This morning I actually woke up, on my own, around 9:30. For me this is nothing short of a miracle! I know I may get some eye rolls and/or head shakes, but I have what many of my chronic-pain/TN buddies call “painsomnia”. It’s insomnia for us chronic-pain folk! I really thought I was going crazy (my hubby still thinks I am – lol) always being up super late, unable to fall asleep, feeling restless and agitated. I really thought that something (else) might be wrong with me. My schedule just manages to get more and more messed up! However, once I finally got into TN/chronic-pain support groups online, I discovered that it wasn’t just me! Yay! Normalization! I mean seriously!! These people get up late and are up half the night, even if it’s unplanned and/or unintended. You have no idea how great that made me feel. “You mean I’m not the only one who feels like I desperately need sleep, but I can’t ever get to sleep and still feel completely wiped even when I do sleep?!” How cool is normalization?! It’s one of the reasons support groups are so damn helpful! You finally get to talk to other people who understand, I mean truly and completely understand what you’re feeling. I’m not saying I don’t have people in my life who empathize, because I do. No. What I’m saying is people who are in almost the exact same situation. Because, let’s be real here. Nerve pain is super hard to describe to someone who has never experienced it! My hubby had shingles years ago (before I ever got sick) and to be 100% honest, I didn’t really “get” the pain that he was experiencing. By the way he was screaming out in pain, I could obviously tell it was bad, (because I have one of those stubborn guys who can be sicker than a dog, yet refuse to admit anything is wrong, until he ends up with pneumonia or, you know, shingles!!) so I knew it must be really awful, but I didn’t truly understand. We now actually say it’s a good thing he has had shingles, because he does “get” what nerve pain is like. He remembers how just a bed sheet brushing against his skin made him want to leap out of his skin in pain! He says that he can’t imagine what that would be like on your face, all the time!! (And, welcome to my life!) So, my hubby may not get the whole “painsomnia” thing, but there are people out there that do! Yay!! That helps me feel less alone during those nights when I lie there and just can’t, for the life of me sleep, with or without pain, regardless of how tired or plain exhausted I may be. He thinks if you’re A, then do B. So, if you’re tired, sleep! If you’re stomach feels nauseous, get sick. If you have horrible gas pains in your gut, fart! Etc Etc…The problem is, his “logic” is often too simple. Like, jeeze, if I could fart, don’t you think I bloody would?? Come on! I’m in pain, because the gas is so bad, if there was a simple solution, of course I’d do it! Well, the same is true with me and sleep. I mean who chooses “painsomnia”?? Obviously it isn’t a conscious choice or something I do for fun – lol!! I just really enjoy the fact that I’m not quite so much of an odd-ball after all (Hee Hee)!! So, after all this talk about sleep and insomnia, I’m going to head to bed and see how I do tonight! Generally I don’t sleep as well when I’m not at home, in my own bed. However, I’m so tired that I think I should fall asleep fairly easily tonight. I just hope it doesn’t shift into an up half the night thing tonight! But I’m starting to have a difficult time functioning and even keeping my eyes open. So, that’s a good sign I’d say. And I’m off to bed. Night all😘
To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”
“Hopefully one day I’ll get it right, or at least have fun, while about it I write!!”
