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
  • Daedra

    That describes everything I feel all the time. It’s painful to deal with these problems when I’m still in highschool. I’m 17 right now and I’ve been dealing with these problems since I was 13. It makes me happy that someone else knows exactly how it feels.

  • Abigail Hollis

    I finally feel like someone understands me and “gets” it. I have said a million times, it feels like I have the body of an 80 y/o and I’m only 35. I am glad I found this page, to have others who know how it feels to not want to complain, to muddle through the day, wake up more tired than the day before, and sometimes just feel like it takes every ounce to even breathe.

  • Kari

    Beautifully written. Thanks for sharing, i no longer feel so alone. Hugs❤️

  • westomoon

    Oh, boy, the wee hours are a dark time indeed. Sleep started failing me back when I was still working full-time (well, the lupus version) at a stressful job. I finally came up with something that helped me — when I was awake and feeling functional, I made audio tapes for myself for those times. I figured if I couldn’t sleep, rest would be a good second option, and to make that happen, I had to break the sort of feedback loop of panicky wee-hours despair that makes painsomnia even worse.

    I used the voice I’d use for tenderly talking to a sick child, and I recorded relaxation exercises, poems I like, even just pieces that in the light of day I found beautiful or comforting. It’s surprisingly effective to hear one’s own voice crooning to you in those darkest hours. These days, I also have a couple of audio books that are helpful — Wind in the Willows is a current favorite.

    I don’t know if this would work for everyone, but I’ve found that the “Super Orange” flavor of Emergen-C, those little packets that make a fizzy drink with Vitamin C and electrolytes, works very much like Rescue Remedy (from the health-food store). I’ve found both very steadying, and you can keep them on your bedside table and just add them to your bedside glass of water when needed. (I let the Emergen-C sit a few minutes until the fizz has gone.)

    Not to preach, but for me, a big piece of surviving painsomnia, and lupus in general, has been forgiving myself — and my body, and God, and fate, and genetics — for my lupus. Forgiving myself meant I could make little arrangements to make things easier for me, like I would if the disease had hit someone I love instead of me. There’s no reason why anyone should have to walk to the kitchen when they’re having a bad flare, for example — that’s why God made dorm fridges and air pots and fizzy vitamin drinks, IMO.