What The Hell is Happening to Me?!

scream

My response to the treadmill incident was to ignore it. I had no idea what had just happened, instinctively knew it was bad, but my inclination has always been never to worry about something unless I absolutely have to. The episode was short-lived after all and might never return, so why bother?

Two weeks later curiosity got the best of me and I returned to the treadmill, the same thing happened, and I still ignored it.

This ignorant bliss came to a crashing halt several weeks later when I ventured outside to mow the lawn for the first time that spring. I don’t have a big yard, but the house was built on a slope, so the terrain is slanted and the landscaping made the lawn better suited for a push mower. So I grabbed the trusty self-propelled mower, ventured outside and experienced something I will never forget.

I had to stop several times because I lost control of the limb like I did on the treadmill, but it was infinitely worse. I was not on smooth, flat terrain you see, and I rolled the ankle over on three different occasions, once so bad I thought I might have sprained it. When the job was finished, I literally dragged my leg and the lawnmower to the garage. It took much longer for the symptoms to subside, but they did not completely go away this time. I was left with a slightly drooping foot and a very slight but discernible limp.

My bubble had been burst. Fear and panic began to worm their way into my comfortable cocoon of denial, and I wanted to scream. What the hell was happening to me? When I was in the throes of whatever this was, I didn’t have any pain, but the limb simply didn’t function. I didn’t have any point of reference in regards to what this could be, but I knew I had to do something. So I went to an orthopedist.

Tight hamstrings. That was the verdict after I explained the situation and he finished putting me through the paces and examined me, which took only ten minutes. My reaction, although I didn’t say it, was “are you fucking kidding me?” It was humiliating because the guy obviously didn’t have a clue but couldn’t admit it, and probably thought I was a hypochondriac. Being the dumb ass that I was, however, I religiously performed the stretching exercises he gave me for a couple of weeks and it did absolutely nothing in terms of improving my limp or foot drop.

By now I was really beginning to panic. I sensed it was something muscular, and for some reason grasped upon the thought this might be the beginning of Lou Gehrig’s Disease (ALS), which terrified me. I rarely obsess, but could not get this thought out of my head.

By this time, K was becoming concerned as well. I had hidden the entire thing from her until the lawnmower incident, but fessed up afterwards because she could obviously see what was going on. She also tends to worry more than me, so I did not share my ALS concerns because I didn’t want her to go down that rabbit hole.

I knew nothing about neurologists at the time, admitted that I didn’t know what to do, and she suggested I see my chiropractor. After all, he had always helped my occasional lower back issues. Maybe he’d have some insight that more mainstream clinicians didn’t.

So to the chiropractor I went, explained what had happened, including the ortho disaster, and he spent the next hour examining me in a variety of ways. When it was over he said I needed a MRI, and it would provide the answers we were seeking. He also referred me to a neurosurgeon he knew, and told me to make an appointment. I didn’t know it at the time, but he suspected I had a tumor on my spine that needed to come out.

Two weeks later, he called me with the MRI results, explained what they showed, used the term “lesions” and “demylination,”and told me that should I cancel with the neurosurgeon and find a neurologist instead. Afterwards I looked up both terms on the web and saw they were fingerprints of MS.

Although I had not yet been formally diagnosed, in my heart I knew I had MS, and was glad to finally have a name to what was ailing me. Although I knew nothing about the disease, I honestly thought it wasn’t a big deal, and minimized the implications, just like that first time on the treadmill.

What a fool! After I was formally diagnosed and the symptoms became progressively worse, I realized this disease wasn’t to be taken lightly. Once I found the neurologist I’ve been with for about eight years now, I was able to get a handle on it and retard the progression. It obviously has not stopped, but the pace of the progression is nothing compared to those first three years.

Knowing what it was with forced me to plan for a future that had suddenly possessed a lot of uncertainty. But at least I had the keys to the car that would take me down that road.

My First Time

shock

There are very few events in my life that I vividly remember: my wedding day, the day my son was born, and where I was when I first saw the images of the 9/11 attack that brilliant late summer morning in Connecticut, come to mind. They are all etched in my memory so clearly, that not only can I recall images of the occasion, but emotions, smells and things of that nature. Perhaps this is because they were so profoundly momentous and meaningful.

The day MS entered my life is also on that list. My first time, as I like to refer to it, occurred out of nowhere like an unexpected and unwanted bolt of lightning. Of course, I didn’t have a clue  what was going on at the time, or that it represented the beginning of a life-altering journey.  Be that as it may, the experience was so shocking, and the consequences so profound, how could I not remember it?

Ten years ago, I dragged my lazy ass downstairs into the cellar early one Tuesday evening, and stepped onto my treadmill for a long-overdue workout.  I had been in good shape for most of my life and, while not a fitness fanatic, worked out more often than not. For some reason, I had fallen into a rut and had not touched any exercise equipment for over a year, and was getting soft in a lot of places I didn’t like. For months I had vowed  to resume working out because, as a creature of habit, I knew all I had to do was get started and it would become part of a regular routine.

So I seized upon the thought to take that first step, ventured downstairs, strode onto the treadmill, and turned it on. Back in those days, my typical workout consisted of a ten minute warm up, followed by forty-five minutes of gradually increasing speed before concluding with five minutes of winding down at much slower speeds.

On that fateful evening, I didn’t make it past the first ten minutes. Shortly before the warm-up concluded, I felt a strange sensation in my right leg. At first, the leg felt heavy, as if a large weight was strapped to it. My reaction was to increase the treadmill speed, thinking it might work the kinks out. Bad move. In less than thirty seconds, the leg went from feeling heavy to being completely unresponsive.

The only way I can describe what I thought was going on in that moment, is that my leg simply stopped working. The knee wouldn’t bend, my foot wouldn’t lift, and I literally couldn’t control it. The limb felt as if someone had sucked the bone from it, and what remained was a limp, lifeless, piece of emptiness. Keep in mind this all occurred within a matter of seconds, and my mind didn’t have time to understand what was going on. All I knew is something was terribly wrong.

I also sensed that I needed to get off the treadmill immediately. I therefore grabbed onto the bar in front of the machine’s control panel, hopped to get my good leg planted on the side rail, swung my bad leg over by swiveling my hips as hard as I could in the direction of my good leg, and let go of the handrail, all one motion. I didn’t realize it at the time, but my balance was shot. I unintentionally lurched forward, tumbled off the machine, and onto a sofa that fortunately was within falling distance. Once my upper torso hit the sofa, I was able to brace the impact with my arms and roll onto my side. Whether I consciously knew what I was doing at the time is debatable. In hindsight, I think instinct took over and allowed me to assess my surroundings, and find a safe landing without really hurting myself.

As I sat upright on the sofa, the lifeless limb was bent at an odd angle, and I had to grab it at the knee and calf to place it in a normal position. My heart was meanwhile thumping in my chest and temples. I tried to curl my toes and move the foot in a circular motion at the ankle, but it would not budge. All I could think of was what the hell is happening to me?

I remember wondering if this was real or a bad dream, but not much else. After about fifteen minutes of sitting there doing nothing but ponder my fate, and I know this because I glanced at the wall clock, it occurred to me that the leg was working again. I could curl my toes, bend my knee, and stand up. All the strength and sensation had come back like magic. I strode back and forth across the room without any issues and sprinted in place, lifting my knees as high as they could go, like a sprinter warming up for a race.

Everything was normal, and I was confused as hell.

I turned off the treadmill, sat back on the sofa and one thought came to mind. “What the fuck was that?!” This was followed by, “what am I going to do?”, and “Who am I going to tell?”

The answer to those last two questions was nothing and nobody. Everything was back to normal, so I decided to ignore the event and pretend it didn’t happen. After all, what transpired was probably a complete fluke, and would never happen again.

Obviously that wasn’t the case. I tried the treadmill again two weeks later and the same thing occurred, only this time I was prepared for it, and stopped the machine once that strange sensation started coming back. Another difference was my foot started drooping and never fully recovered.  An attempt to mow my lawn a few weeks later forced me to accept the fact I could nor longer ignore whatever this was. Thus started the quest to find out what was wrong, which I will share in next week’s post.

Looking back at the event now, it seems so……innocent. I was so naive back then and felt bulletproof. Little did I know that my life would never be the same.

The Guilt of Living with a Chronic Disease

guilt

The most unexpected emotion I’ve encountered living with MS is feeling guilty about it. It’s infuriating because I obviously didn’t sign up for this. And I know the cliches: it isn’t your fault, you can’t blame yourself for this, shit happens, blah blah, blah blah blah. I get it, but that still doesn’t negate the fact that guilt is one symptom of MS I never expected, and it pisses me off.

I don’t want to give the impression I’m consumed by this, because I’m not. I also understand this sentiment is irrational. After all, I still work and “provide” in that sense.  I’m not an invalid by any stretch of the imagination, and I contribute to running and maintaining the house any way I can. An argument can actually be made that I too often push myself more than I should. So from an intellectual perspective, I understand that there is absolutely nothing to feel guilty about.

Unfortunately, the emotional reality keeps getting in the way, and often strikes like a lightning bolt.  First of all, I’m obviously not the guy I was ten years ago, and no matter how you rationalize, I can’t escape the truth that I can’t do a lot of the things with my loved ones I once took for granted. Simple things, like going for walks and riding a bike, are difficult to do and in some cases are impossible. Even holding hands while waking is hard because I trudge very slowly, and it throws my balance off.

I need more physical space than the average bear to maneuver, and people in the know  often step aside or give me the right of way in tight quarters because they know I don’t walk in a straight line, can’t stop on a dime, and they don’t want to bump into me and potentially cause a fall. Add that to the list of things to feel guilty about.

I’d wager that watching the freak show of me doing anything that requires physical dexterity is painful for anyone who looks. I know K worries about me constantly, and I suspect my son does as well, although he never broaches the subject. So I feel guilty about that too.

Maybe I’m projecting subconscious insecurities about my present and future onto others. Maybe this is a subconscious way of feeling sorry for myself, but I sure as hell hope not because I swore I would never to do that.

As I’ve grown older, I’ve discovered that my father and I are two peas in a pod, and this is a perfect example.  He never wanted to be in a position where people had to cater to him because of failing health. He’d tell us more times than I care to remember that if we ever found him unresponsive, to make sure he didn’t have a pulse before calling 911. Of course, Dad was in his 90’s by then, and never thought he’d make it that far. He had been blessed with good health all his life and was sharp as a tack until he passed away at the age of 96, but the chinks in his armor started appearing several years earlier, and that concerned him.

The bottom line was he never wanted to have anyone disrupt their lives because of his health. I thought he was being ridiculous at the time, but I certainly get it now. He didn’t want to deal with the guilt of being a burden, and that is the crux of the issue for me.

I don’t care what anyone says, when you live with a chronic illness like MS, you become a burden, because people in your life have to pick up the slack for the things you can no longer do. They might not think of it that way, but I do.

Guilt comes with the territory. I don’t believe I’m the only person living with a chronic condition who feels that way, but would love to know if I’m in the minority.

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.