Forgotten Pains

It didn't occur to me until today that in my last post I didn't mention one major aspect of my disease that is also invisible, yet plays a major role: the pain.

I named this blog pains and recreation for a reason. Yet somehow the pain skipped my mind when writing the last article, likely because I spend much of my time attempting to put the pain out of my conscious thoughts. Anyone with chronic pain can tell you how maddening it is. The irrepressible aches and ever present creaks and groans can drive you nuts if you let them. I try to not, but I have spent plenty of time on the verge ... such as right now as I write this post.

The wonderful thing about the muscle pains that I get is the unpredictability. This time last week I was mostly okay. Like I said, I try to ignore the daily aches if possible. Then one day last week I began to feel a familiar grinding sensation in my left quadricep as I walked through a store. "It'll pass," I thought hopefully as I tried to hide my sudden limp.

Occasionally I can feel my muscle functioning. I actually become consciously aware of the muscle (especially in my thighs) moving, constricting and pulling. It's like I can feel it sliding under my skin, but I know that's not possible. This is the grinding sensation that I hoped would pass. It did eventually subside enough for me to get home and rest.

Then Saturday rolled around. Happy fun time with the kids! I tried to restrict myself because I was already aching pretty badly. We washed my car in the driveway, and cleaned house a little.

Sunday. Over-slept to make church. So we had a family afternoon out. My aches began to turn to cramping and stabbing pains in my left thigh while we were out. I went to the restroom at my sister-in-law's house and discovered that dreaded burnt-orange color. Ketosis. [A correction here from my sister reading this and pointing out I had the terms mixed up: what actually was happening to me was rhabdomyolysis. I will do a new post soon discussing the dangers of rhabdo.] Crap. We had to leave to get home. I knew pain would escalate with that going on. I know, some of you are saying 'why didn't you go to the ER, idiot?' Two reasons: I knew lots of fluids might stop the situation without an IV, and I have no medical insurance. That last one will garner its own post sometime. But for now on with the story.

After two jugs of gatoraide I was finally pee-ing clear again by around midnight. But the damage had been done. It was going to hurt. Bad.

Sure enough, Monday morning I was largely unable to move. I needed both forearm crutches for any mobility. The pains were searing.

Let me take a tangent and explain the muscle pain I experience. Well, I can't explain why it happens, because I don't know, but I can describe how it feels. The sensations range from burning hot temperature feelings inside my muscles (My pains are mostly in my legs, whether thigh or calf or both, but not restricted to there.) to tearing and scraping sensations - again, inside the muscles, to straight cramps and spasms, to the feeling that there's a gremlin trapped inside my leg trying to hack his way out with a machete. I have also described these before as a screwdriver stuck in my thigh. Oh, and the most common: a pincushion with all the needles pointing out, stuck just under my skin. All of this happens simultaneously with the weakness mentioned in my last post.

So Monday was miserable. Tuesday I began to get a little better. I could get around with only my right forearm crutch, since it was my left thigh giving the problems. This had advantages since it freed up a hand for carrying things. Very useful when you're stay-at-home-dad of a six-year-old and three-year-old, as am I.

Sometime Tuesday night I graduated myself to just my cane. Wednesday morning I was feeling even better, taking a couple of steps without the cane a few times when making lunch for the kids. Then it all went to hell.

I got mad. I won't say at whom or about what, but I was livid. My body shook and my mouth became dry as I felt the adrenaline surge through me. This lasted some time, with my body trembling from the anger. My legs shook as well, tensing up as I attempted to calm myself and not show my anger to the children, especially since it wasn't toward them.

So, since this incident I have taken a few steps back, and have been on both forearm crutches. The pain is back, too. Vengefully so. I take a prescription as needed to help with spasms and pains. I've taken more this week than in the past three months. I am writing this now in an attempt to distract myself so that I may pass out. The post will be stamped Thursday. It's still dark out. It's still my Wednesday. I actually have to get up in two hours. Joy.

We shall see what tomorrow brings, and how long it takes to get back to normal. Well, my normal anyway. It's a little south of most people's normal, but it's where I reside these days. Hopefully I'll get back to normal soon, and be able to have a little recreation to go with my pains.