Mundane Mundanes, Vol. XIX: So Here's What's Wrong With Me

Monday, May 12, 2014

Here's a picture of my cat freaking out, which hopefully makes this somber post much more entertaining.

Good day, readers!

This post has been a long time coming. If you've been a long time reader (or an observant new reader), you'll have noticed that I haven't been super well for quite a while. Today, being International Awareness Day for Myalgic Encephalopathy/Chronic Fatigue Syndrome and Fibromyalgia, seemed as good of a day as any for a little explanation.

There's not a super great understanding of what fibromyalgia is and truthfully haven been diagnosed with it fairly recently, I'm not as knowledgeable as I could be (click here to read and stuff). It's characterized as having symptoms of chronic pain (varying in intensity, type of pain and duration) as well as fatigue and insomnia. However FM has been my unknown and unwelcome companion for years and I can tell you what it's been like. I could go on at length about what it has been like, but I'll try to keep it short (unless you REALLY want to know).

My time spent with various doctors and specialists have opened my eyes to some awful and painful diseases and disorders as they were ruled out in my case. I'm oddly thankful that fibromyalgia will hurt me but ultimately it will not kill me. The symptoms, I am assured, can be managed.

Am I managing it well? Er, no, I'm not.

I've read a lot of message boards and what not where it seems like many people are able to lead normal, productive lives. Yeah, I'm not one of them right now. I sure wish I was. In the last six months, pain has even marked my face. Despite my best efforts, my brow is becoming permanently furrowed (that's permanent bitch-face for the lay person), looking back on pictures taken from a year ago, I think that I look remarkably carefree in comparison. Nowadays, I usually have three kinds of days:

Worst Day:
It's mostly spent in bed. I'll trash around and cry, but this crying isn't emotional. I cry because it just hurts so, so bad, relentless in almost every part of my body. I would scream, but I sometimes vaguely remember that it won't do any good. The best thing that can happen to me is that I'll manage to lose consciousness and the pain won't be as intense when I drift back awake, not quite the same as just plain falling asleep. Sometimes it gets so bad that I can't be touched. Caressing my shoulder or holding my hand feels unbearable, like prodding or squeezing deeply bruised flesh. Getting up to walk all ten feet to the bathroom is difficult, every step there feels like a gauntlet of physical punishment so I find that I avoid eating or drinking so I won't have to go (sobering experience, as in our culture being able to go the bathroom with oneself is a hallmark of a functional person). On my worst days, I'll bitterly wish that every single one of you could feel it, to know and to confirm that this pain isn't made up in my head, that I'm not crazy. I'm barely aware what day of the week it is, what the weather is like outdoors and whether it is night or day.

Bad Day:
Tired, so tired. I usually succeed in not napping but other than relying on medication, there's no way to lessen the insomnia (meditation, progressive muscle relaxation, etc hasn't done me much good). The pain and weariness is tolerable (in the loosest definition of the word) but I'm not able to do too much. I read, I blog but anything physical is really difficult. On one of the bad days recently, I was profoundly upset by how tiring it was to open a drawer. These days are more emotional, I find myself ashamed that I can't clean and keep our place as tidy as it could be and that I can't exercise as much as I'd like to combat the tendency to be heavier because of PCOS (read: oh man, have I put on weight lately! Ack). I also can't help but think about how off track I am from my career goals. I'm so stiff in the morning that I know I'm not capable of driving safely (which is highly isolating).

Good Day:
Other than a little stiffness and aches that come and go throughout the day, these days aren't bad at all! These are high functioning days where I catch up on housework, where I can walk a block or two. I attempt that blasted yoga, which I find aggravating but is supposed to help. I relish time spent with friends, enjoy cooking or dates out with Morgan. On days like this, it's easy to marvel at the blue skies, appreciate new things and let my mind explore new ideas. The world is once again interesting and extraordinary, I have the luxury of being hopeful and optimistic again.When it's a good day, I can't believe that I had ever wished FM on anyone.

Unfortunately these good days have been far and wide between. When I push myself to do more than I can't handle, I essentially am stealing energy and strength from my good days and setting myself up for bad and worst days later on.

There is just two things that I'd like you to take away and one notion is that not everyone is as healthy as they appear to be. What looks like a healthy adult or child to you could very well be someone who is struggling; whether it be a physical illness that perhaps isn't visible to you or an illness of the mental variety. Also, if you every feel like something isn't right with your body, don't let anyone convince you that your health is negligible. Pain is pain.