing ordeal and I can feel each pill slowly, tightly slide down my throat. I hate the growing anticipation that one may get stuck, but thankfully it never happens.
Next I head towards the kitchen knowing if I don’t eat something, even crackers, that I will be up in another hour with my stomach in knots. I just took an arsenal of pills, and I need to coat my stomach for the war. I grab crackers and milk, the sick persons meal of choice and head back to bed. Although I already feel nauseous and way too tired to even attempt to eat, I force the crackers into my mouth. I have learned to talk myself into eating when I don’t want to. I hate the salty taste of crackers. They remind me of only one thing and that is violently throwing up. I usually eat them to avoid throwing up, but many times it doesn’t help. Now I associate the taste with that ugly action.
My body is still recovering as I can still feel my heart beat erratically. It is amazing how well you get to know your own body when being sick becomes your full time job. You learn to pay attention to the signals, and hints of possible problems. I have become a detective with my own symptoms, trying to decipher what each one means. I can feel each beat, each breath, and each sigh and I am scared.
I am not an overly religious person, but you get desperate at this hour of the morning. I begin to pray. I don’t know how to pray and I am not sure I am doing it right. I plead and beg with a God I’m embarrassed I barely know. I have been angry at times at the exact God I am asking a favor from. Will he forgive me for cursing him for the pain I have been in? I try to make deals and talk my way into a miracle. I offer up possessions I don’t have, for a breath of air I want so badly. I would give up anything to make this go away. My brain starts to list off all the things I thought were important; cars, clothes, gadgets, and I realize that I would turn them all in, for one sweet taste of calm air. I want to breath without trying. I want to close my eyes without tears. I want to sleep without fear. I hope this is over soon. Over an hour has passed and I can start to see the sun rise. Dark midnight purple evolves into light pinky sky blue. I used to love the light peeking through the clouds, but now it just reminds me of the loss of night and beginning of a day I am not prepared to face. I am overwhelmed before the day even starts. I feel as though I have failed before I even begin.

Exhaustion wins in the battle over pain. I never remember how I fell asleep; I just wake up thankful that I did, and ready to start a new day. I am always amazed how at some point my head found the pillow and my body released enough to unravel and lay flat. The only evidence of this nightly ordeal is my twisted blankets and my lack of sleep. My face is tired, my soul is weary but I am happy to be breathing.

Today is a new day to try again, a fresh start. I guess that is the beautiful thing about life… tomorrow you get a second chance to hopefully have sweet dreams.
Essay written by Christine Miserandino, butyoudontlooksick.com

©2010 butyoudontlooksick.com
  • Cathy

    Thank you for writing this. it is so true

  • Sasha

    It’s 2:30 am and as I prepare for another sleepless night – my fourth in the past 7 days – I came across this article, and it made me weep for its truth. My latest insomniac pattern has me almost completely paralyzed. I only sleep every other night. Whether it’s the pain that keeps me awake, or the heavy weight of anxiety, the WHY? doesn’t matter much to me, anymore. It’s the ensuing inability to think straight, to have the energy to make and keep important appointments, to do the little amount of exercise that I can handle which is critical to maintaining the little movement I have left, and to even think beyond the next horrific lonely, dark, sleepless hours in my future. Thanks for articulating what plagues so many of us…wish there was a chat room for insomniacs to support each other through the 4:00 AM freakouts…if anyone knows of such a thing, I’d be so grateful…sweet dreams to all you that can actually sleep…you don’t know how lucky you are…

  • ROBIN

    WOW!! Never has it been wrote so clearer! :(

  • Cindy

    So many nights I’ve lain awake in pain – or simply awake and cannot sleep, cannot get up and do anything useful or wake up the whole house. Then work all day and the more tired you get the harder it is to sleep. And if I take a pain pill, THAT keeps me even more awake (stupid, isn’t it?) People who sleep fine will NEVER understand. Wishing there were beds made of jello that could suspend you weightlessly without any pressure anywhere. How many pillows I own – trying to find the “perfect” one. Sleep CDs, mattress pads, aromatherapy, yoga….. the list goes on…

  • Wendy

    It’s so true. Because you don’t look like you’re dying, and because you manage to get through the day carrying on as normal (at least to everyone else’s judgment) … no one would believe you are sick.

    I find the worst thoughts hit me late at night too when I can’t sleep. So thanks for sharing this.

  • Lucretia

    Why is it that so many of us with chronic pain illnesses which are supposedly ‘helped’ by getting enough sleep are also victims of insomnia?
    I think there must be a connection – but that doesn’t help at all, does it?

    You have my deepest, and sadly completely understanding, sympathy.

  • Patricia

    Thank you so much. I don’t sleep. I never re charge. I am always drained. My waking our is 1:30am or 2:00am every single day. I’ve tried everything and now hypnosis. It is mental torture. I’ve suffered from this for about 13 years. I am now almost 48. Sometimes I feel as though the life is being sucked out of me.

    I appreciate your every word. It makes me feel like I’m not alone. I shake and tremble and panic every single night. I fake it a lot. But sometimes it’s not so easy.

    Your honesty and sincerity is touching and brave.

    God Bless You.

  • Allison

    Like many who have commented before me “this is my life”. I think that just knowing that there are others out there going through the same thing makes me feel less alone. I have experienced this at least 2 times a week. What is the most aggravating I find it occurs often the same days that my joints are paining me the most. The next day is a write off and you are pushing you body to make the appointment you have had for weeks.
    The past few months are the best I have had for years and my sister wanted me to come visit. I did book my flight but I have been worrying how I am going to feel on the trip. My sister has SLE and has been in a remission period for a number of years so she knows what I’m going through.

  • Karen

    My heart cries for all of you in such terrible pain. I have pain, too. Although not as extreme as yours, it’s enough to wake me and to be part of my daily life.

    I’m a chronic insomniac and I’ve also had apnea and since childhood, which was not recognized at the time. I’m 63 and have only been treated for the last 15 years. The neurological damage that comes with this includes never, for so many years, feeling the least bit of refreshment from sleep at all. I get up at all hours, stiff, aching and as tired as I ever went to bed.

    My auto-immune liver disease and the fibromyalgia don’t show, but do add to the pain and horrible sleep difficulties. And the fatigue, mental and physical, leave me on life’s edges. Instead of anticipating what I can do in a day, it’s often what can I avoid and still be OK. What others see is an un-social, uninvolved person which the last way I to be.

    Oh, if only there were something – a pill, hypnosis, whatever – that would allow our sleep to be of reasonable duration and quality, to say nothing of good pain management! My best wishes to all of us.

  • Alonda Roberts

    I just recently was diagnosed with Lupus after 17 years of living with the symptoms. The doctors continually told me that it was all depression and PTSD. But with a lot of pressure began the testing for Lupus and lo and behold found it. I also have celiac disease, mitochondrial disease, and narcolepsy.
    Reading this article made me feel like I was not so alone. I always think that I am the only one feeling like this, but now realize that I am not. Thank you Christine for being “you” and postng things that make us all feel better about us. HUGS to you.

  • Dorita

    Oh my gosh – you have described the nights so very well. To wake up after only having been asleep 1 or 2 hours and to hurt so much that you can’t get comfortable to get back to sleep – it stinks! And then to try to carry on during the light of day as if nothing is wrong….. you totally understand! Thank you for saying it so well.

  • Carolyn

    Christine,

    Thank you for sharing about the struggle most of us who “don’t look sick” have at night! I have Fibro & will be tested for Lupus & RA next week! I have to say I dread the night more than any other part of my day! I used to think it was due to my body being used to working as a night nurse for 10 yrs., but after having 5 yrs. of exhaustion, I know this is something I’ll always deal with! I’ve tried Ambien, Lunesta, Benadryl, etc., & they only serve to make me exhausted & loopy, not rested!

    I don’t have the same breathing problems, but I felt what you wrote was coming straight from my life! It was incredible to read about you & others who hate 5 AM & struggle with the frustration & lonliness that time brings! I feel I’m missing so much with my family when my body finally succumbs to sleep at various parts of the day! An hour here, two hours there! I cannot remember the last time I slept more than 2 hrs. In a row without waking up crying in pain! Then to fall back to sleep, thinking it’s been hours, due to how stiff I am, & realize it’s been 15 minutes!

    I appreciiate what you do through this forum & pray you & all of those affected by “invisible illnesses” will find peace & comfort & relief somewhere in your day! Thanks!

    Carolyn

  • Jan

    Christine:
    I don’t have the breathing issues at least not to this point yet. What wakes me up is choking for whatever reason. And that comes with breathing issues as well.

    As soon as the choking stops and I can catch a breath, that is when I notice the quiet and the calm around me. That is when I notice the stillness outside the windows of the house and thank God for the morning, the fresh new start.

    The hardness time of day for me is before bed. Pain is greatest then and waiting for the pain pills to kick in literally so I can sleep. The time to go to sleep is the hardest and the most challenging. Will I stay asleep? For how long? How well will I sleep? Will I need more pain pills later in the night?

    Thanks for sharing this article. I appreciate you.

  • http://Butyoudon'tlooksick Kack

    Thanks for sharing, I have RA and Fibro and share in the sleepless nights & difficulty waking up in the morning. Hang in there we all care and are there with you. When I can’t sleep I wonder just how many others are awake also. Thanks again

  • Cori

    Christine,
    This is an AMAZING article. One that hits soooo close to my heart. I have so many nights like this.

  • Barbara

    I did indeed wake up at 5am this morning and groan-too early to get up. The cat played gymnastics throughout the room, enjoying himself, not aware I need my precious sleep.

    As far as yelling at God, you are not the first. I cringe at the things I have said to Him while in my worst pain or darkest moments. His love is unconditional.

    I have Lyme and the air hunger is the worst. I think sometimes I go into a panic worrying about the possibility of no air.

    Thanks for your honesty-it somehow allows me to not feel so alone.

  • Dottie Balin

    Christine,

    So very moving ! I could feel your every words. I also have been there at that time in the morning as well. Thank you for always sharing your words. It really hits home. My prayers are for all of us who suffer with some form of illness that we can understand and try to deal with our pain. Keep up the good work Christine…:)

    Dottie

  • Pam

    Wow, I have been experiencing “mornings” like that for about seven years and never knew that anyone else experienced the same thing. It is scary and I have been to the ER thinking I was having a heart attack. Not that it makes it any better but it does help me not feel so crazy to know that this is something that is from/because of the Lupus.

  • Maureen

    Others have already said it but I feel like I just read about myself. Though each of my doctors insists you can have insomnia if you have lupus! The breathing, the being hot and cold at the same time. The only thing worse then choking down soda crackers and milk because you just took meds is choking down gluten free anything and lactose free milk! I only wish no one else had to suffer at the same time feeling comfortated that I’m not alone…. Thanks yet again Christine.

  • http://butyoudontlooksick.com Sean

    I do not have any of these conditions, but my beautiful wife has Lupus and many other conditions. NO, I DO NOT UNDERSTAND WHAT YOU GUYS ARE GOING THORUGH, I NEVER TRUELY WILL! My wife has tried to explain her experiences to me, but, as an outsider and after reading these posts and comments, I never will really udnerstand. It hurts me to see my wife in so much pain, not being able to breath etc. It is frustrationg not to be able to help the one you love. I have been blessed with health – something I had taken for granted in the past. Reading these posts and comments helps me to understand. Christine does an outstanding job of articulating the devestating affects, physically, emotionally, mentally, spiritually and in all other forms. This fourm really helps we “OUTSIDERS” gain a miniscule amount of insight and understanding into what you guys are going through. I wish I could do something for you. I constantly pray that my wife would not have to go through what she goes through. I wish I could take it from her. I wish I could help her in some manner, but alas, I cannot. I just wanted to say from a family members perspective, we too hurt for you, we too are frusterated, we too are scared – scared that we might lose our loved one, scared when your loved one wakes up not able to breathe, or when your loved on wakes up out of a sound sleep because their muscles are severly cramping and the tears from that are streaming down their cheeks and they cannot find the breath to tell you what is wrong and how you can help – if helping is even a possibility. These diseases affect all persons associated with them. I am amazed how my wife can soldier on – no matter what. I do not know if I would have the strength of mind, soul, spirit, will or the determination, knowing what she will face on a daily, hourly basis, to continue on. My wife has recently gotten a Konji meaning strength – how appropriate. I do not know anyone else with more strength than she. I WOULD ALSO LIKE TO APPOLOGIZE TO HER FOR NOT BEING MORE UNDERSTANDING. BABY, I AM ETERNALLY SORRY FOR NOT SUPPORTING YOU MORE!!! We family memebers, no matter how much we may try, will just never understand what you guys go through. God Bless you in your plights!

  • Alice James

    Hi–5 am is my absolute worst time. I can’t tell if the meds I take to help me move make it worse but my imagination puts me in the dungeon…I can’t do this again. There is nothing to look forward to. And for God’s sakes, don’t look back. OR sideways at my friends’ full and happy lives. It seems my thoughts don’t know where to turn. And there’s no one to hug and says “it’s going to be okay and who cares if it’s not?” thanks for writing about this. Oh, I am also entangled with an apnea mask and a catheter bag and aching from rheumatoid arthritis. That’s why I wake up. Alice James

  • mary jo bafile

    i know all about being up at 4 a.m. because of the pain. just went through it last night, the night before that, and on and on. my arm’s throbbing, can’t take a pill, it’s too soon, i go sit on the lanai and smoke a cigarette and watch the sky and look out at the ocean wondering what it would be like to sleep straight through the night just once…with no pain. my eyes hurt so bad right now. can’t control the pain, wish i could stay in bed, wish for understanding from the pharmacy, wish i didn’t have to freakin deal with the pharmacy. wish for a couple hours peaceful sleep

  • Tammy Shannen

    Hey, thanx for sharing. Between the Fibro and the Asthma and the… everything else, I’ve had a lot of these early risings. I too refuse to wake anyone up. The only help anyone seems able to offer anymore is a trip to the ER – my insurance won’t cover it though and there isn’t anything that they can do either.
    Oh well, thanx for sharing your story, it helps to know that there are people out there who do truely understand what its like to have an invisible disease.
    HUGGLES!!! Hope that things are going better now.

  • Lynda smith

    Christine, you are an advocate for all of us who suffer in silence.
    Thank you for being her. I pray that some relief will be found for all people in pain everywhee.
    Lynda x

  • Mary Ann Thomson

    I hate the night, too. The pain gets so much worse when I am still for too long. I move fromour bed to my recliner. It helps some, but, not much.I am a 55 year old woman with rheumatoid arthritis and fibromyalgia.
    Morning comes and I am dragging, just trying to start the day. By 9 AM I need a nap. It is depressing. It makes me ache all over.
    But, there is one difference to my story. I am not religious either…. but, I DO have a relationship with Jesus. that makes a huge difference. I know He knows I hurt. I can turn to Him any time and have someone to talk to that understands undeserved pain. He hung on a cross. He understands.
    There is no “deal making” with God. Just boundless love. Keep talking to Him. get to know Him and invite Him into a permanent place in your heart.

  • Barb

    I felt like I was reading about my own life. I hate that others have to feel this each morning. It is scary and horrible. I only hope that eventually, the medical community will find a solution for us all.
    Barb

  • http://www.explore-oil-pastels-with-robert-sloan.com Robert Sloan

    Thank you for writing this. Nights like that wear down the strongest heart, by sharing this you’ve given heart to so many.
    *hugs*

  • Mimi Amos

    Thank you for writing and posting this. I’ve learned to hate my nights alone. I would rather fight my battles during the day, but this is like a peephole into my life: The part that I’m embarrassed to share. Embarrassed mainly because no one understands that it’s happening and just how frightening and uncomfortable it is. No one except someone who has been through it. I want to share this with my family, but won’t. You really did a great job of capturing “our” lives. Thank you for that.

  • Mary Alice Heath

    Caroline and Christine,
    I feel the same way. I am 51 y/o.
    I have taken prescription pain pills for days and I’m still in severe pain. This and the extreme fatigue wear on your heart and mind, is it really worth it all? I am hopefully waiting for the answer/cure. When I feel I can take no more, my soul is given the strength to endure another hour.
    Blessings!

  • http://www.explore-oil-pastels-with-robert-sloan.com Robert Sloan

    Christine, this essay is so moving. As I was reading it I was remembering bad nights I’ve had when I got pneumonia — and very grateful for the medications I have now that make my life a lot more tolerable after I’ve gotten them down.
    I don’t have the breathing problems you do, but your descriptions remind me what it’s been like whenever I got so weak that I’d catch bronchitis and then it’d turn into pneumonia. It always came after serious overexertion, dealing with a crisis like moving or too much stress in a household or extreme temperatures.
    You have me thanking the gods it’s not all the time. I know how bad that can feel and those thoughts that I’m dying come whenever that happens. It’s totally natural and not insane at all. If you can’t breathe, then yeah, you’re that close to the edge of death.
    You are loved and will be remembered well, you have been doing a lot to help others and we all do care about you and respect you. It’s not just pity for the sick or comforting, it’s respect. Keep fighting, you have the grit we all need to achieve.

  • Laura Turner

    This was so wonderfully written. To be able to put into words what we with Lupus go through almost everyday with this horrid disease. Sad to hear someone else going through this same thing, but comforting to know I am not the only one feeling this on a daily basis.
    My prayers are with you. Thanks again for writing this.

  • Carolina de Witte

    You have described it all perfectly. I am a 64 year-old woman who has been facing mornings like these for most of her life. The only ‘good’ news I have is; It won’t kill us all. Sad. Because I shouldn’t even SAY such things aloud, or set them down where others can see. But, this is ALSO part of our reality. ONLY SOME OF US won’t die. And so, I wait, holding on to life, waiting for the words that ‘there’s a cure’, and from now on NONE of us will die, at least not from this. Until then…I continue breathing.

  • Ashley PIckering

    Thank you for these words. I want to share them with EVERYONE I know, but am too embarrassed because then people would look at me differently. People don’t understand because I don’t look “sick”. I am tired of hiding behind my smile and my pockets – I put my hands in my pockets because of the pain they are always in.
    So, just – thank you. Your words mean a lot to me.

  • Jen Martin

    Christine,
    You amaze me. You are not alone. You’ve explained everything so well that it just gave me the goosebumps. **gentlehugs**