From urban dictionary- Lack of sleep or inability to obtain sufficient sleep due to physical suffering or distress, especially when chronic. These killer headaches are causing me to have serious painsomnia; I haven't slept well in days.
Getting a good nights sleep is one of my greatest struggles. I've never been a great sleeper. I've always been sensitive to noise and bare minimum I need eight hours of sleep just to function. Along came Lyme Disease and Fibromyalgia and suddenly I can't sleep even in ideal conditions. I have tried many many drugs and they do very little. I can take four Benadryl and be completely fine. I can take over the counter sleeping pills and they won't even make me drowsy. I've tried prescription sleeping pills and they helped a little, but my insurance refuses to cover the one kind that sort of worked (generic Lunesta). I haven't gone to battle with them over it because Lunesta only worked about two nights a week, leaving me sleep deprived for the other five. Not worth the months long battle I'd have to put up to get them to cover it.
As if all my sleeping problems weren't enough, pain is another variable that is part of the mix. I am lucky that I have access to some pain killers, but I use them very rarely because they make me feel terrible. The pain has to get fairly intense before I will take anything. So often times I will try to go to bed and my body will refuse to let me sleep. I'll lay there and lay there and all I will think about is how much my body hurts. It feels like my body is screaming in pain, and nobody can sleep under those conditions. When I get so tired I feel like I'm going to die of sleep deprivation, I will take a pain killer. Unfortunately the pain killers only dull the pain slightly and have the side effect of making me unbearably itchy. So there I am not feeling like the pain is going to kill me, but itching so badly I can't stop thinking about it. Inevitably I end up getting about four to five hours of sleep, which is better than it would be otherwise, but still not enough. Painsomnia is a bitch.
Insomnia is bad enough. but when it's accompanied by horrible pain it makes it even worse. When I'm sleeping it is the only time I am free of pain. My body gets so tense from being in pain all the time, and sleep is the only time it has to relax. When I don't sleep it creates this horrible feedback loop
pain ----> insomnia ----> more pain ----> more insomnia = PAINSOMNIA!
I can never get enough sleep. I would give anything to just be able to lie down and go to sleep like a normal person. It doesn't help that my husband is practically narcoleptic. He sits down in a chair and is asleep 20 seconds later. I'm drugged to the max in a comfortable bed and it still takes me four hours to get to sleep. Sometimes I get so mad at him for being able to fall asleep like that (I know it's not rational, but I'm not rational when sleep deprived). I've tried all the natural options and... nothing. I've tried the medical options and...nothing. Painsomnia will be the death of me.
Check out #painsomnia on twitter, I'm not the only one!
Check out #painsomnia on twitter, I'm not the only one!
Dear Chronic Mama, I found your blog after searching (ok- somewhat desperately) for another chronically ill mama I could relate to. Upon finding your blog, I admit to reading it for hours this morning (this is one of my bad days). I could have written so much of it myself- word for word. It helps to know that there are other mamas out there that understand what it is to deal with this daily and maybe forever. I have a six year old and a three year old, and like you I find myself wishing I could do and be what I was at one time for them. Please know that I very much appreciate your blog, and the great sense of humor you have in describing many situations I understand all to well. You have my utmost empathy and my prayers.
ReplyDeleteI typed up a long reply to you DragonFly and then google deleted it so here's take two that's much shorter than the original. Thank you so much for your comment, it totally made my day. I started my blog because I couldn't find many out there that talked about parenting and being sick. Parenting while sick is a totally different ballgame than just being sick, so I'm glad you found me! I hate hearing about people being sick but it's also so nice to know I'm not alone in the situation.
DeleteI can identify with absolutely everything in your post! I've had insomnia my entire life, but at this point, I can't sleep at all. I was given a muscle relaxer for neurological problems that finally could knock me out.
ReplyDeleteThe doctors all think that the inability to sleep is just a symptom of a problem that another doctor treats, but I think it is its own problem. I mean, when all of the medications for sleep, other than Tizanidine, are like taking a sugar pill, I have a real problem.
And it makes the pain worse and then the wore pain makes sleeping hard, just like you said! Thank you for putting into words exactly what I feel! (My husband sleeps the same way that your's does!)