Month: January 2018

Dreams and the Freedom From MS

dreams2

My wife, who I will refer to as K from now on, and I were discussing the blog during a drive home from the mall last weekend. I reminded her that she had offered to author a post or two this year, and provide the perspective of a spouse living with a person who has MS. You see, the hardest thing about this blog is discovering a topic each week that is new or different. I was having trouble coming up with a subject I could write about, and thought she might offer to rescue me and pen this post herself. Instead, she asked the following:

“Do you have MS when you dream?”

The light bulb went off immediately, and I knew I had my subject for the week. I pondered the subject for a few minutes, and it got me thinking.

After all, I am MS free in my dreams. I don’t limp, I don’t fall, and I am not hindered in any way. Not one iota.

But why hadn’t I thought about or acknowledged this before? Shouldn’t I have? After all, in my dreams I have I’ve run freely, climbed mountains, danced, golfed, and have been a  sexual dynamo. There is virtually nothing I can’t do in my dreams. I am completely free from the chains of my earthly limitations. I can’t recall one time where my conscious reality has punctured the fantasy of my dream world.

This epiphany was both liberating and perplexing. Liberating from the perspective that I know there is one time each and every day where I am a normal human being (at least physically), but perplexed about why I have never considered this before.

Maybe I haven’t thought of this because doing so would only emphasize what I have lost. Maybe it’s a defense mechanism that prevents me from missing or dwelling on what I no longer have. Maybe it’s because I’ve long come to terms with my reality and don’t mourn about what I no longer have. Or maybe I’m not that deep a thinker.

It has almost been a week since K asked that question, and I still don’t wake up in the morning and think about or embrace the physical freedom I just experienced. It simply does not cross my mind. Is that a weird?

Shouldn’t I relish, enjoy, and try to remember what it felt like to be free of this disease.  I believe all of us at various times have realized that we are in a dream, and that what is happening isn’t real. Can we actually make that happen? Is it possible to become more present in our dreams, and acknowledge what we are experiencing?

I’ve already written that getting out of bed is the most physically challenging portion of my day.  Maybe having that ability would kick start the day on a good note.

Perhaps none of this really matters, but now that I have thought about the subject, it would be nice if I could pay more attention to and be more there in my dreams, because I honestly don’t remember what I felt like before MS wrapped me in its tentacles.

I would enjoy reliving the experience.

 

 

 

The Winter Blues

blues

Snow.

Ice.

Wind.

Bitter Cold

Long, dark days.

I don’t generally complain about the winter or yearn for spring until after the Super Bowl, but here we are in the middle of January, I am so done with winter, and I’ve felt this way for weeks. I also don’t normally dwell on these kinds of developments, but this one has got me thinking because I think it’s significant.

While our snowfall this year is above normal, there have been much snowier winters within the last several years. The darkness thing is irrelevant because winters always suck in terms of the amount of daylight we get. It’s dark when I wake up, dark when I arrive at work, and mostly dark when I get home, as we have gained an hour of daylight the last few weeks. Still, I was watching television the other night and glanced at the clock, which read 8PM. It felt like it was 11PM.

It has been colder than a witch’s tit so far this winter, but the same can be said for most of this country, I think. We’ve had more wind-chill warnings than all of last year, and more than in recent memory. The ice doesn’t melt, and the wind cuts through one’s garments and bites at your skin. This is one of the reasons why spring can’t get here soon enough, but that isn’t the main reason.

The sad fact is this winter has been much harder hard physically than any winter I can remember, and I take that as a sign that there has been a fundamental change in how my symptoms have progressed. Everything has been a little harder this year, travelling for one, but I can manage most of these situations. Winters, unfortunately, are different. Walking outdoors often feels like negotiating a mine field. Since everything has  remained frozen for longer periods of time, each step represents a potential disaster. If I fall during any other season, it’s usually my fault for not paying attention, and it’s because of something stupid. The falls aren’t severe as I don’t lose complete control of my body, which give me more ability to protect my body before it hits the ground.

But falling during the winter is usually a true accident. Since I am paying close attention to every step, any mishap is a complete and sudden surprise caused by a patch of black ice I don’t see, or the rubber tip of my cane sliding off something slippery. Either way, result is a violent and suddenly unexpected shift of balance, which prevents me from positioning and cushioning my body before it hits the frozen terrain. Under these circumstances, the chance for broken bones, shredded ligaments, or both, is greater.  Neither has happened, and hopefully won’t because I’m hyper-focused most of the time when I am outside. But there have been a couple times moments so far this year where I was on the verge.

If that wasn’t bad enough, the constant toothache in my lower back and hip prove that my body is protesting more than ever before. I’m sure the extra strain on those areas  from not having the strength in my legs when I’m  working outside doesn’t help. More than any other year, the winter of 2017-2018 has become a test of endurance, both physically and mentally

So yes, I am fantasizing about spring and summer, but summer is no bargain either. Heat and humidity is no longer a friend of mine and can sap my energy in the blink of an eye, but it is easier to navigate without the snow and ice. Besides, I have always preferred sweating over freezing. At least you can wear comfortable clothes.

There isn’t a lot I can do for now other than complain. I’m not going to relocate south because the summer heat would kill me, and New England is my home. As I have mention in earlier posts, moving to a more MS friendly house is high on our list of priorities, but all that will do is make indoor and outdoor maintenance easier. It won’t change anything as far as navigating winter roads, driveways, parking lots, and sidewalks are concerned. It won’t stop the cold and won’t prevent having to deal with snow and ice.

We can spend January through March in warmer weather climates, but I don’t have a job where I can work from home all of the time. I am also, health permitting, seven to eight years from retirement, so that option won’t be on the table for a while.

At least it is supposed to get into the fifties tomorrow, but if the trends continue the way they have so far this year, it will be in the teens again soon thereafter. So much for a January thaw.

Alas, I’m stuck with having to endure winters for the foreseeable future, and have eight more weeks of this shit to endure before spring officially starts. I’ll manage, what choice is there?

And I will probably bitch and moan about the heat and humidity come summer.

 

Public Restrooms – A Rant

toilet

After enjoying a blogger’s tale of woe about someone’s inability to place clothes in a hamper, and the lengths she has gone to correct this character flaw, I began thinking about one of my pet peeves. Why are public restrooms are so disgusting?

Most of the men’s rooms of the employers I have worked for aren’t hideous, but as the day progresses, a parabola of pee appears on the floor in front the urinals. They start out as random drips and evolve into mini-puddles. It isn’t big deal for most people to avoid these, assuming they notice them, but for someone who has walking and balance issues, they can pose a challenge. I don’t want to step in the stuff, but sometimes the liquid is positioned in such a way that I have to almost straddle the urinal or contort my body in some fashion to keep my feet on dry ground. Therefore, I need to select the urinal that will allow me to keep my feet fairly close together, which is typically the one that is farthest from the entrance because it is used the least. Finding pristine floor space can be more of a challenge if there aren’t a lot of urinals in the room.

I try to be coy about it, because I would be embarrassed if someone saw me examining the floors before deciding where to go. But since my balance is so bad, I need to keep my feet fairly close together to stay upright without the aide of a cane, and, you know, my hands are otherwise occupied. So unless someone can tell me how to grow a third arm, I use as much stealth as possible when making my selection if others are in the room.

Be that as it my, why are the drips/puddles there to begin with? I mean, this is not a complicated process.

Why don’t you just go into one of the stalls, you might suggest. There are two reasons. The first is I need more space than the average bear. The handicapped stalls are limited, and you’d be surprised how many non-disabled people use them. I don’t know if it’s because they are claustrophobic or like to spread out, but the reason is irrelevant. The main reason why I avoid the stalls, especially later in the day, is because they can be disgusting.

I’m not going to get into the details of some of the stuff I have seen, but let’s just say that there can be all sorts of shit, figuratively and literally, laying about. It’s almost getting to the point where disposable hazmat suits should be available for all who enter. Oxygen masks would help too.

And if you are at a large venue, like a sports arena or stadium, forget it. Those are the epitome of filth. Bars too!  Maybe that’s because  people can’t see or stand up straight from the alcohol they’ve consumed, but that’s being generous. I don’t care how polluted you are. How hard is it to aim, fire, and hit the target at center mass? Or sit where you’re supposed to? And if you aren’t hammered, shame on you! These venues also include stomach contents to the smorgasbord of stuff you can find in a different areas of their  restrooms.

And ladies, don’t think for a minute that men have cornered the market on being slobs. From the stories I’ve heard from other women, you are as bad if not worse than men at every level. Women’s restrooms also include a unique level of grossness that men can’t match. On two separate occasions at various places I have worked, women have bitterly complained about someone leaving a used tampon somewhere on the bathroom floor.

I know women who simply refuse to use a public restroom, but haven’t heard the same from men,  Maybe that’s because we have a higher ick tolerance. Either that or we’re too macho to admit it.

It this the result of laziness, nonchalance, or do people just not care?  Can it be bad parenting, brain damage, or are people too busy looking at their phones instead of  paying attention to what they are supposed to be doing? Are the perpetrators angry the world or their situation in life, and this a form of anonymous protest?

Whatever the reason, I pity the people who have the job of cleaning these cesspools every day.

Blizzard Brody Visits Connecticut

snow flakes

We had our second winter storm of the year yesterday. The talking weather heads wavered on their snowfall forecasts in the days preceding the event, but nobody expected Winter Storm Brody to morph into Blizzard Brody.

The flakes started flying in the pre-dawn hours and didn’t finish falling until late afternoon/early evening. Somewhere in the neighborhood of fifteen inches of snow fell. It was hard to determine how much we actually got because some areas had very little snow while others had drifts that were several feet high, compliments of strong, gusty winds, which whipped the snow around and created white-out conditions during the day. Needless to say, the wind chill was arctic. Fortunately, we did not lose power, which was my biggest concern because of the potential for freezing pipes.

As you know, I use these kinds of events as a measuring stick concerning my symptoms and progression. Snow removal of this magnitude had not been on the agenda for almost a year, so this experience would be a good way to gauge how I’m doing in terms of strength, balance, and general progression.  The verdict wasn’t good.

But it started out well. When I heard what was coming during the morning broadcasts, I heeded my wife’s advice to stay ahead of the storm, and cleared the sidewalks and the portion of the driveway our plow guy doesn’t touch before lunch. Our snowblower can handle a foot of snow or less, so if I waited until the storm was over before removing the snow, the blower might not have been much of a help. Getting rid of it in stages would make the evening removal a lot easier and less strenuous, or so I thought. Besides, I needed to remove the snow that had accumulated around the foundation and was threatening to cover the furnace vents, so if I had to bundle up to do that, why not stay outside and remove everything.

The task took a while to complete, but I came away from it in fine shape. Other than trying to open one of the doors that had been smothered in a snow drift, the task wasn’t physically demanding, and when I returned inside, I didn’t feel any different. Everything was working the same as it was before I ventured outside. So, when the snow finally stopped and it was time for round two, I expected nothing different. I knew there was a little more snow on the ground compared to the morning, but my son was going to do all the heavy work in the form of shoveling and getting rid of the stuff the town’s snow plows had dumped onto the sidewalk. All I needed to do was navigate the snowblower and clear the rest.

I was also better prepared, as I once again listened to the wife and wore both the AFO brace and the knee brace, which I didn’t bother with earlier. Everything was strapped on good and tight, so I felt confident that I wouldn’t have to worry about slipping or hurting myself.

It didn’t take very long to realize round two was going to be a struggle. Right from the start, the ankle kept turning to the right, and the knee followed. Planting the foot to get any push off of it became extremely difficult. The leg weakened quickly, and the balance followed. Like an inchworm, I was literally stepping forward with the good leg, and dragged the bad one behind it. With a little practice, moving straight ahead became easier, but turning and backing up was dicey. When the task was finally done about an hour and a half later, I couldn’t bend the leg at all. The weirdest thing was my bad leg actually felt shorter than the good one, perhaps because I couldn’t keep the ankle or knee straight. It was a good thing my son was there to do the shoveling, because I don’t think I would have been able to do it and remain upright. My balance was that bad.

When I finally made it inside, I had to sit on a chair to shed my winter garb, which was a first, and my wife had to remove my boots, also a first, because I could I couldn’t lift the leg, which was completely limp.

Fortunately, the snow was of the fluffy and dry variety, which made the job easier.  Having said that, my lower back currently feels like an alligator is chomping in on it, and my hip is barking. Both will feel worse tomorrow because the discomfort is always worse on the second day. Plus I had to do a little shoveling when I arrived home from work today, because tomorrow is garbage day, both of the containers were buried, and my son is not home.

Was last night’s experience the result of fatigue at the end of a long, busy day? Perhaps, but as I sit here twenty four hours later, the leg is still pretty weak, the ankle remains shot, and my foot is constantly drooping. I realize this sounds ludicrous, but I sometimes wonder if I’d be better off with a prothesis instead of a limb that feels like a lifeless piece of meat. At least I’d have more strength and better balance, or at least I think I would.

Is this a progression or simple weakness from a limb that isn’t used to working that hard? I have no idea, but suspect it’s more of a weakness issue because I have a similar experience when I get off the exercise bike after thirty minutes. At least I hope it is, because if this is my new normal, it is going to be a very long winter.

Temps are currently in the single digits and the wind, while not as brisk as yesterday, is enough to make the wind chill dangerous. It is bitterly cold out, so the snow will not be melting any time soon. I’ll need a week to recover from this episode and hope we don’t have another storm before then. And the next time it does snow, I hope we get less than a foot so it can be removed all at once instead of in multiple stages.

I know there will another big storm this winter, but pray we won’t have a repeat of four winters past, when it snowed every week for a couple of months, including one whopper of a storm that buried us with almost three feet of the white stuff. The piles of snow from the plow and snow blower became so high and wide that it got to the point where if it kept snowing, it would have been impossible to put it anywhere. Of course, that was four years ago, and my leg was a lot stronger than it is now, and my balance was infinitely better. If we were to ever have a winter like that again, I have no idea what we’d do.

Pray for hot rain, I guess.