Rage is contagious

I’m not sure if it was from the cold weather, stress or some sort of cosmic retribution, but right after I posted “The Plan, update #8”, the pain set in. Oh the irony. I had literally just finished saying how my pain levels had gotten so much more manageable, blah, blah, blah and BAM! Next thing I know, it feels like a bunch of (evil) little gnomes are hitting the nerves in my left wrist with pickaxes. Seriously, that’s what it felt like. It wasn’t a flat line sort of pain, it was like someone plucking a guitar string over and over again, but with no discernible rhythm.

I went from feeling great to a pain level of about 9 with no warning whatsoever. In my case, there’s really not much that can be done when the pain hits that hard, that fast. If the pain sets in slowly, there’s a good chance that I can head it off by exercising; the endorphin kick from working out really does wonders. The problem is, for that to work, I need to have some kind of warning that the pain is coming, which rarely happens.

I can’t speak for anyone else, but for me, pain killers simply do not work. I have literally tried every type of pain relief available. Perhaps not every single drug/remedy, but at least one out of every branch; NSAIDS, opioids, corticosteroids, acetaminophen, muscle relaxants, anti-anxiety/depressants, and even anti-convulsants. I’ve tried physical therapies, massage therapy, chiropractic treatments… None of them help with the pain. The best result that I can ever get from a pain reliever is that it makes me too stupid to care about the pain. The pain doesn’t go away, and it doesn’t ease up, but the drugs cloud my head so that the pain just doesn’t seem important anymore. Needless to say, it’s very difficult to function like that. For this reason, pain killers are always my absolute last resort.

It’s never a question of whether I’ll make it through a flare up or not; the question is will I make it through without having some sort of nervous meltdown. Most of the time, it’s easier to just suffer through the pain; at least I can still change the TV channel if I want to or get myself a bowl of cereal. I HATE the way the drugs make me feel. Not only do they make me completely useless, they usually have the side effect of making me feel depressed. Sometimes though, the only choice I have is to let go; it’s either my independence or my sanity. The drugs will eventually wear off… If I lose my mind, I won’t be independent anymore anyway.

Monday was one of those days. It started at around 3am. I had been having a nightmare that someone was basically flaying the skin off my left arm; it was not pretty. When I finally managed to escape back to consciousness, the pain was so intense that for a second, I questioned whether it was a nightmare or not. Once my head cleared, I was so nauseous from the pain that I was afraid to move for fear I’d be sick. I knew there was no way I was making it through the rest of the night on my own; I just took the pills. I managed to fall back asleep, but it was far from restful and since the drugs only last for a few hours, I was wrenched awake again around 7am. Once again, I didn’t even try to fight it, I just reached for the bottle of stupidity.

By 9am, I was completely befuddled from the drugs and lack of sleep. When asked how I slept, my response was something along the lines of “like shit, but I think I’m high…”. (Sorry, love, I’m sure that’s not what you wanted to hear first thing in the morning…) Needless to say, it was not the best start to a Monday, or any day, for that matter.

My day didn’t get much better from there. I managed to make it through the rest of the morning without taking anymore pills, but it was mostly through sheer stubbornness: there were things that I needed to deal with and I had to be clear-headed to do so. By about 3pm, I knew I wasn’t making it any further on my own. I was exhausted and the pain was making me addle-brained anyway, so I went for the meds, the couch and The Lion King.

Of course, by this point, I was also angry. Normally, I take that anger and pound it out on the pavement, but when you’re so doped up that you can’t even follow a Disney movie, physical activity is out of the question. I ranted and raved in my own head for a while, but eventually, the drugs took the anger away as well, only to replace it with a sort of hopeless apathy. One of my last clear thoughts was that even though I use my rage to fuel the changes I’ve made in my life, the anger is one of the worst parts about having a chronic illness. The illness itself may not be contagious, but the feeling of being powerless is.

It’s easy to forget that you, as the sick person, aren’t the only one dealing with the illness. The people who care about you suffer too. In fact, I would even go so far as to say theirs is the harder role. I know that I would rather suffer myself than watch someone I love have to go through it.

When you’re dealing with something that’s incurable and difficult to treat, *everyone* feels powerless. I’m no expert, but it seems to me that unless a person can find a way to deal with it, eventually that feeling of being powerless turns to anger. They’re not angry at the sick person, they’re angry at the situation, but how do you handle that? You can’t go around trying to hide your illness, it only makes matters worse; but when you tell your loved ones about it, it only seems to stress them out…

It’s damn near impossible to talk about, since no one ever wants to tell the sick person that their illness is fueling their anger, in fact, from my own experience, most people seem to feel guilty admitting that fact even to themselves. Instead, they find other things to be angry about, which only adds more fuel to the fire. Sooner or later, the rage jumps from one person to the next and you end up with a houseful of pissed off people, but no one can explain why.

I understand that it’s not “my fault” that people are upset by the situation, but I still feel guilty about it. If I weren’t sick, they wouldn’t have to worry about me, which would take at least some small portion of stress out of their life. It’s a vicious circle: watching you suffer causes them to suffer, which causes you to feel even worse… How do you break that cycle? Is it even possible? I don’t know the answers to these questions, but I am going to try to find them.

To be continued…

The Plan, update #8

Here’s a random, completely unnecessary fact about me: I LOVE making playlists. Seriously, I can amuse myself for hours putting together a playlist for something. That being said, it should come as no surprise that I have at least 5 different workout themed playlists. It’s quite possible that making new running playlists is my favorite part about running. 🙂 I decided today that it was time to make a new playlist, geared towards running a nine minute mile. There’s an awesome website, www.jog.fm, that creates playlists based on your desired pace, which for me has made finding new music amazingly easy. New or at least fresh music is incredibly important for me, since it’s one of the ways I amuse myself while doing something that I have no natural desire to do.

While looking over the list of suggested songs, I came across several songs that aren’t actually “new”, they’re just new to me. My favorite so far is “Not Afraid” by Eminem. I know that a lot of people find his music offensive, but I love it. I can’t say that I love everything he’s ever written, but I do like most of his stuff, and “Not Afraid” is definitely at the top of that list. Why? Because the song rings true for me, here’s one of my favorite parts:

“And I just can’t keep living this way
So starting today, I’m breaking out of this cage
I’m standing up, I’ma face my demons
I’m manning up, I’ma hold my ground
I’ve had enough, now I’m so fed up
Time to put my life back together right now!”

Admittedly, the song is a bit fast for a 9 minute mile, but it gets my head in the right place, so I’m willing to over look that little fact.

Another song that made it in to my new playlist is “Remember the Name” by Fort Minor feat. Styles of Beyond. Like “Not Afraid”, this song is technically too fast, but it helps me focus and again, I can relate to it:

“This is ten percent luck, twenty percent skill
Fifteen percent concentrated power of will
Five percent pleasure, fifty percent pain
And a hundred percent reason to remember the name!”

If I were to use these lyrics to describe my own journey, it would read more like this:

This is five percent luck, five percent skill
Thirty-five percent concentrated power of will
Five percent pleasure, fifty percent pain

The lyrics don’t flow quite as well that way, but that’s ok, it’s not like I have any aspirations to be a song writer; I’m just an ordinary person, trying the best I can to describe the way I see things. For all the doubters out there, this song, (“Remember the Name”), is a reminder that yes, there is pain involved in this endeavor of mine, but the results are worth it. I am not ignoring the pain factor, nor am I suggesting that anyone who has a similar condition ignore theirs; you have to be able to look at the pain and ask yourself this question: “Is this a pain I can work through, or do I need to slow things down?”

When the answer is “yes, I can work through/around this pain”, that’s where the “thirty-five percent concentrated power of will” part comes in. I’ll be the first to admit that I don’t exactly LIKE exercising, (“five percent pleasure”), but I have learned that it is necessary. If I want to have something that even resembles a “normal” life, I am going to have to work for it, which in this case means working out, or at the very least staying active. I will not be a prisoner to my pain, even if it means getting up and doing things I am not particularly fond of. Of course, it also means paying close attention to what my body is trying to tell me.

Even when someone is as intimately familiar with pain as those of us who deal with it on a daily basis, it can be damn near impossible to tell the difference between “serious, something is wrong pain” and “normal, fibro pain”. Do I get it wrong sometimes? Yep. Being as stubborn as I am, I usually tend to push through when I really should take a break; more often than not, it takes someone else pointing out that I need to rest to get me to actually do it.  No, I am not exaggerating, I am actually that hard-headed. Thankfully, I have someone in my life who loves me enough to say “hey, dummy, you need to take a break”.

I truly wish that I could sit here and say that all the hard work has totally paid off and that I am completely pain-free. I can’t.

Before I started “THE Plan”, I spent EVERY SINGLE DAY in near constant pain, often rating 8 or higher on a scale of 10. Some days, I dealt with an incessant “hum” of pain at about a level of 5 or so, with crippling spikes of 8 to 10. Every day was a “bad” day and I nearly lost myself in the misery. Then, one day, I woke up. I realized that no one was going to “fix” me and that if *I* didn’t do something, I was going to end up wasting my entire life.

There is no cure or even any definite treatment for fibromyalgia. There isn’t even a common consensus on what causes it. From the looks of things, it will be a very long time before researchers even begin to understand the disease. The only thing that anyone seemed to agree on was that regular exercise seems to help with the symptoms. I took that idea to heart and thus, “THE” Plan was born.

It’s been eight months, 35 pounds, and over 1000 miles.  I am exercising a minimum of 4, usually 5 days a week, for at least 30 minutes a day.

I am not pain free, but now the “good days” out number the “bad” days by about 5 to 1. I am no longer in constant pain and while I still experience some kind of pain on a daily basis, my average pain level is 5 or under, with occasional spikes of 8 to 10. Fatigue, insomnia and “fibro fog” are all still major problems, but most of those symptoms can be at least partially managed by medication. I am well aware that I am not “cured” and I know that as soon as I stop working at it, things will go right back to the way they were before. Nothing that is worth having comes without a fight and since as far as anyone knows, you only get one life, I’d say that’s definitely worth fighting for.

“I’m not afraid
To take a stand
Come take my hand
We’ll walk this road together, through the storm
Whatever weather, cold or warm
Just letting you know that you’re not alone
Follow if you feel like you’ve been down the same road”

— Eminem, “Not Afraid”