Being nocturnal has its advantages. Like the serenity of knowing everyone else is asleep… it’s so quiet that I can hear the crackling, of my now arthritis ridden neck. It harmoniously plays along with the light but constant ringing in my ears. Oh how I appreciate the silence of night. Although I’ll never know the pure sound of still air ever again, I happily appreciate the absence of day to day noises during my sleepless nights. My Circadian rhythm is backwards, always has been, so I’ve learned to take advantage of this small window of peacefulness.
Trying to sleep during the day has its disadvantages… always being awoken by someone else stirring throughout the house. What may seem normal to others, can rip me from my precious few hours of sleep, leaving me with a headache on occasions. I can’t blame anyone really, it’s my issue, I should be used to it. But, I never truly am, and it can weigh on me.
The only thing that keeps me sane is my alone time… contemplating my wants for our future, needing to feel purposeful, and hoping that I can accomplish all that I hope to, before Fibro, Rheumatoid arthritis, etc., claim every second of my life. Right now I’m as good as I can be considering, and I need to stay ahead of what’s waiting for me, for as long as I am still able to fight it. We are truly warriors… against our own bodies yes, but that doesn’t make the fight any less important. We need to stay united in our struggle to spread awareness, so that our lives won’t be filled with the usual drama of someone we know or love, leaving us feeling less than human. And most of all to find a cure for this dammed disorder/disease/syndrome/illness, whatever you want to call it… it needs to be extinguished!
I choose to stay positive. Yes, it is a choice, yet not an easy one. I work hard at it. To the average person, I probably seem pretty upbeat, happy, not sick at all. Little do they know what’s hiding underneath that smile. And that’s ok with me more often than not. Sure, it makes it more difficult for people to believe me, but I enjoy being treated like everyone else, instead of seeing the sorrowful faces that you’d get if they knew how awful you truly felt. I’m aware not everyone feels that way about this… and that’s their choice of course.
I know that being happy means I have to try everyday, to see the brightside of each diagnosis I receive, every flare day I endure, and any misconceptions someone may have as to how ill I actually am. I find that happiness deep down within myself, when I wake up each day. It’s buried in the beyond… and it does take a moment to find, but I know what my day would look like on the other side of that coin, if I didn’t.
So I get up, have my tea and a small bite to eat, take my medication(s), and start my day; by figuring out what I could do today, to help someone else. Someone that has just received their diagnosis, for example. I recall vividly, how hard that day and coming months were… and if I could just take some of that pain away for them, then I’ve accomplished something good!
I think about each thing we share… the podcast/blog/vlog and occasional articles on our Facebook page, and how it may enlighten and ultimately help another family member of a Fibro sufferer, but most of all how it can allow our fellow Fibro Warriors to feel understood, loved, and less alone. This is what drives me! I have never felt this proud of myself. Can I say that without sounding narcissistic?
Seriously, having the amazing crew that I have with me, is why I’m able to see this journey through! To help others and spread Fibromyalgia awareness is my purpose. If we can make one person a day smile, one person a day feel understood, one person a day feel loved, then we are doing this right!
Everyday I’m consumed by this need, and when I’m feeling less than ok, I worry that I may fail someone. I know that’s a lot of pressure to put on myself, but I’m unable to let myself fail… not in this!
So maybe this is why I’m so comfortable in my “Nocturnal Bliss”, because I’m free from the stress of my (late) days, able to indulge in a good movie or book, and even write a blog if I’d like, uninterrupted and carefree, for the moment. See, you can find the positive in anything, if you really want to. Good morning for you, goodnight for me!
You are not alone! Love you all 💜💋MJ
FIBRO Warrior, My New Normal: