Posts from — August 2008

One of the more prominent symptoms from this MS exacerbation has been blurred vision.  In fact, it was the evening that both my left and right eyes were completely blurred that forced me to admit the exacerbation I was having wasn’t a casual heightening of long standing symptoms.  Since that time, the left eye has consistently been impaired while the right eye has varied in degree of blurriness.  In the last several days, things appear to have stabilized in the sense that I am basically near sighted.  Once things get about 4 feet away they’re blurred enough that it’s difficult to make out words, etc.

This is probably the most worrisome of all the problems.  While I can still see, it’s been a bit humbling to realize the things I take for granted in my life.  I can’t imagine what it must be like to be blind.  However, the simply blurred vision that I’m experiencing has given a new appreciation for what sight I do have.  I now have the unique perspective to understand firsthand the experience of people who every day don their glasses or contacts so that they can see afar rather than only near.  It’s also interesting how different things appear at night than they do during the day.  I’m not sure if it’s because you don’t notice landmarks in the same way during the night as during the day.  I think that’s probably a big thing for me.

So, tonight when I went to town to do some shopping I fully intended to be home before dark.  I’ve driven during the day a couple times and it didn’t seem that difficult.  I felt as if I was still well in control and my driving was not suffering.  That wasn’t the case this evening.  By the time I was headed home night had come to stay.

As I drove through town I became more aware of the hazards that already existed.  It was incredibly difficult to judge distances.  It was near impossible to see cars several blocks away entering and leaving the main street I was traveling.  Fear began to grow that something could easily pull in front of me and I likely wouldn’t react quickly enough to avoid a more serious incident.  I’d become one of the “old people” that I’ve always complained about.  I have no business driving until I’m off the steroids and things begin to normalize again.

Once I hit the state highway heading out of town I almost considered pulling over and calling someone with my cell phone to pick me up.  I could’ve easily hit a deer or other wildlife.  Anything really.  However, I just kept on going as I had less than 4 miles and I’d be home.  That was one of the longest 4 miles in my life.  Tightly gripping the wheel,  Driving under the speed limit.  Driving by the white line.  I would make it movw safely.

So anyway, no more driving after dark.  At least for another 2-3 weeks.  Maybe longer.  Whatever the amount of time ridden I’m sure it’ll be  enough to keep things fresh on my mind.  It’ll also ensure we put miles on Maxine rather than Edna.  tI’m sure she’s over due for some maintenancr.

I cannot sleep.  Several more days remain before I’m finished with the tapering dose of steroids.  The insomnia as a result actually seemed to be improving in the last couple days.  Yesterday I actually slept 4 consecutive hours without waking up.  It’s sad that short amount of time is something that I was excited about.  It was such a welcome change to the up every two hours or less.

But, that was yesterday.  Tonight I sit here wide awake.  Not even a yawn.  It’s further complicated by the pain and aggravation in my muscles.  My legs feel as if they’re on fire, burning deep within the muscles.  The muscles themselves are pulled tight like steel tension lines.  A nice long stay in the hot tub earlier tonight helped relax them for a time.  That too has passed.  No matter how I lay one or more muscles contract causing me to wince.  There’s really not much I can do.  I’ve taken the muscle relaxers.  I’ve taken OTC pain relievers.  I’ve even prayed.

All of this just frustrates me.  I try reading a book to maybe get me ready to fall asleep.  Nope.  I turn on the Sirius Spa Channel in the hopes that the music might lull me away.  Notta.  I click on the television and skip over to the History Channel.  Surely whatever this dry program is will bore me to sleep.  Not happening.  I’m to the point where I’m actually considering buying the movie “Brokeback Mountain” tomorrow.  There’s honestly not been a single time that I’ve seen a part of that movie where I didn’t begin to yawn and doze off.  Nah, I’d rather Netflix it than spend the $20.  I wouldn’t want people to see it in my DVD collection and mistakenly think I thought enough of the movie to actually own it.  I’ve tried other means as well but those aren’t cooperating either.  The frustration probably only compounds the underlying issues there as well.

So, I sit here now and type.  This too aggravates and frustrates because even in the twilight hours I’m reminded of the ludicrously pitiful ISP I have no choice but to use.  If there is one, single pain point of living in a rural setting, it is the lack of a legitimate ISP.  Granted, I chose to live this far outside of town.  True, I knew that I was limited to only one provider.  However, when I first subscribed the service was significantly more reliable.  Now they’ve oversold beyond their capacities and the customers are the ones suffering from their shortsightedness.  I’ve often dreamed that they would be bought out by another of the regional ISPs.  If I were to fall asleep I might just have that dream again.  Religiously each month I check with AT&T in the hopes that they might finally replace the equipment that is literally just around the corner from my house so that I could subscribe to DSL.  That too hasn’t happened.

So, I lay here.  Awake.  Pained.  Aggravated.  Frustrated.  In my mind I think now would be a time that I’d love to just stand at the top of a cliff and start throwing dinner plates like frisbees.  Jumping with joy as they smashed to hundreds of pieces on the hard ground below.  But then, I don’t have a lot of extra plates just laying around for a good smashing.  I’m sure someone would also tell me that destructive acts aren’t the way to deal with my emotions.  It makes me wonder.  Do the people that give that sort of advice to people ever have any fun?

Maybe this has helped.  I just yawned.

If you didn’t know, I love the television show “So You Think You Can Dance” that airs on FOX. It also is no secret that I have a tendency to have extremely vivid dreams. However, when desperate measures dictate the use of prescription sleep aids, those vivid dreams have a high incidence of transforming into dramatic hallucinations. Having been depraved of sleep for several weeks, I have been trying to glean every possible minute from a night with the help of Ambien CR.

In any case, the SYTYCD finale show included one of my favorite choreographers, Wade Robson. He choreographed the following group performance which is a song titled “Homage to the Rabbits” by Eric Serra. It is from the Cirque du Soleil’s production, “Criss Angel Believe.”

\”Homage to the Rabbits\”

Suffice to say, the bunnies have been around every night since. While they seem somewhat menacing in the performance, I’m quite happy to say they’ve been nothing worse than a bit exuberant and jovial in hallucinated form. They’ve had quite the fun over the last several nights dancing in the living room, out on the back lawn, etc. Hmmm. Now I’m hungry for carrot cake. With raisins. And lots of gooey cream cheese frosting. Yeah, think anyone can arrange for that? That helps fight off MS exacerbations. Right?

I’ve had a great deal on my mind of late. There is so much I’m now open to sharing and discussing that for weeks I’ve struggled to admit to even myself. Slowly I am going to peel back the various layers that I’ve been hiding behind. It won’t be overnight and will more resemble one of those ancient Tootsie Roll Pop commercials. Just how long it’ll take to get to the center will be a while. There won’t be any owls participating.

Today was the third of what will be 5 consecutive days of Intravenous Solu-medrol treatments. Solu-medrol is a corticosteroid that is considered the gold standard in treating accute exacerbations of Multiple Sclerosis. For quite a while I refused to admit to myself or others the reality of the situation. This is probably the worst exacerbation I’ve ever had with my disease. In any case, I’ve come to terms and am taking all the steps available to make progress. As time passes it shall become evident whether or not things will stabilize, progress, or maybe even digress.

At this time of night, I’ll go ahead and end. It’s late. I’ve had more than my fair share of prescription medications. If I don’t fall asleep soon it’s entirely likely I’ll be visited by human sized dancing bunnies compliments of Wade Robson. That’s for another post.