When you slice open your finger, and then your iPhone pretends like it doesn’t know you anymore.
Wow. These past few weeks have been rough!
Today is no exception. I planned on getting quite a few things done today, but shortly after I got to work, I started feeling really nauseated. Like, really really. So, I took some Zofran for that (once I remembered that I had some).
Unfortunately, this didn’t help. Actually, I started feeling much worse. I was getting very dizzy and lightheaded and I began to really think that I was going to pass out. Which, being at work, is probably not the best thing to happen. It was only 2 pm or so, and I was scheduled to work until 10 pm.
At about 3 pm, with two of my co-workers scheduled to leave in about an hour (leaving me and one other person), I figured that I needed a contingency plan. I hated doing this, mostly because I hate letting people down, but I contacted my manager and let him know that I was not well, and we made arrangements for a co-worker to finish my shift (and possibly for another to come in early).
I can’t even describe how bad I felt. I guess at least I wasn’t super exhausted, as I have been recently. I asked for prayers and hoped that I wouldn’t actually pass out, because I’d hate to have to go to the ER twice in two weeks — that’s just ridiculous.
Finally, about 4:30 pm, it started to let up some, and the lightheadedness started to recede. The nausea is still present, but I can work around that. I asked my co-worker to stay a half-hour, to make sure I’d be okay, and when I was fairly stable at 5 pm, I let him know that it was okay for him to go home.
Have I mentioned how much I dislike this? I feel like I’m becoming a liability. So frustrating. And I didn’t finish anything that I wanted to work on today. *sigh* I guess I have to learn patience with myself.
Stupid illness. Go away.
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!
Happy Tuesday! Hope everyone is feeling well today!
Does anyone remember those giraffe toys? Where you push up on the bottom and they collapse?
Well, I’ve taken them to represent me when I’m sick.
In looking for stickers and such for my EC planner, I found these adorable giraffe stickers, and figured that I can use them to mark when I’m feeling particularly bad. That way, when I look at my planner, I don’t see a bunch of depressing pages, but a whole herd of cuteness!
For funsies, I’m reading through my Anatomy and Physiology textbook and completing the study workbook (that I never used when I was actually *taking* the class).
Now, I got a lot of stuff wrong with me, but one of them is that I tend to accrue lactic acid like crazy. By “crazy”, I mean that on one of my studies, my lactic acid production upon exertion was something like 25 times normal.
So, let’s see what the trusty A/P text has to say about acidosis:
The normal pH of blood, for example, is 7.35 – 7.45. Acidosis, in which blood pH falls to 7.0 to 7.3, makes one feel disoriented and fatigued, and breathing may become difficult. — Hole’s Human Anatomy and Physiology, David Shier et al.
On to chaper 3! Where we will learn about cells, and the stupid, stupid cells within cells called mitochondria which SUCK. (At least, mine do!) 🙂
Oooh! Shiny object!
The distracted data miner is totally me. I don’t necessarily to this on the internet, but I do find that even when I am reading something, I interrupt myself to look up some tangential fact, etc.
And I don’t know how to be still and not think.
Curled into the fetal position, praying morning comes quickly.
Heart beating so fast, I can barely tell one beat from the next.
Pain and nausea.
I got up early this morning. I had issues with my computer yesterday and didn’t get to renew my library movies in time, so I finished watching the ones that I hadn’t watched yet, so that I could return them sometime after Mass or on my way to Matthias’ 1st birthday party. Another $5 library fine. *sigh* At least I support the library financially, right?
It was difficult getting around. My bruises hurt. My muscles hurt worse. I was wobbly and didn’t feel like I had any strength. At times, I felt that my legs were about to buckle underneath me. The worst part is getting up from crouching or sitting. I almost can’t do that.
I went to the 8:15 am Mass at St. A’s, got a mocha and breakfast and came home to finish watching my movies. I dropped them off at the library before it opened and went to Matthias’s party. It was fun, although I knew few people there and took over 500 pictures. 🙂 James had asked if I would take some.
After the party, I stop at the grocery store. I have been out of milk. It’s really all I wanted, but I pick up some soup and things for the week. I lean over the cart as I shop. Still in pain, still unsteady on my feet.
I come home, have something little to eat and sit in the back bedroom. I’m chilly. I read a little, then nap. When I wake up, I start to stand and nearly fall over. Still not back to normal. Every step hurts. I go to my bed and crawl under the feather blanket, shoes still on and fall asleep again. As I fall asleep, I think about this muscle fatigue. I can’t seem to shake it. It’s been a whole day and a lot of sleep since then. I wonder if this is just another aspect of the disease progression. I haven’t really considered what that would look like.
What if I don’t “get back to normal”? What if I stay just like this? Or if it keeps getting worse until I can no longer stand and move? I think I would be a little scared, if I could imagine it. But I can’t, really. I suppose I’ll deal with that when the time comes. And God will give me grace when I need it.
So, I’m not afraid. I’m stubborn, happy, joyful, competitive, and I love my life. Dauntless, yet another day.
It’s interesting, isn’t it? The way what we read influences our moods, our thoughts, and our actions? I think our tendency is to think that what we read doesn’t really affect us, and to a certain extent we can learn to distance ourselves from media and view it objectively.
But what about the books that we do not hold at a distance? What about those books that we allow ourselves to become immersed in? I think they can color the way we view the world. Which is what is so great about them, and also why we need to be diligent about controlling what media we expose ourselves to. No matter how old you are, you are constantly forming yourself. Make sure you are forming yourself into the person that you’d like to be, instead of drifting tumbleweed-style into someone you never envisioned.
Why do I bring this up now?
I think it is because of the way a book I finished reading this weekend affected me.
The book that I have been reading (well, listening to on my commute via the wonders of Audible), is “Divergent,” by Veronica Roth. It is one of those ubiquitous dystopian YA fiction novels. I love it, because I relate so much to Tris.
If you haven’t read this book and want to, you may want to stop reading now. I’m probably going to have a bunch of spoilers in here, in order to explain how and why this book has affected me in the way that it has.
She lives in some future Chicago, where the society is broken down into 5 Factions, each with it’s own idea of what trait is most needed for a stable society. There is the Erudite (knowledge), Amity (friendship/kindness), Candor (truth), Abnegation (self-denial) and Dauntless (courage/bravery). So, at some point, these evolved to fight the evils of the world: ignorance, cruelty, deceit, selfishness and cowardice. In the world, when you turn 17, you take an aptitude test to help you discern what Faction you fit in best with. This aptitude test doesn’t decide for you, however. You can always pick whichever Faction you want. It sounds kind of idyllic, right?
Well. Not so fast.
First, currently (in book time), there is friction between the Factions, and pride in one’s Faction has morphed into something vaguely xenophobic and hostile. Before they choose, the kids grow up going to the same school, but they do not often interact in any substantial way with children of the other Factions.
Second, there is a saying that they have – “Faction before blood” – and this is taken quite seriously. Once you choose a Faction, there is no going back. If you choose a Faction other than the one in which you were raised, you effectively reject your family.
Third, once you choose your Faction, they have to choose you. If you don’t pass their Initiation, you become Factionless, or essentially homeless, with no way to support yourself.
Our protagonist, Tris, was born into Abnegation and eventually chooses Dauntless. The book consists mostly of the tests and training that she undergoes while in Initiation for Dauntless, the fearless Faction, which provides security and soldiers for the society.
This speaks to me, because I feel that I underwent an “Abnegation to Dauntless” transfer myself after high school when I joined the Navy.
Anyone who has been through any kind of formation experience can attest to the profound ways in which it changes a person. Boot camp and Navy life in general has been very formative for me. It has been years now since I have been in the Navy, but I don’t think you will ever get the Navy out of me. In a way, I will be a soldier forever. It has changed me.
But, just like Tris, it is hard to parse out what is innate in my nature (as I have had some of these personality traits since birth) and what has been formed in me by my Initiation into Navy life. That just made it all the more interesting to me to see the way she struggles with these questions and ponders how much Dauntless was in her all along, and how much Initiation has colored her perspective.
The first thing I noticed as I read the book was how the tone of my day changed. The more immersed I was into her experiences of being beaten, fighting, competition, dealing with physical pain, and learning combat … the more I was reminded of my own formation in these areas. It brought back that soldiering mindset, such that I would leave my car in the morning and see things in a different light.
Some things that the book highlights which I have noticed in myself are an efficiency in action, a tendency to ignore pain in order to get the mission accomplished, a particular sense of brotherhood with my fellow military members, a healthy dose of competition, and a certain degree of recklessness.
Sorry to ruin it for you, but for all of you who have seen me as “quiet”, “sweet”, or “shy” … I am not really that. I just contain it well.
But as the title of this blog, Paroxysm of Giggles, implies, there are times when it all comes erupting out of me. And then people tend to be shocked.
Bwahahahaha! (<— This is the real me.)
Back to how this book affected my weekend. Two things to keep in mind. First, I have a neuromuscular disorder. Second, I am very mission-oriented. Okay, so a friend asked if people would help her move into her new house and I agreed to do this. I was on the team at the new house, getting everything clean and ready for the movers. So, for hours I was washing walls. (The bottoms of the walls, her mother-in-law was on a step-stool and did all the tops). It's a big house and has a LOT of walls! 🙂 We didn't end up getting everything washed, but we got the vast majority of the walls, most of the closets, and two bathrooms done.
Toward the end of the day (about 3 or 4 pm), we were basically done and the movers were bringing things in from the old house. Since I hadn't had any cardiac issues so far, I had kept working and working and working…. I wasn't in pain and I wasn't getting out of breath. So what happened was really quite curious to me.
My muscles just stopped working. Like they just didn't have enough energy to do anything else.
When it happened, I was on the floor in the hallway between the kitchen and the formal dining room/living room. I had been washing the bottom of the walls there and was sitting on the floor to do so. It had been my habit to, more or less, sit on the floor and scoot around the rooms. It was easier here, as it was a tile floor, rather than carpet. Although I wasn't in pain, I noticed that my leg muscles were not working right. I couldn't use them very well to help scoot myself down the hallway. Then, I noticed my arm muscles getting fatigued.
I kept washing the walls.
It got to the point that I was moving down the hallway using the side of one foot and my fingertips. That's all I had left!
AND I KEPT GOING! Just like Mickey in the Sorcerer's Apprentice. My friend noticed and saw how ridiculous this was and told me to stop. And so I did.
After I finished washing the hallway.
Pain might have made me stop after a while. Cardiac arrhythmias might have made me stop. But this? What was this anyway? I found it all rather humorous, actually. I couldn't move my legs. I mean I really couldn't move them. I couldn't get up, so I just sat on the floor for a while.
Eventually, I got up and was able to stand and walk, although a little shaky.
I was supposed to go to a Whirly Ball game in the evening, and thought I had missed it. But when I got to my car and got cell service again, I saw that I could make it there and be just a few minutes late, instead of hours late. So I went.
If you've never played Whirly Ball before, essentially you are in a bumper car and have a plastic lacrosse-type net. You try to get the plastic wiffle ball into a goal (about basketball height from the ground). There are two teams. Each game is timed for 13 minutes, so you can get 4 games in before the end of the hour (you rent the court by the hour). I had missed the first game, but was able to play the other 3 games – about 45 minutes.
I am very competitive. 🙂 And I like zooming around. My aim was not too good with the lacrosse thing, but I was excellent (I think, anyway) at defense and rebounding. 🙂 I spent most of my time zooming around at high speeds trying to be in the best place to grab the ball so I could pass it to a teammate. And if all else failed, I would smash into someone else to try and defeat their ability to score or pass.
There's this metal stick that you use to drive the bumper cars and it sits between your legs. Well, remember that I have some serious muscle fatigue going on and I like to hit other bumper cars? Yeah. So that metal stick often got away from me and would smack into one leg or the other. WHAP! WHAP! I'm not kidding; I have some serious bruises from that!
We went out to a bar/restaurant after the game [MY TEAM WON!]. While I was at the restaurant – have you ever had a charley horse? – all of the muscles in my right arm spasmed and contracted. I gasped in pain audibly and clutched my arm to my body as it distorted from the cramp. OUCH! The muscle contraction faded after a minute, but I had some paralysis for another minute or so. Even after, my muscles felt odd and I had to rub them a bit.
My bruises were painful and my muscles were fatigued, so I sort of wobbled to my car and into my house at the end of the night.
What a fun night! 🙂
Wake up. Arrhythmia. Hard to breathe.
Check phone which is lying next to me. Read text; pray for friend.
Thirsty, but exhausted. Don’t want to get out of bed, but there’s no one else to grab me something to drink.
Lay there for a few minutes… Finally, get out of bed and get some juice. Starting to think in longer phrases.
Drink 3 ounces. Go back to bed. Flop down.
Get back up.
After all, this is my life. Usually, I have to go in to work or have something else planned for my day. This morning, I don’t have anything pressing. So, I’ll blog about it. Not to get sympathy, but because this is my experience right now. I don’t feel sorry for myself; it’s true that I have difficult times, but everyone has difficulties, right? It’s important to remember other people, particularly when you are not doing well yourself.
This is usually the time when I pray for others the most. Frequently, I’ll ask my priest for names of people who are in particular need of prayer, whom I’ve never met and probably never will. They say that offering your suffering for others is redemptive for them in some way, and I cling to that. Also, just the fact of focusing on someone else, instead of myself, distracts me from what I’m going through and helps my to learn to love others better.
Later today, I’m going to surprise a friend with a gift. Because she’s not feeling well. 🙂 It involves a bit of shopping, so hopefully I’ll feel just a little bit better and be able to drag myself out of the house.
Until then, do you think it’s okay to wish for minions who can run errands for you? 🙂
[My mom says this photo is the only one she’s ever seen of me in which I don’t look good. And that’s why she kept it. Thanks, Mom!]