This morning on my way to the office, the group of DJs on one of the local radio stations that still insists on having a morning show (because who doesn’t love to listen to inane chatter at oh-dark-thirty in the morning before you can fully function?) turned their talk to Fibromyalgia. They didn’t seem to know what it was, given that one of them asked what it was and the others gave a collective, on air, “Fucked if we know,” reply. The general consensus reached was that it was “like, just being achey, right?” and “Well, it probably doesn’t exist anyway.”
Likely owing to caffeine deprivation, I refrained from punching my boyfriend’s stereo through the dash. This, folks, this right here is why I hesitate and hate, sometimes, to share that I have this thing. But it’s part of me, no matter how “healthy” I look, just like depression, diabetes, or autism is part of anyone else – no matter how disease or disability free they may appear to you.
It’s not, and I cannot stress this enough, “just, like, aches and pains.” I’ve spent nearly half my life in or working for the military, in jobs that were physical. I’ve done more than my share of manual labor and hard work and I can tell you now, I know what aches and pains are. What Fibro does to me quite transcends that. But although I cannot take the medication available for it, I still consider myself lucky among my fellow Fibro-Kids. What I don’t have are the myriad add-on diseases that tend to come with it. And for now, I can still work and usually function – as long as I’m meticulous about managing it.
Yes, I do manage it as best I can, and I have to do it without medical assistance due to the high rate of adverse events I get to experience on the medication. Yep – I tried. And failed. But that’s OK! The last year has been a journey and it’s one I don’t think I would have been nearly so successful on had I not discovered the world of Bullet Journaling, and the motivation that bloggers like Kara Benz of Boho Berry or Megan over at Page Flutter have given me. My typical day has changed so much in the last year, and it continues to evolve.
Why? Because one of the interesting things about Fibro is that it’s like dancing on the edge of a sword. At least, that’s how it feels in me. Individual results may vary. For me though, I find that if I do too much, I’m over the edge into flare-up territory (and if a flare-up is bad enough, I really can’t move for a while). If I do too little, hey look! Here we are again in that territory! What this really means is being meticulous about routine, habits, and tracking everything. For someone who would prefer spontaneity over habit, this…this was hard.
We’ll talk about the Bullet Journal another day, but what I will say right now is that I would be lost without it. And in my never ending quest for the perfect layouts and spreads to try online, I found that there was this community within that is totally dedicated to living a better life. Over time, with their inspiration and unknowing guidance, I’ve built a routine that I look forward to, even if it does mean getting up really early on a week day. I definitely can see and feel a difference physically and mentally when I fall away from that routine too.
The other thing I’ve learned is that I need to forgive myself more. With almost 20 years in military service, it’s really hard to undo a lot of what I “know”. Rather, it’s hard to let go of the negative aspects of that training and life while retaining the positive. I never had the ability to forgive myself for, as I would think of it, “being weak”. But I’m learning!
These days, my routine looks something like this:
+ Morning writing – Before I do anything besides stretch (that mummy stiffness is…it’s something), I sit down and get everything that’s cluttering my head out onto paper. Once it’s out, I feel a whole lot clearer. I recommend checking out Julia Cameron’s Morning Pages post if you want to learn more. Suffice to say, I can’t believe the difference this exercise makes.
+ Meditation – I’m really not a yoga or spiritual zen person, but I have to admit that taking just a couple of minutes after my morning pages to sit with my eyes closed and focus on deep breathing has made a world of difference in how I face the day.
+ Exercise – The interesting thing about Fibro is that it’s a damned-if-you-do, damned-if-you-don’t disease. I mentioned earlier that if I do too much or too little, I’m up a creek. That means walking more when it hurts, and making sure I move for a few minutes at least every hour. And exercise. Again, the difference between suffering through 20 minutes on a stationary bike or treadmill, or doing a low-impact, high calorie burn workout (I use my Fitstar app for this), or doing nothing at all, is clear to me.
+ Habit Tracking – Back to the Bullet Journal. I track the habits I need to keep up. Everything from sleep, to calorie intake, to exercise, to creative time (that’s really important for my mental well being). On the very next page, so I can see everything in one spread, I track my Fibro symptoms each day, and my mood. If I can see a pattern between doing or not doing something, and symptoms decreasing or increasing, then I can try new ways to keep the symptoms low, or at least have a good idea of what I’m doing right!
It’s important to me that I rule this, not the other way around. A key element of that is to ensure that I keep the depression that comes with it at arms length as best I can, and keep fit – again, as best I can. Mind/body connections when it comes to physical health are absolutely real, and I need to make sure that I treat both the way they need to be.
I know that not everything will work for everyone; that Fibro is different for everyone. I’ve offered a few ideas here to help if you’re at sea, but keep fighting, and finding what works best for you.
*Note: I receive nothing in return for sharing the links associated with this post. These links are not affiliate – they are only shared here as resources for those who are interested.