The Good, the bad, the ugly…

If I remember correctly it was the name of a Clint Eastwood movie. Clint’s cool and all, but I was never a big fan of westerns. In fact, the only two films I can remember watching that had anything to do with him were The Million Dollar baby and Grand Torino. Now I know my wife and brother will have much to say about that fact, but for me, movies and television shows are about instant entertainment. I don’t try to etch into memory the name of the dude who owns the bowling alley, that lady with the perfect putt I saw at mini golf, or the winning hand I saw someone else get at poker last Friday. Instant entertainment I say. Any hoo, why the title you ask? Well, many have asked me what is it like to have Rhabdomyolysis, and now that the pain hasn’t gone away, what is a normal day in your life?

Well here goes… the good, the bad, and the ugly.

The Good:

So long as I stay home and stay in bed, rest 10-12 hours for the day (not all at once), stay well hydrated and medicated – I feel alright. By medicated I mean regular doses of dilaudid or morphine or Tylenol 3’s (ha T’3 really are like candy now, but I do use them so on the list they go). On a good day, I can go for short distance drives (30 mins or less and of course not while drugged silly) walk outside for a bit, cook dinner, play a board game with the kids, etc. Every 2-3 hours I have to rest, sit or lay down. Good days are less and less frequent now, so I make sure to make the best of them! The drugs really do help, but the side effects are getting to me, so I try to use them only when I really can’t bear the pain. But, that’s confusing you say?!?! To have a good day, I need the meds, but I try my best not to take the meds?!?!? Welcome to my world.

The Bad:

On a bad day it literally takes hours to get out of bed. It’s almost as if I have to coax my body into working. Everything is a task: brushing teeth, changing clothes, just sitting down on a chair hurts after a few minutes. Of late my hands get real weak and I have even dropped a couple glasses and a jar (as luck would have it, it was full of smuckers, grrrr). Every major muscle group hurts. My legs, mostly the quads, my lower back, shoulders… they all ache. It’s like having a full body Charlie horse. On these days I do my best to keep going… to make it normal as much as I can. My wife, my dear sweet wife, ends up doing everything, and it pains me to watch not being able to help even to do the dishes… help her fold laundry… down to sitting on the kids bed to read them a bedtime story is pain. I feel like I am rationed energy – so I can do so much for the day and then I am wiped, and that’s it.

So on these days you will hear the cry for mr loopy! Who is mr loopy you ask? LOL it’s the name I’ve given my drug induced state of chillaxation. You see on these days I MUST take my full day of medication, and basically I’m a zombie. A high as a kite zombie, but zombie nonetheless. The pain can be anywhere from numbing to excruciating (and trust me I don’t use that word lightly). On these days I just disappear… a whole lotta “poor me” time and sleep.

In the middle of this I go to aqua class twice weekly, and try to walk as much as I can, but you can imagine my state when I return home. No real win win, just manage as best I can not to  lose lose. The doctors say I must exercise as much as I can, but no running, biking, weights, treadmills, sports, etc etc… but yea, do as much as you can. Really?!?! So yup, walking and swimming.

There are the days that fall in between good and bad, so it’s not a one or the other, but I’d say it’s about 25/75 good to bad overall.

The Ugly:

This is the one that most people ask about… what is it like during an attack? I am not sure how to explain it, but I did once have a female doctor say to me “women have nothing on you… you have experienced pain similar to child birth and then some”. My wife doesn’t seem to agree, but what does she know… right??

The pain is off the chart. It is intense. It is everywhere. During an attack I think even my eyelids hurt. It normally starts with a chest or sinus infection, followed by a fever with your normal aches and pains. Fever comes down, pain increases, urine switches shades (from clear to coke coloured) and then the Ck rises and so does the level of ‘cry for your mommy’ pain. At first it always seems like I can handle it, and that it will be fine, then the CK goes up some more. It normally peaks by about the third or fourth day, and by that time I can’t walk. I can talk and laugh, which aside from a WHOLE HEAP OF DRUGS, is my therapy. I laugh a lot! I come from a family of laugh a lots… we like to laugh. I got into an accident with a truck a couple weeks ago (nope I wasn’t in the wrong, dude clearly made a left on a green light and bam!!!), and the first thing I did when I got out of the car was laugh.

During my last CK record breaking visit, there were two days where I was literally paralyzed. Thank goodness for condom catheters. Yes you read right. Never seen one? Click here Always glad to help further education. If you know me personally, next time you see me, ask me how this was introduced to me.  Sorry, I’m easily distracted.

Yes, CK was 88,000 and that translates into a pain that just makes your cry. Like a little baby. I’d like to say you curl up in the fetal position, but you can’t. The only saving grace is the drugs. Hospital grade, muscle direct injection, pain narcotics are in a word… AWESOME. Until they wear off and you remember all your problems are real, and you’re still in the… wooooooooo another injection….ahhh the world is good again.

There really aren’t exact words… I can give you analogies ‘til the cows came home, but it could never describe how it feels. The closest I think I’ve managed is the pain after you get your wizdom (sp on purpose) teeth yanked – but spread that over your whole body.

I am lucky though… I have a great family and amazing friends. Once you get your spirits in line, the pain is just a matter of time and….. wooooooooo awwwwwww injections.

So that probably made things about as clear as mud (thanks for the phrase BL). Really I don’t think I’d ever be able to convey it accurately and here’s to hoping you never get to tell me you know how I feel. If only it were like the movies to me, and in a flash, would just go away.