All week, I have been feeling worse than usual: pain, utter exhaustion, and nausea. I have several different medical conditions and sometimes it’s difficult to juggle the needs of each one. And when one starts causing problems, my whole house of cards tends to go down. When I get sick, I get *really* sick. Then again, sometimes I feel bad without any catalyst whatsoever. It’s like a fun game of What’s Today Going to Bring?
I think this week’s downward spiral began on Monday evening, when I decided to do 2% of the running that my friend Brian did. He did 6.15 miles, so this translated into 0.1234 miles for me to do, which was a numerically satisfying distance. 🙂 Well, for someone with a mitochondrial disorder, this isn’t as easy as one might think. About a third of the way into it, I ran out of stored energy and began having breathing issues and pain. And I slowed down, quite a bit. I was utterly tapped out by time I made it back to my driveway and was gasping for air. I was wheezing, since my lungs tend to react to these things like I have asthma or something, so I went inside and used my inhaler. Not that that seems to do very much good. Besides irritating my arrhythmia.
Thus began my week of pain, exhaustion, and nausea. For good measure, and perhaps due to the inflammatory aspects of my disease, my blood sugar also shot up, which meant that I had to stop eating for a while and drink a lot more water than normal. I’m thinking that I really have to see about getting some fast-acting insulin to use in addition to the Lantus — this isn’t really cutting it anymore.
Exhaustion doesn’t even really describe what I experience. There’s not a good word for it. Soul-crushing, mind-numbing exhaustion that makes you feel a little bit panicky and like you want to cry inside because you cannot sleep that. very. minute. It’s very different from being tired, but I’m not really good at explaining it.
I’ve also been prone to a lot of muscle cramping and spasms this week. On Wednesday (I think it was Wednesday), I was having pretty significant muscle weakness in my left arm. If you’ve ever spent time lifting weights, remember when you are at the end of a set and you are at your limit and your muscles start shaking? You know that feeling your muscles have when you finally put down the weight? It kind of felt like that all day. Like I just might drop a pencil if I tried to pick it up, because it was just too much. Previously, I’ve had times where my muscles have run so completely out of energy that they just stop working. Literally, I would have to use my right arm to make my left arm move. That didn’t happen, but it was a close thing. As the day wore on, I began having muscle spasms in that arm. Not pleasant, and they lasted for hours. For a couple days, at night, I’d have large muscle groups (like my entire abdominal wall, or every muscle in my left leg) contract into a big charley horse-type cramp. I love screaming in pain, really. At least I wasn’t in public when this happened. How embarrassing.
On Thursday evening, I had two meetings to attend after work. I was so exhausted driving home that I was nearly in tears as I exited I-696 to I-75. There was a lot of traffic and I just couldn’t go on any further. Except I had to. I arrived at church 45 minutes before my first meeting and spent that time napping in the car, setting my phone’s alarm app to make sure I woke up. I felt a little better and made it through my meetings.
Friday was a little bit better than Thursday, although I was still significantly nauseated and exhausted. At least my left arm was doing better. I was about at my limit at 2 or 2:30, but stuck it out until the end of my shift at 3:30 pm. I hate how my disease affects me. I like being able to help my co-workers, but sometimes, when I’m not feeling well, I think, “Please, please don’t make me get up and walk to your cube.” But that’s just the pain and exhaustion talking. And I don’t like them to dictate my behavior. So, dear co-workers, I love you. Please be patient with me. I’m doing my best, even though I feel like I’m failing you.
At the end of the work day, as per usual, I walk around the office to say goodbye to everyone. It is odd working this earlier shift; now, most people are still working when I leave. It feels weird to be leaving before everyone else. Like I’m some weird sort of slacker, taking time off while everyone else continues to work. Anyways. I stop to say good night to my boss and he stops me to talk about how I’m doing (because I tend to share things — or really, because it’s nice to have someone with whom I *can* share things, and I don’t tend to share much, except with a select few, and then it’s usually an abbreviated version of what’s actually going on). He’s concerned, and I think, would prefer that I take some time to slow down, rest, and recuperate. Except. If I rested every time I felt bad, I would not do anything at all. I’m at the point that I get tired brushing my hair. For real. That and resting doesn’t really make me feel better. Sure, sometimes I’m so exhausted that I forfeit an entire day, but I don’t feel *rested* or *better* after that; I’m just able to continue functioning instead of shutting down. I’m not sure how best to describe it. So instead of trying to fix what I cannot fix, I try to focus on living as much as I can. Doing and seeing and serving and loving as much as I can. I would rather burn brightly for a short period of time than to have more time on earth, but spend most of it in bed. Not that I think time in bed will significantly prolong my life or anything. So.
After promising to get at least 4 hours of sleep this weekend (per night, just so we are clear), I head home. Or well, not really home, since I’m exhausted. I head over to OLGC, intending to rest there for a bit before finishing the drive home. I get there and spend the next 45 minutes on their couch by the mosaic of Our Lady of Good Counsel.
I don’t really get to sleep (perhaps for 5-10 minutes), but spend most of my time praying. They have a Fish Fry every Friday in Lent, starting at 5:30 pm. About that time, a bunch of people start coming into church, so I get up and head downstairs for dinner.
After dinner, I head home. I make it there okay, but by the time I get to my house I’m exhausted again. I put some dishes in the dishwasher and head to bed. It’s about 8 pm. Although I’m exhausted, it takes me a while to actually fall asleep. I wake up at 3 am, after approximately 6 hours of sleep. I put away the dishes in the dishwasher and start another load. I stay busy for a couple hours, then go back down to sleep.
I get up again about 8 am. So, maybe 9 hours total? Surely, way over what I had promised to do. Saturday morning. I feel worse than Friday. So, so exhausted, and I’ve just gotten up (again). At least my blood sugar’s decent this morning (for me, anyway). I was awake a little later than I had wanted to be. I have been overdue in getting my oil changed on my car and wanted to be at the dealership when they opened, instead I arrived 45 minutes later, at 8:45 am. They had a couple of people in front of me, and it ended up taking about 2 hours, which was fine. I just sat there and caught up on my blog reading. 🙂 The receptionist/clerk/greeter (Jordan) let me know that he proposed to his girlfriend and is now engaged and due to be wed in September. So, please pray with me for his upcoming nuptials and marriage. They also ordered a part which “crumbled” while they were doing the oil change and tire rotation. It was only $15 and they’ll have it in on Tuesday, so likely sometime during Holy Week (next week!!) it will be repaired. The skid plate still needs to be replaced, but I’m still waiting on a quote for that.
Next, I headed to Home Depot. Several months ago, the lever inside my toilet tank had rusted and finally broken off. So, I’d been flushing the toilet by opening the tank and opening the flapper valve myself. Yay. I picked up a new lever and handle (since they went together, although sold separately — it was just easier than try to guess what would match my existing set up). While I was there, I picked up another hammer (since mine has been MIA for a while) so I could install my holy water font, some light bulbs which I have been needing for a while, and some all-purpose cleaner. Oh, and some paint samples, so I can finally get my bedroom re-painted. As you can see, I have a lot of things which need to be done around the house! While there, I was looking at windows, since it looks like I’ll have to replace the window in my shower, and they had a guy who can come out later today and give me a quote on it.
Being awake only a few hours, I was already about at the limit of my exhaustion. Yet. I was right by a Kroger and needed to pick up some things there. It’s amazing how I can walk through nearly the entire store and *still* forget something. I made it out with ingredients for dinner, protein drinks, dishwasher soap, but forgot the milk. Oh well.
Feeling like I was dying, I went to the drive-thru Starbucks on the way back home. Sadly, there was a long line, but eventually, I received my life-saving iced venti no-ice mocha.
At home, I replaced the lever and handle on the toilet. I was momentarily thwarted when the adjustable wrench I have proved to be too small to get the bolt apart, but I was able to twist the handle (since the lever had already broken off) and loosen it that way. Yay! Problem solved and all is now well!
After cleaning the bathroom, I set out to make dinner. I was going to make a “real meal,” but still being super-tired, I just made soup instead. I threw some bamboo, cut-up chicken breast, carrots, garlic, and spinach in some homemade broth and called it good. I sat down, it now being about 3 pm, and had my late lunch/early dinner while watching a movie. (No, I won’t tell you what it was; you’ll laugh at my choice!)
I think I mentioned that I’ve been completely exhausted since waking, right? So, since I have a couple hours before the window guy comes, I thought I’d take a quick nap. (See? I’m doing so well on this rest-thing that John suggested!) However, I wasn’t able to fall asleep, as exhaustion does not necessarily mean being tired. So. I decided to write this.
And here we are… all caught up to real time. Be sure to check for Part Two, to see how the rest of the evening/weekend goes!