Out of Energy

Today Yesterday was great. I slept in a little bit, puttered around the apartment, got sushi, went and saw a movie with my good friend Deanna, then got some pizza and watched Argentina and Germany be very angry at each other during a world cup game, after which I came home to do laundry, putter some more along with watch the old live-action The Tick show on Netflix. I also needed some supplies and I have no concept of things being closed so I also thought it would be a good idea to head out and get some things at the nearby grocery store. It’s walking distance and I’d made the walk in the midday heat before, so I didn’t see that there would be a problem. Unfortunately, there was a little bit of a problem, and about halfway home, I started to feel fatigued and had to continuously readjust the distribution of everything I was carrying.

It has been awhile since I’ve felt this particular feeling and it (along with a few other things I drafted but never posted) has been quite jarring and has given me a sort of mini-wakeup of the fact that I do have myasthenia gravis, and that I’m either pumped pretty incredibly full of various medications, or I simply run out of puff at some point through the day.

This particular concept is difficult to explain to some people. I can wake up totally capable of hopping around and jumping into the shower and walking a few miles and speaking properly, even when I’m not on very much medication, but if I am not careful with what I do, I can pretty quickly become fatigued. Even with my medications as they currently stand, things like moving have been far more difficult, and I paid for several days after getting everything to my apartment, even with the help of all of my fantastic friends.

A fantastic read, about what this kind of thing feels like comes from “The Spoon Theory.” This woman and her best friend of several years were talking one day and the friend asks “What is it like, having Lupus?” The author was surprised and immediately started describing a bunch of the surface symptoms of lupus, general physical sickness, which is terrible. The friend pushed on and wanted to know more. What daily life is actually like with the disease, “what it felt like, not physically, but what it felt like to be me, to be sick.”

The result is that the author describes what she calls the spoon theory. Basically, in a chronic illness that involves fatiguing, you start your day with a certain number of “spoons.” These spoons, or any other counter, really, are a measure of what you can and can’t do on any given day. It’s extremely true. When I first got the disease, it was often the case that I could do normal things in the morning, either for a certain amount of time or just a certain level of activity, and then after a certain point, just be completely useless.

Although it has been better in the past several months, it’s still important for me to be aware of, especially as the levels for my medications get adjusted, or I need to do different things throughout the day. I have been trying to change my medication levels, so I can rely less on pyridostigmine throughout my day, and ultimately, I’d even love to be done with prednisone. So a few days ago I started to realize that my need for pyridostigmine has indeed reduced a little bit, but I took it to this extreme level that not only caused my grocery incident tonight, but also an incident a few days ago where I hadn’t equipped myself with enough time to get everywhere I needed to be, and therefore tried to rush over the cardiac hill on campus. Needless to say, it lived up to its name and about halfway up I definitely started to feel like I wouldn’t make it. Fortunately I did, but I had a few bad moments that day.

I have also been wanting to lay out what I think about comparing my disease to other diseases. I implied a comparison between myasthenia gravis and lupus earlier, but the truth is, based on what I’ve read Christine Miserandino, there just isn’t any comparison, Lupus is far worse.

Which brings me to something that happened with Glenn recently: he compared MG to another chronic disease, Crohn’s Disease. Crohn’s, my understanding has it, is a terrible terrible thing where your internal organs are all messed up. On the other hand, my understanding is that the the symproms of Crohn’s, from WebMD, happen to be the same as the symptoms I experience from just one of my medications: Headaches, feeling faint, stomach aches and sometimes, diarrhea and vomiting.

Although I want to think Glenn knows a lot about my condition, having lived with me and been kept up to date on it since it was diagnosed, I think I may be sorely wrong about his awareness of it. It starts in that he wouldn’t listen to my explaination of how MG is categorized between autoimmune disorders and neuromuscular diseases, and what those categorizations mean. It’s not like I haven’t been on Google quite frequently since late 2008, learning all of this stuff. At that point, his telling me that my disease was similar to this other disease was just adding to my frustration.

To put it simply… yes, I have miracle medication, but no, that doesn’t mean I’m without the disease or I don’t sometimes have to be conscious of it, and the comparison Glenn was making was that this other kid’s disease was as bad as mine.1 That’s simply untrue no matter how you slice it. His disease has visible symptoms as bad as simply one of my medications. If I weren’t on that medication, I could be falling over in crosswalks, choking and improperly swallowing bits of Taco Bell lettuce, and generally having a hard time at living life.

And so, I have the article that I now need to show to Glenn. A few of my friends have already become aware of it and from time to time even ask me about my spoons, a gesture which I appreciate more than I care to share. We’ll see how relevant it remains or becomes as the adjustments to my medications begin to take effect.

Footnotes!

1: That’s not to suggest that I’m unsympathetic to people with diseases other than MG. This is simply to suggest that when you’re perfectly healthy and you have a friend with a chronic disease, it is a bad idea to tell them “this other disease is worse” especially when that is factually false, and continue to insist that you’re correct.

July 5, 2010 | No Comments »

Uncool Morning

I usually love the morning time, it’s my opportunity to be very aware of the transition from being asleep to being awake, and it typically consists of three phases. Phase One is where I was sleeping, and then am awakened by an alarm clock, use the restroom and weigh myself if necessary, and then lay back down for another 20 to 25 minutes. Phase Two is where I get out of bed again and then take my shower and get dressed. During Phase Three, I tend to have become fully awake and am browsing the Internet and eating until it is time to head out for whatever I need to do that day.

Beginning with the part where I actually managed to get to sleep last night, this time was way different in that I never actually managed to get to sleep. My roommate never went to bed, at all, and although there were brief times where he wasn’t in the room, he and his other friend where in the room watching very loud videos on the TV until about 3 or 4 in the morning, at which point he did turn the volume down, but was still mashing buttons and had a lot of lights on. (Keep in mind that when he sleeps, he requires the room to be the perfect temperature, silent, and completely dark.)

Additionally, I haven’t had the opportunity to go shopping, and I ate the last of my oatmeal yesterday morning. So I woke up this morning to some fairly epic hunger pangs, as often happens when I’m taking pyridostigmine. So I lounged in bed fora  few more minutes, then deciding I needed to expedite the process of me leaving the room, so I started with my shower, weighed myself (222, almost back to where I was before spring break!) and then got ready to leave.

After a few delays, I headed out at like 9:07, and made my way toward McDonald’s, about a mile and a half away, got my sausage mcmuffin with cheese and some orange juice, and walked back to the office, still nearly shedding tears from the stomach pain, and then sat down next to a coworker at the lab desk, which I hate because the keyboard and mouse are always, without fail, very greasy. (So I had to grab a keyboard/mouse out of my office.)

After that, my day improved, fortunately, and I always love the opportunity to take a walk. Fortunately, as I discovered, it’s possible to make the walk from my residence hall to the McDonald’s here in town back to the office, all in about 40 minutes. However I suppose I shouldn’t try achieving this again, as I suspect I will never be able to duplicate those results.

March 27, 2010 | No Comments »

I still have MG

Before the spring break, I had a fairly significant length of time, like two weeks, where it was simply impossible for me to remember to bring my medications with me to work, so I forgot them all of the time. Half of the time I’d go through the day and realize “Oh, I haven’t taken my Cyclo this morning, I bet it’d be fine if I didn’t take it tonight” or “oh, I’m really tired so I’ll just go to bed before I’m supposed to take the Cyclo.”

Unfortunately, my estimation of how this would work out for me was very, very wrong. Indeed, I thought it’d be fine, maybe I’d notice a twinge of MG one day, immediately return to absolutely full strength of the medication and then have it go away.

Well, over the spring break, about which I’ll be writing at some point, I noticed the twinge of MG, and then as the vacation progressed, I noticed that little bit of the day where I had a thlight lithp get longer and longer, until we were back in Flagstaff and I was lisping pretty hard.

We proceeded to go to the neurologist and discovered that I was, for all intents and purposes, “cured” of MG. Not wanting to ruin it by going “Actually I have more symptoms today than I’ve had for maybe three or four months” I just agreed with it, and figured I’d take some pyridostigmine to alleviate some of my symptoms so the Cyclo could do its stuff.

Unfortunately, that wasn’t so much of an option, and in the week since I was in Phoenix to see the neurologist, I’ve been unable/unwilling to smile very much, because that uses muscles that are weak, I’ve been reverting back to “MG-speech” where my voice is very nasally and because most of my facial muscles are weak, I have issues pronouncing certain sounds. Unfortunately, at this point, it’s worse than just the lisp. Added to all of this, because I still want to be able to walk around and go to classes, I’ve been having some problems with my stomach due to taking pyridostigmine at somewhat random intervals.

This morning, a few of my other “favorite” symptoms came back: shortness of breath, and some vision side-effects. I do not know if the vision side-effects, which tend to be minor and may even purely be a result of the fact that I sit at a computer for a good portion of each day. The real problem for me is the shortness of breath. I can be walking down the big hill on campus, and breathing won’t just be a natural thing. It’ll either be very shallow and come in tiny breaths, or it’ll be large gasps every few moments when I can work up the strength.

It’s terrible and I do hope that it’ll be something that just does go away again when the Cyclo kicks back in. I’d hate to ruin my reputation for being cured, and almost even more, I’d hate to have to ask somebody to take me down to Phoenix again. It’s a good reminder however, that I do still have this disease, even if much of it is hidden during the bulk of the year, when I can properly remember to take the Cyclo.

March 24, 2010 | Tags: | No Comments »

eBay Sellers are Running the Forum

You may or may not already know this, but one of the things I do with my time is that I moderate and administer a forum about old computers. I’m not going to link to it here or even disclose it’s name because either you already know, or it’s just not important for you to know. To give you an idea of how involved I am with the forum, I’ve been an active member there pretty much continuously for the past several years. Like, since 2001 or 2002.

At any rate, since I have become a moderator, there have been two fairly big incidents involving eBay sellers. In the first incident, we had had a rash of threads where some of our particularly knowledgeable and well-written members had a series of scathing criticisms of a particular eBay seller or two. Criticisms so scathing, you might even call it bashing. In the second, most recent incident, a different eBay seller sent us an e-mail asking for some different posts to be removed for a similar reason.

I’ll explain this in the context of the second eBay seller because this one is from the past week or so. Basically, we got an e-mail from a disgruntled eBay seller saying he found our forum either by being alerted by a friend, or searching on google and yahoo for his eBay seller name. More or less, this person demanded that we (as per our rules, un/fortunately) remove the posts and (without warning) remove the forum member who had made the posts in question.

Somewhat reluctantly, we went ahead and removed the posts, however most of us on the administration & moderation staff couldn’t help but notice that this particular person’s attitude is indeed incredibly bad slash unhelpful. My problem with this is that it literally is being told by somebody outside of the community how to run things.

Because of this, I’m going to have to try to lead and guide a communitywide discussion about what “bashing” and “libel” and “slander” are. This will, of course, as per one of the old administrators who is “retiring” (you could say anyway,) “be as wildly successful as the last one.”

Whether or not such a discussion is going to be successful, I think it’s about time for another such discussion, to make everybody aware of the rules that have been around for awhile, and with luck, cause people to think a bit more about what they’re posting.

From time to time I think about what I post on the forum, and what I have posted over the years, since I joined in 2001 or 2002. Although I’ll fully acknowledge that I was never a saint and did have my bad days, sometimes weeks, I just simply can’t recall being as continuously destructive as some of the people currently on the forum. Idealistically I’ll be able to provide some kind of wakeup call and the forum will improve significantly. Realistically, I’ll put far too much effort into writing a few things, reading everybody’s hateful comments, and then being generally unhappy, angry and sad.

February 2, 2010 | Tags: | No Comments »