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.

 

 

All I Want For Christmas

Santa

With apologies to Donald Yetter Gardner

All I want for Christmas

Is my two good legs

My two good legs

Just my two good legs

Gee, if I could only have my two good legs

Then I could say goodbye to needles

 

It seems so long since I could say

May I have the pleasure of this dance

Gosh, o gee

How happy I’d be

To walk without annoyance

 

All I want for Christmas is my two good legs

My two good legs

Just my two good legs

Gee, if I could only have my two good legs

Then I would be a happy camper

 

Back when I had two good legs

There wasn’t anything I couldn’t try

But now when I exert myself

It makes me want to cry

 

All I want for Christmas is my two good legs

My two good legs

Just my two good legs

Gee, if only could only my two good legs

My spine would have all of its myelin

Then I’d could embrace every season

Then I’d feel blessed beyond all reason

 

MERRY CHRISTMAS EVERYONE. I hope Santa treats you well, that you are surrounded by love, and bathed in happiness.

 

 

 

 

 

 

 

 

 

 

Ice

pexels-photo-267144[1]

I’ve never been a fan of winter. Having lived in New England for most of my life, I do enjoy having four distinct seasons, and I love the sight of the snow falling outdoors, provided I don’t have to commute in it. White Christmases are wonderful, but those have been a hit or miss proposition over the years. Before MS entered my world, I enjoyed frolicking in the snow, engaging in snowball fights, sledding down a steep hill, and even removing snow from the driveway and sidewalks, at least some of the time. I don’t mind the chilly temperatures. but could do without the bitter cold and wind. The truth is, once the Super Bowl is over, I’m ready for spring, but February and March seem to last forever.

Getting around during the winter could be cumbersome at times, but it was never unmanageable.  Over the last several years however, clearing portions of the driveway and sidewalks have become progressively more difficult. So has been getting around on a snowy terrain. Nonetheless, there wasn’t anything winter could throw at me that I couldn’t handle, until this year, that is. There is an old foe that I have succumbed to, whom I no longer bother trying to challenge. That foe is ice.

Ice has become the bane of my winter existence. We rarely get ice storms, but the snow invariably leaves frozen stretches on my driveway and sidewalks regardless of how well they are plowed or cleared. Plus, the snow often turns into slush, which freezes easily.  Worst of all, the snow on or surrounding these surfaces melt during the day and re-freeze at night, leaving a flat, frozen, and often invisible slick of black ice that can easily take me down. And if there is a melt followed by a long stretch of subfreezing weather, the ice can linger for days, but I digress.

We received our first snowfall of the year last week. It wasn’t a large accumulation, and the snow was easy to remove. The next day was clear, the sun was bright and a lot of the snow melted. When the sun set, the temps dipped below freezing and the standing water froze solid. I ventured outside the following morning to move something in the back yard, and had to cross the driveway to do it. On my way there, I mistakenly stepped on one of those frozen slicks and stopped dead in my tracks.

I used to be able to simply shuffle my feet along an icy surface to get where I needed to go, but the deteriorating balance has made that more difficult. What little strength or control I have in the bad leg is rendered moot by a slick surface, and the good leg, which handles most of the body weight, tends to slide more on icy surfaces because of the weight it handles. If that slides out from under me, I would lose complete control and the results would be both comical and ugly.

Unfortunately, I was on a slanted surface, and I soon learned that negotiating icy surfaces that are even remotely slanted is impossible. Gravity takes over, my body starts leaning, and my feet started sliding. Even my cane was rendered useless because rubber-tipped canes have no traction on ice.

I was literally stranded on what looked like a four by four section of driveway, and I was completely helpless and vulnerable. I couldn’t crawl, because that meant I would have to move my feet to get onto my knees, but if I did that, they could slide out from under me. I couldn’t gingerly slide my feet either because the bad leg was on the downhill slide of the slant and kept moving in that direction. I could see myself doing a split on the ice, tearing my groin and hamstrings in the process, howling in pain.

After the initial panic subsided, I saw that all I had to do was reach over, plant the cane into a small pile snow that was within arm’s reach at the edge of the driveway, and pull myself off across the remaining two or three feet without having to lift my feet off the ground. Once I was on solid, snow covered ground, I waddled a few feet down the snowy lawn until I reached a flatter, unfrozen section to the driveway, and made my way back into the house.

With ice, every step is an disaster waiting to happen. It snowed again yesterday and left a thin film on the driveway and sidewalk. When I went to get the mail, I swear I heard the theme from the movie Jaws playing in my head, except the slick sidewalk was lurking  instead of a Great White Shark. It didn’t bite me this time because the snow that covered parts of the walk did not have an icy foundation, and my feet could easily grip the snowy surface.

Public parking lots and sidewalks are even worse. At least I can to a certain extent control how well my home base is maintained when it comes to snow and ice removal, but all bets are off in pubic areas. At least the handicap parking areas are close to most entrances, provided some yahoo hasn’t decided to take the last open spot to park in because there wasn’t an open space nearby.

I once toyed with the idea of  moving to a warmer climate when my working days are over, but as much as I dislike being cold and dealing with the snow, heat and MS are not a good match, so I don’t see myself leaving New England permanently. Maybe finding a more temperate place to live from January through March is the next best thing.

Either that, or I need invest in a lot of driveway salt. Maybe wearing a helmet, shoulder, elbow and knee pads when I venture outside would be a good idea too!

The Hardest Part of My Day

dressed

I love sliding into bed at night. By that time, my body is tired and stiff from having to carry itself on one good leg throughout the day. My hip is sore, my lower back is barking, my foot is dragging terribly because I can barely lift it, and my knee won’t bend without a significant effort. In fact, it is ramrod straight, and almost feels like it is hyper-extended, although it doesn’t hurt.

When I slide under those soft, warm covers,  I can feel my body exhale and melt into the mattress. It feels like I’m weightless, and this poor body, that has trudged and wobbled around all day, finally has a chance to lay prone and release the pressure that has coiled inside it.

The flip side of this is that I have to drag my ass out of its warm cocoon the following morning, which is often the most difficult accomplishment of the day.

First of all, it’s a struggle moving in bed, other than the periodic leg twitching. Turning onto my side is an endeavor, particularly when I turn to my left. The only way I can accomplish that is to reach across the mattress, grab onto its side with my right hand, and literally pull myself onto my side. Turning to my right is easier, but instead of grabbing the mattress, I have to tuck my right arm behind my back and flop over onto my side, like a fish out of water. I therefore have a tendency to sleep on my back all the time, which has forced me to sleep with a pillow under my knees to prevent my back from getting sorer and stiffer, which further complicates the turning process.

So by the time my alarm alerts me to the new day, my body is fully rested, but it also feels like it’s one hundred years old. You see, I can’t just sit upright from a prone position anymore, and as I have already mentioned, turning on my side isn’t as easy as it sounds. Getting out of the left side of the bed is almost impossible, so after I turn to my right, I literally have to shimmy my lower half to the side of the bed, push myself upright, then gently grab the bad leg and place it on the floor. The good leg easily follows.  That’s the simple part.

My leg is the weakest first thing in the morning, so I feel like a newborn colt when I stand for the first time every day. They are also unsteady and, like the colt, it looks as if I am learning to stand and walk for the first time. Compound that with poor balance, which is also at its worst first thing in the morning, and I’m sure I look like a staggering drunk as I make my way to the bathroom. I literally have my right hand on the wall from the time I get out of bed until I reach the bathroom, and there have been many times where that short distance from the bed to the wall almost ended in failure. It feels like gravity is doing it’s best to suck me down onto the floor, but it hasn’t happened yet.

I am a lot steadier when the morning bathroom routine is completed, but the limb is still very weak. The next mountain to climb is getting dressed. Getting my clothes on above the waist is a piece of cake, but not so much with the lower half. Underwear used to be an issue until I learned that the easiest way to get them on was to simply grab the bad leg by the ankle and place it where it needs to go. Same with the socks, but there are two complicating factors in play.

The first is that I am not flexible at all, and I don’t think any amount of stretching, which is hard to do in the first place, will change that. If you have ever strained your lower back, you how difficult it is to put any article of clothing on your legs or feet. That’s how it is for me, minus the searing back pain. Some mornings, the body is so stiff that it feels like the act of getting my leg high enough, and bending my body forward enough to get my socks on, will result in a hernia, a rupture, or a complete blowout of the lower back. Maybe all three.

Then there is the balance issue. Most people think that balance is an issue when one is standing, but it can also be a problem when you’re sitting. When I’m getting dressed, if my butt is to too close to the edge of the bed, and I’m leaning forward a little too far, gravity will take over and I’ll crumple to the floor. Falling is embarrassing enough when you’re upright, but falling when you are already sitting down would be the ultimate humiliation, even if nobody is there to see it. It hasn’t happened yet, but I have come close several times. Mostly when my mind is somewhere else.

So now the chore is almost complete. I am fully dressed and ready to take on the new day, but before that can occur, I have to take my first trip down the stairs. This is the most perilous thing I do all day, not only because of the unsteadiness, but also because I have my socks on, which tends to make the wooden stairs feel very slippery. Plus, it is dark, so I make sure to count every one of those fourteen steps until I reach the ground floor. One hand is firmly on the rail and the other is sliding along the wall when I make that trek, which helps not only maintain my balance, but will keep me upright if the foot slips or the knee doesn’t bend and I lurch forward unexpectedly. As you can tell, I fear falling down those stairs. I don’t think it will ever happen, but I believe that if I were to ever suffer a life-threatening MS related mishap, falling down those stairs would be the most likely scenario.

Once I’m downstairs, all I have to do is get my stuff together for the ride into work, followed by the final act of putting my shoes on and tying them, which often takes two or three attempts. You see, the AFO brace I wear is in that shoe.  I have to hold the leg by the calf and aim my toes into the shoe. Once they are in, I can lean forward, hold the back of the shoe with my fingers and slide the rest of my foot in, before I tie the strings. I’m sure this process looks very odd to someone who witnesses it for the first time.

Now I’m golden. The stiffness that existed twenty minutes earlier is gone, and my strength and balance is starting to come back, although it will take another hour or so to reach maximum capacity. I’m ready for the day and all that comes with it.

By day’s end, the body is once again tired, ragged and spent. I’m off my feet for most of the evening after dinner and the evening chores are done. My rocker recliner calls and welcomes me as I watch television with my wife. Once it is time to turn in, the legs protest having to carry my 190 plus pounds once again. It actually feels like a thousand pounds, but I shuffle up those stairs one last time to start the bedtime routine, then slide under those blessed covers and let the tension melt away. It has become my favorite time of the day.

I wish I could say the same thing about the next morning, but one has to look at the bright side. At least there is a next morning.

Tell Your Mind to Shut Up

scream

The brain is an amazing organ, a super computer that far exceeds anything technology can fathom, and hopefully never will. On the medical front, numerous clinicians have told me it is the final frontier, the one true mystery that remains to be solved, certainly not in my lifetime. Perhaps never.

The brain controls everything, and is also a focal point for those of us who suffer from MS. Some of us have lesions on the brain, some of us have demyelination of the spine, and some of us have both. Today’s focus however is not on the physical aspects of the brain and how it relates to us, but the mental aspect. If we let our imaginations run wild and generate fear and anxiety about our present and future, we aren’t doing ourselves any favors. Simply put, we have to tell our minds to shut up.

Easier said than done, admittedly. We can’t change our DNA, or how we are hard-wired. Some of us are more anxiety-ridden, or prone to bouts of it, than others, while some are better at letting things slide. But nobody who has a chronic illness is exempt from thinking about the implications of their reality. Even those  who are more kumbya and better at letting things slide struggle from time to time, and I am a textbook example of that.

I’ve stated a number of times that my attitude is not to dwell on the what-ifs or the why-me’s, and I stand by that. I try to keep my condition at arms-length, and lock it inside a secure vault somewhere in the recesses of my mind. However, there have been and continue to be times where the doubts, which I call Messi*, break free of the vault and run amok. I can feel the physical fallout when that happens, and the struggle is to corral Messi and drag her sorry ass, often kicking and screaming, back into the vault, and double the locks.

For instance, when the symptoms first started to appear and I wasn’t yet diagnosed, I didn’t have a clue what was going on, but I knew it wasn’t good. One train of thought was that I might have ALS, which really freaked me out. It was actually a relief when I learned it was “only” MS.

Every time there was a new twitch or strange sensation, Messi started speculating on what it meant, and it was never kind. As my progression slowed with the help of a good neurologist and the drug/apheresis routine he placed me on, I came to terms with my condition. I set it aside and worked hard to not let it rule my life.

Still, when something changes, I hear Messi growling. For instance, when the progression rose above the knee and made everything harder, it was hard to ignore. I started doing the math, which went something like this: I’ve had this for ten years, and for the first two the symptoms progressed quickly, stabilized, then progressed again this year to where it is now. So that either means I’ve got another ten before I really have to start worrying, or it means that I’m wheelchair bound in two to three. Therefore, I need to do a, b and c. But what if it happens more quickly? What happens if I can’t work, etc., etc., etc.

Here’s another example: I do a lot of keyboard work, and have always been able to type quickly and accurately. I never look at the keyboard. Once I got MS, I noticed a more typos, but dismissed it because they didn’t appear to be too many to dwell on, and thought I might be noticing what has always been there because of this new thing I was dealing with. Now, however, I can’t type a paragraph, and sometimes a sentence, without a typo of some kind. In fact, I’ve made four of them in this one sentence before I cleaned it up.  Does this mean the MS is beginning to progress into my hands, or is my keyboard getting old and decrepit? If I go down that particular progression path, I’ll be a basket case. So I deposited this concern in a separate compartment inside that vault, and will address it during my next neurologist appointment.

One last example: I participate in a number of message boards for people living with MS. I view myself as a MS veteran, and consider it important to give back and share my wisdom and experience, particularly to those who have just been diagnosed. Being part of these boards makes me feel useful, and also provides ideas for things to write about in future blog postings. Unfortunately, it also makes me realize how better off I am compared to what I read. There are so many people who suffer far worse than me, and are dealing with a lot heavier shit that I am in terms of family, relationships and other personal matters that I never considered. Messi feeds on that, and is begging to whisper “that’s going to be you” in my ear over and over again, trying to make me a believer. I know I have nothing to worry about on the family side of the equation, but the physical part? I already knew that everything they mention is part of the deal, potentially. But actually reading what people endure and what it does to their lives is more agonizing and makes it real. That could be me. Who the hell knows?

So it is a constant battle to keep Messi locked away and sedated, knowing full well one trigger event could occur that will unleash her, and perhaps make her impossible to contain. I don’t doubt the unleashing part of that scenario, but I would like to think that I will eventually be able to reel her in, somehow. Like I said, we are who we are, and I am a glass-half full, eternal optimist kind of guy. That will be my saving grace.

After all, we can’t change the cards we were dealt. Bemoaning our fate only shines a light on what we’ve lost, and can lead us down the slippery slope of what an uncertain future might bring. This train of thought only serves to add more stress that will stoke our anxieties and often raise hell with our symptoms. It’s fruitless and self destructive.

I saw a question posted on a message board recently that asked if we mourned the person we once were. I didn’t like what the question implied, because the me who didn’t have MS isn’t dead. I wasn’t body-snatched while everyone was asleep and replaced with a clone. I’m still the same guy, albeit one who limps like quasimodo seeking sanctuary, is in danger of falling every time he gets on his feet, is in danger of falling down the stairs if he isn’t careful (two more typos corrected), and has a hard time putting on and taking off his underwear, socks and shoes every day. I still have the same values, the same feelings, the stuff that made me the unique person I am. The only thing that has changed is my perspective. I’m not terminal, for God’s sake.

I’m fine with the premise that, in the words of a fellow blogger, it is okay to not be okay. https://msgracefulnot.com/2017/11/28/its-okay-not-to-be-okay/

And, I don’t see that changing, as long as my mind doesn’t provoke Messi.

 

 

*Messi is a play on words, combining the term MS with mess, which it does with my head. I refer to Messi as she because, in my opinion, females have the knack for pushing men’s buttons. I also believe while they are the more protective species in the animal kingdom, they are also more vicious.