Painsomnia – Tick tock, tick tock, the clock keeps moving…

 

My mind won’t stop working.

Tick, tock, tick, tock…many nights I just can’t sleep and the only companion I have is the clock and a teddy bear. Teddy doesn’t talk and I can’t get the clock to “SHUT UP”. I know, it’s just my brain trying to work things out but still I AM AWAKE. Sometimes it good because friends text late at night, or I can be online with my Twitter and facebook buddies.  Other times it’s hard because I have to get up early for an activity with my daughter and I really need the energy.

Where are my Spoons!!??

Yesterday, energy I didn’t have, I spent with her. I didn’t want her to perceive her life as lacking a mother. Yet, today I’m here right here and my body is too tired to move. I have to pay the price of overuse. How many days will it take? Could I have planned better? I sometimes call them “scheduled crash landings”, when you know in your heart that your pushing yourself but you do it anyway because it is worth it. You make the choice to do something today that you will pay for it tomorrow. But of course tomorrow when you are depleted of any energy whatsoever, you are left questioning those exact choices while you lay in bed.  Crap, brain shut down, let me sleep.

spoonclock6 A.M. My daughter gets up in two hours for camp. I can do it. No I can’t. Yes I can. Brain SHUT UUUPPP!! Let me rest a little longer. The damn clock is still ticking and teddy still grins. What do they know that I don’t? I know my dad will get up for her, but I wanted to do it. I am her mother. It is my responsibility. It is supposed to be my special morning time with my daughter. All these thoughts cycle and run through my head. I must do something. I know I’ll tend her hair and put braids and bows. People now expect her to have the cutest hairstyles, because on my good days I am “mom of the year”. On bad days I use everything I have to keep up with my own act. I will then send her down to the kitchen for breakfast. Good that’s solved. Now can I rest? Tick, tock, tick tock.

“Mommy, are you up yet?” Oh crap! I just fell asleep and she is up. I swear just two minutes more. Please, please, please. “Mommy, fix my hair!”  I did sit up and she slid up to the side of the bed. I fixed her hair just like she wanted, she left the room and I fell back on the pillow. Tick, tock, tick, tock… please let me sleep for a few minutes more.

Tick tock, tick tock, the clock keeps moving… but today I do not.

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook. 

©2024butyoudontlooksick.com
  • Anthony Turtle

    First the “Spoon Theory” and it applies to more than just Lupus, ME/CFS, but so many pain and fatigue related illnesses. Now a new word to describe our nights of crying for sleep and fighting the pain. Thank you Christine.

  • Chris Blume

    I think we might have written the same thing at the same time so funny I was reading this and was like wow she took inspiration from me. rofl 😛 https://www.facebook.com/notes/chris-blume/commotion-coma-by-christopher-blume-82914/10152261592202407/

  • Jodie Beare

    Painsomnia is perhaps the best word I’ve heard in years. Thank you for allowing me to add this to my vocabulary (on the days I can remember it!). I’ve spent so many nights, all night, lying in bed wishing my brain would shut down WHERE IS THE SHUT DOWN BUTTON?!?! I have M.E. and various accompaniments, so my sleep schedule likes to flip-flop, but I can’t even sleep during the day, so I find myself in zombie torture mode sometimes. I don’t know what I would do with a child; raising a husband is hard enough. All the love and spoons to you.

  • Henry Nancy

    I am here to testify to the good work of Dr. Olokum. 4 years ago, my husband left home, he never returned, no phone calls, no letters, no emails, no sign of him anywhere. My daughter got sick with multiple sclerosis, things were so hard for me. I had lost hope, 2 years ago, I met a psychic told me it would help me, I paid over 500 and still nothing happened, I lost hope. completely, my daughters situation worsened day.last each month, I saw an ad on the good.works all professionals, I gave them a try? I ordered three spells (Bring Lover. back Healing spell and Career spells). Within weeks, my husband called me and told me it was. sorry and wants to get back to me and that he would explain everything when I get back, three days later, I got a new job with a company of loans and finance, at this time, the condition of my daughter ?? s is.getting better every day and I hope it would be fine in a matter of days.I want to thank, [email protected] for their efforts and for bringing my life back to normal and so close.

  • Lacri

    You put into words how I feel every morning, so eloquently where I cannot! Having fibro/cfs and insomnia is a nightmare, I am currently experiencing one of those “scheduled crashes” but it’s on the back of a major flare. I’m now 10 days in and only 30 minutes sleep so far!
    I have vowed to keep clocks OUT of the bedroom, now I only have my phone and its trusty alarms tucked neatly under my pillow. I don’t need to know what the time is until I have to get out of bed. I find it helps. A little!

  • Janine Hoare

    I really know exactly what you mean about trying to do things & then crashing out.I have MS (diagnosed 1992) but I have suffered from insomnia. since early childhood.Even if I manage to sleep battling fatigue is a constant thing.I have two children & now that they are older I do not see them in the mornings which I feel incredibly guilty about.On the plus side we enjoy our afternoons & evenings together when their dad tends to be v.tired(not surprisingly).Just wanted to say how well your article expressed the difficulties of being a parent with a chronic disease.

  • Cherie Kasper

    I have done this for 46 years now, I know exactly what you are talking about and have been through all that you are talking about, kids and grandkids. What’s hardest for me is when people think there’s nothing wrong with me, you know, the ‘invisible disease”. They even think I take to much medicine, for me, sometimes, it’s not enough.

  • sunnyskys

    They do grow up so fast.

  • Karen

    My 6 year old granddaughter lives with me. I try to explain to her that grandma is sick and tired and can’t go to the park and play in the heat everyday. Of course, it breaks my heart to disappoint her. But I try to spend as much quality time with her as possible. Yes, I am always exhausted. But she was grow up before I know it so it is worth the pain now to see her smile.

  • Rachel Earnest

    “Scheduled Crash Landings” – you phrased that perfectly. BF and I recently went to Jamaica for a week. I kept myself going strong for that whole week by planning well, taking it easy, not over burdening myself, and taking lots of pain medication, but i warned him and myself that once we got home there were probably going to be 4 or 5 days where I just wasn’t going to leave the couch and we both just had to accept that that was part of the price of our vacation.

  • Michelle

    OMG! I have been dealing with this for the past month (most recent episodes) . My mind won’t stop, not even if I take all the meds in the world. The pain is insane …. thank you for saying the words that I could not.

    I finally found a website when I was thinking that parachuting out of a plane might help with my PTSD … when I googled it …. a much different website came up. It was some forum about parachuting Xanax. You place it under your tongue to melt, taste is awful, and then drink grapefruit juice. I fell asleep within minutes.

  • sunnyskys

    This is one that I am struggling with right now with my grandchildren. I want to be the fun grandparent, but as my grandchildren live 2-3 hours away, I am exausted just dealing with the drive alone. 3 hours one way is too much for one day. 2 hours is a little better, except, they don’t drive to my house. I have to pick them up and drive home for 4 hours of driving even before we start having fun at grandma’s! Pick them up Friday night, play on Saturday, take them home on Sunday and I am exhausted for days or longer. Then the rest of my life suffers. (work, chores, animals etc..) Their mom (stepdaughter) gets mad if I don’t get them, I am exhausted if I do. I miss out on so many parts of their life if I don’t get them and I miss out on my life if I do. Either way the feelings of guilt and sadness are sometimes overwhelming. Even though I have been struggling with this disease for 5 years, it is still hard for me to accept that I can’t do it all, unless I want to crash land on my bed for several days. How do you explain to a 5 year old that ‘grandma is just too tired to come get you’?

  • thisbearbites

    New phrase for my life. “Scheduled crash landing” can cost more than the flight. By pushing so far, usually so I don’t disappoint those I love.
    I usually try to tell myself, I will be better in a few hours, perhaps after a night of rest. But rest doesn’t come when you are paying in pain – “painsomnia”.
    A few hours is usually a day if I am truthful with myself. Sometimes a few hours turns into a few days if pain is the victor.
    My children were young when pain became my lifestyle. They are now grown and have children of their own.
    I find I am still fighting the same battles, struggling to be the type of grandparent I want to be to my grandchildren.
    Spend one day being a fun grandparent, rest for two to overcome my scheduled crash landing. Everything has a price to pay, for us in pain. Even love.

  • Carol

    Been there; done that. It’s a bit better now that I’m older and kids are away. I empathize.

  • Teresa

    I have always hated those mornings and, with MS, I have had them all too often. The “scheduled crash landings” always hurt and “just a few minutes more” is never enough. Going to bed for a 24 hours is just shy of impossible when you’re “Mommy,” “Mom” or “Ma” and, as the years go by and the name that they call out to us changes, our guilt piles up.
    Now my daughter is an adult, she gets it me and my MS the way no one else does. She takes it all in stride. Some days are better than others, some recoveries come relatively quickly and some don’t come at all.
    When I can’t find my cane, she finds it for me, even if finding it means driving back to the parking lot when I left it standing all alone in the grocery store parking lot. When I cannot retrieve a word, she patiently waits until I insert whatever word seems right and, somehow, interprets what I meant, continuing the conversation as if I used the word that I couldn’t retrieve AND does it easily, without cracking a grin at the misnomers that I substitute. Sometimes, I’m the one who laughs later on when the correct word appears, out of nowhere, and appropriate to nothing.
    Our children, well, they adapt to our normal, however inadequate we know our illnesses make us. They love us, as we love them, un-diminished-ly, even when we aren’t as well as we appear to be.