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.

The Auto-Immune Irony

illness

The symptoms were subtle when I was first diagnosed, but after a few years into my battle with MS, the progression became steadier, and I began to use a cane whenever I left the house. The interferons I was injecting myself with weren’t doing a damn thing, and I had become dissatisfied with my neurologist because he appeared unsure about how to proceed. In fact, he once called another neurologist to confirm a thought he had while I was in the office with him. This didn’t inspire a lot of confidence, so I decided to make a change .

I work for a large health system, and when I asked my boss if he knew anyone in the MS field I should consider, he deferred to the organization’s Medical Chief of Staff for a recommendation, and was given the name of a neurologist close to where I work, who was reputed to be one of the best clinicians in the state. I made the switch, and later learned that he was the guy my former neurologist had called that day.

During our first appointment, he declared I should change medications, which made me happy. I had come to hate injecting myself, particularly when I didn’t notice any improvement whatsoever on the progression front. In hindsight, I don’t know why I agreed to take them in the first place, because I knew they were designed more for the relapsing remitting (RRMS) kind, than the progressive kind I had. Tysabri wasn’t an option because the blood test he ordered when I scheduled the visit indicated I had the JC Virus. After listing the options available to me, he recommended I start monthly infusions of steroids and a chemo drug called cytoxan.  Shocked might be too strong a word to describe my initial reaction, but I was definitely surprised and confused. I mean, how in the world would a cancer drug help me. It seems silly now, but all I thought about at the time was getting sick and having my hair fall out, and asked him if I would have to deal with that.

He assured me the dose I would be getting wouldn’t cause those side effects, and I would be given an anti-nausea med just in case. When I asked why he believed this was the appropriate way to go, he explained that MS was an auto-immune disease and described what that meant. To paraphrase,  my immune system had run amok, and my body was cannibalizing itself in terms of the demyelination  that had occurred. The chemo would suppress the immune system so it would stop attacking my body, thus putting brakes on the progression. This explanation made sense, so I consented to the monthly routine.

This decision was made with a lot of trepidation that I didn’t share, because I didn’t want to sound like a wimp (I don’t have that issue anymore). Part of the anxiety evolved from the fact that I would be getting monthly blood tests to check my liver enzymes, because the chemo had the potential to fuck up my liver, which thrilled me. There were other things they would be checking to make sure the chemo wasn’t doing more harm than good, but that was the one that I latched onto.

My other fear was I would become susceptible to every germ known to mankind, because I would be shutting my immune system down. Consequently, I assumed I would be sick all the time, catching colds and any flu bug or any virus that was floating around. I thought the winters would become an especially miserable, unending chain of one illness after another. After all, wasn’t this a logical assumption, given that my front line of health defense was going to be taking a siesta? I was afraid that the devil I didn’t know would become worse than the one I did, but hoped that the reality would be different, and that the treatment would turn out to be the lesser of the two evils.

That was seven or eight years ago, and I look back at that time with amusement. Why? Because the weirdest and most ironic thing that has occurred since I’ve been getting these infusions, is that I’ve been remarkably healthy. Unusually healthy, in fact. Just mentioning it makes me wonder if I am jinxing myself for the upcoming cold and flu season, but I can’t deny the truth.

When I first started the treatments, I may have encountered the occasional cold, sinus infection or flu. I can’t say for sure because I don’t remember those kinds of details from that long ago, but if they did occur, they were far and few in between. What I can say with absolute confidence, is the last cold I had was two or three years ago, and it was short-lived. I don’t remember the last time I was sick with the flu, had a stomach virus, or anything like that. Last year, everyone in my household had something, and had it on more than one occasion.  I also work in a large office, where everybody was sick at one time or another. Not me. I was the oasis of health in a sea of sickness at home and at work. I’m sure germs were floating all around me on a daily basis, yet I remained unscathed. It’s bizarre.

Is this pure coincidence? I think not. I believe that even though I’m trying to put my immune system to sleep, it remains overactive enough to shield me from the maladies that latch onto everyone else, yet not so active that the progression accelerates. I guess my neurologist knew what he was talking about.

This winter is going to test this theory, because I have switched to a new chemo agent that I will take every six months, instead of one Friday every month. You see, even though I didn’t get sick, I felt like I had the flu every Sunday that followed the Friday infusion, a parting gift from the chemo. This new drug will be administered twice a year and actually kills certain cells (T cells?).  I assume this means the drug is stronger, takes longer to get out of my system, which in turn means it takes longer for the cells that it kills to be replenished enough to give them another whack. My next scheduled infusion isn’t until March, so it will be interesting to see if I will enjoy another illness-free winter. Should that occur, how can I not conclude that my over-active immune system is like Pac-Man, gobbling up every germ seeking shelter before it can settle in my sinus or gut?

A definite plus, but I’d rather have two good legs.

 

Home Improvement

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Last Saturday evening, I was sitting around the fire pit in my back yard with my wife and a friend, sharing a drink and shooting the breeze. It was a perfect autumn evening: cool and clear, with no wind. A bright, full moon had emerged from behind the hills across the valley my yard overlooks, and was now perched in the center of the sky, casting moon shadows at various places in the yard. We had paused for a moment, and all you could hear was the hissing and crackling of the fire. I gazed at the moon and the picturesque scene, and thought: “I’m really going to miss this place.”

I need a new house, you see.

My condition is not the only reason I need to move, because I’m at the point in my life where scaling down makes sense. I never enjoyed yard work all that much, never liked house cleaning (who does?), and don’t take much pleasure in house maintenance, primarily because I’m not handy. A smaller house with a smaller, flatter yard would be cheaper to maintain, and require less work to take care of. The by-product of that would presumably be more free time for my wife and I to enjoy.

MS simply amplifies the need. Our house is too big for one person to maintain, and it’s frustrating for me to see my wife take on all of the inside house stuff knowing she could use my help. The cost of hiring people to mow a yard that is very hilly, remove snow from a driveway that is long, uphill and curvy, in addition to a portion of a private road we live on, is becoming prohibitive. Navigating the three stories (main floor, upstairs and basement) is becoming more cumbersome, and walking on terrain that has few flat spots has become a problem.

I’ve lived here the longest as an adult, so my connection to the place is deeper than any of my other homes, including my parent’s house. When I left home during my early twenties, I was ready to spread my wings and assert my independence. There wasn’t any melancholy or sadness, and when my parents passed away a couple of years ago, any emotional attachment I may have felt with the place was buried with them.

This is different. Quite frankly, we love our house. It is perched on a hill, has a wonderful view of a the Connecticut hills, and the interior decor and furnishings are just about perfect. So is the landscaping. It’s the house our son, who is now 19, was raised in. It took less than six months for us to move into the place once ground was broken, and we watched every step of the construction process, from the time the foundation was poured to the time we moved in. A lot of memories, good and bad, reside within those four walls, and it is going to feel very strange to call a new place home.

What is most daunting, though, is the thought of moving.

Back in the nineties, when I was twenty years younger, stronger, and had two good legs, we moved four times within a five year period. Two of those moves involved crossing state lines. The first move was a grand adventure, but the novelty had certainly worn off by move number four, into our current home. After that one, I swore that if I moved again soon, it would be in a pine box.

So I know what is involved, and understand that this move will be a royal bitch. First of all, we have far more stuff than we’ve ever had to move before, and we aren’t in our thirties anymore. Plus, I have a hard enough time helping decorate the Christmas Tree, so I have no illusions about what I will be bringing to the table when it comes to packing and moving a home. Maybe I’ll get an adrenaline rush and surprise myself, but that’s wishful thinking. The safer bet is that the process of moving is going to suck, and I will hate every second of it.

Having said that, the idea of a new place is exciting. We’ve built two houses already, and it is cool to see the planning and thought translate into the real thing during the construction process. Plus, when the new home is complete, you don’t have to worry about stuff breaking down, or having to replace anything in the near future. I relish the idea of having everything on one floor, ramps leading into the house from the sidewalks and garage, wide hallways that can accommodate a wheelchair, a bathroom/shower that will as well, and a stairway into the basement that has a stair lift.

As you can surmise, the new house will be ADA compliant, and knowing that we won’t have to worry anymore about my condition making it impossible to live in my home will put all of our minds at ease.  We want to incorporate everything we love about our current place, and, budget permitting, add a few things we don’t have but wish we did, like a sun room.

Do I have to move right away? Technically, no, but the progression clock is ticking. I would rather be in a place that will easily accommodate my needs should the day arrive when I’m wheelchair-bound, than have to look for a place because I have a hard time getting in and out of my home. Planning for a move now allows us to think clinically and rationally, and leads to better decision making. Waiting until it’s too late makes the process more emotional and impulsive.

My self imposed moving deadline is 2019. The biggest issue confronting us is finding a piece of property in our current town that checks all the boxes, and doesn’t cost an arm and a leg. That isn’t easy to come by in the section of town we desire, and contractors usually scoop the parcels of land up when they do. I’d rather not be beholden to any one contractor.

I’ve pegged our odds at finding the right place in our current town 50-50 at best. If that fails, the fallback position is to buy a house that is is disrepair but has good bones on the cheap, rip it down to the studs, and fix it up. The problem with that, however, is there aren’t a lot of ranches in our town, and this might actually cost more than building from scratch. So we search, wait, and hope something will emerge. As a last resort, we may have to expand our search to neighboring towns, but would first have to decide if that would be better than staying in town and settle for something less than perfect. Hopefully is doesn’t boil down to that.

They say patience is a virtue. We’ll see. Hopefully, a parcel will become available and we’ll be able to build the house we want. A nice view would be a bonus.

 

 

 

 

 

 

Sunshine and Rainbows

rainbow

I was taking inventory and skimming through the last few blog entries and almost depressed myself. “What a downer,” I thought, and was not pleased at the subliminal tone I felt I was portraying.  Not because what I’ve written isn’t true or honest, but because the mood of these entries struck me as sad, bleak and foreboding.

That was never my intent, you see. I want to convey my reality honestly, and not pull any punches in describing how hard and frustrating dealing with a disability can be. However, there is a yang to every ying, so I also wanted to convey that there has been a healthy portion of good that has been served with the MS. I saw that I may have strayed from that the last several weeks. My bad.

Now you may think, what good could possibly come with dealing with a condition that has turned out to be a lifetime sentence?  The answer is plenty, but you have to look for it because they are often little things, and they are often fleeting.

What has come through loud and clear in the ten years I’ve dealt with this, is that most people are good, kind and caring. That may be hard to believe given the events that have taken place across the globe and in our country, and the general mean-spirited vibe you get from watching and reading the news, or surveying our political landscape. I don’t deny that exists, but I believe it masks the true nature of the human spirit that I have personally experienced and witnessed through frequent acts of kindness and empathy.

These shine through in small gestures, like people opening doors when they seem me coming, or offering to help carry things if they see I’m struggling. We live in a very impatient world, where we get annoyed if our computers don’t boot up immediately, or if something we are streaming takes a few extra seconds. But people I’ve encountered don’t seem to mind waiting at the door for as long as a minute to open it for me when they see me limping their way, or offering an open seat on a crowded subway when it becomes available, even through they may have been standing longer than I have. And these are complete strangers.

Colleagues have taken it upon themselves a number of times to stand in long buffet lines to gather a plate of food and walk it to my desk without being asked (probably because they know I won’t) so I would haven’t to negotiate that distance or balance a tray of food in one hand and my cane in the other.

There are more examples I could provide, but you get the point. These small acts of random kindness, which occur almost daily, have renewed my faith in people and re-emphasized what I have always believed: despite our differences, people are generally good and kind in spirit.

The ironic thing is that, in all likelihood, this type of activity has always existed within my orbit, but I was too engrossed in something else to care. Now that I have to be aware of everyone and everything around me, it is as obvious as the nose on my face.

It’s a pity it took something like MS for me to appreciate it.

 

 

MS and Stress

alarm clock

Stress is a reality everyone endures in their lives and the triggers are numerous. Finances, kids, marriage, relationships, career, politics, love, hate, death and religion are a few that come to mind.

The issues that create stress in our lives are as unique as how MS affects us as individuals. What bothers you or causes pain in your life may bother me a little or not at all, and visa versa. Having said that, I think we can all agree that living with a chronic condition qualifies as a huge stress inducer. The ironic thing is that stress is one of the worst things possible for people with MS. But how can you avoid it?

Starting in 2005, I endured a two year period of intense and constant stress.  Up until then, I had been pretty good with managing stress and not letting it affect me, but what was unique about this siege was there were a handful of fronts I was battling simultaneously, and they were all hot button triggers for me. I could feel the stress consume my mind and body, but failed miserably in combatting it, or at least in taking better care of myself. Shortly after this battle ended, the symptoms appeared, never left, and I was diagnosed.

While I can’t prove clinically or otherwise that this caused my MS, I believe it to be true with all my heart. At minimum, it was a major contributor.

Once the symptoms impacted my daily life to a significant degree, I stopped stressing out about a lot of things. The fact that, unlike many people with MS, I don’t live in chronic pain, am not confined to a wheelchair, and am not struggling to make ends meet because my condition doesn’t permit me to work or perform well at my job, certainly helped. How can anyone not be frazzled by having to endure that? My symptoms are annoying, severely limit what I can do, and have forced me to change a lot in my life, but I don’t live with that kind of fear or torment. My reality gave me a very different perspective about life, and made a lot of things that used to bother me feel trivial and unimportant.

Don’t get me wrong, I’m not Mr. Cool, Calm and Collected. A few things remain that I get stressed over, stubborn remnants of my core personality. The one thing I know for sure is that when stress begins to pluck my nerves, my MS takes notice. Stress exacerbates my symptoms, and I can feel it happening. My leg feels flushed, as if what little strength remains is being drained. The limb dangles, flops, and sometimes feels like it doesn’t even exist. I feel like an amputee whose prosthesis is missing, and I have to get from point A to point B without anything for support. When this happens I find a place to sit, close my eyes, and try to focus on my breathing until I can feel by pulse subside and body relax. Normal feeling usually returns shortly thereafter.

Obviously, dealing with PPMS has added to my list of stress triggers, but not in the way you might think. I don’t stress over wondering about how I will feel a year, five years or ten years from now, if I will be confined to a wheelchair, if it will spread to other parts of my body, or if pain will begin to have an intimate relationship with me, because I honestly don’t think about that stuff. Not very often, anyway.

What bothers me is the wondering. What gets my mind going is when I feel something I haven’t experienced before, and wonder if this is the start of what will take me down one of those paths.

I don’t know a lot about RRMS because I never had to deal with it. What I know about that strain is from what the people who do have it tell me, or from what I read. And from what I gather, when a flare is underway, it is as subtle as a sledgehammer. There is no debate or question about what is going on. It is crystal clear and obvious.

My PPMS was never like that. My flares aren’t flares in the typical sense, but are often a subtle loss of function that becomes permanent. For me, it has been a slow and gradual process. The problem is, everyone has more aches and pains as they get older, or develop something that is more age-related than anything else. So if you get a twinge here, or something feels funny there, it’s hard not to wonder whether or not it is MS related.

When I’m on my feet a lot, walk a lot, or do some physical work outside, it isn’t uncommon for me to lose feeling in my toes, have my hip or back ache terribly, or have the leg feel like mush. If that feeling lasts longer than usual, my mind immediately wonders if this is the beginning of something bad. My rational mind is saying, “now Steve, this happens all the time. Take a chill pill and ride it out. You know how this song goes.” However, my emotional side doesn’t want to hear that. It wants to hop on the panic slide.

If you have read this blog, you know that I’m pretty good at compartmentalizing things, and so far I’ve done a good job at not taking the full ride on that panic slide. Maybe that’s because nothing catastrophic has occurred. I’ll lose a small piece of something, mourn it, say oh well, it could be worse, them move on.

Recently however, I can’t escape the nagging feeling that the progression has been moving a little faster than in the past, and worry that this might become a trend.

Last week, I described my travel adventure, and the one take-away from that trip is that, in all likelihood, I will avoid those kinds of meetings again. The facility was too big and spread out, the distance from my room to all of the meeting and gathering places was significant, and those excursions had to be made several times a day. I also had a much harder time negotiating big crowds. You see, it is really difficult to have a cane in one hand, a drink (or food) in another, and negotiate a sea of arms, legs and bodies belonging to people who are enjoying themselves and aren’t aware someone with terrible balance is nearby, and that bumping into him by accident could cause an embarrassing scene. Why should they? As a result, I stayed in my room more than I had in the past.

So, I’ve decided it might be better to connect with friends by going directly to their home towns, or having them visit me, instead of dealing with the obstacles last week presented. I can manage the airports. It’s the other stuff I can do without.

Here’s another example of why the progression train might be picking up steam. There are a few interior and exterior doors in our house that need repainting, and painting is one of the few things I can still do, and I enjoy doing it. But over the last few weeks, I’ve noticed painting isn’t as simple as it once was. Bending, squatting and twisting to get in a corner, or reaching up to get a high spot, take a lot more planning and effort. The task it is harder to complete, takes longer, and isn’t very enjoyable. That really sucks.

Have you ever woke up at night, not know what time it is, and heard the tick, tick, tick of your alarm clock? You can’t see what time it is, can’t remember if you set the alarm, and wonder when or if the alarm will ring. This describes the way MS causes me stress.

Do the episodes I’ve described mean this is finally it, that I’ve hit the downhill side of my MS curve? I hear the ticking, but I’ve been aware of the ticking the moment I started taking the hard-core meds. What drives me nuts is wondering if all this this means that the alarm to my personal Doomsday Clock is going to ring soon.

I certainly hope it doesn’t.

 

 

 

 

Traveling With MS as My Companion

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I love to travel.

While I have never traveled outside the US, I have visited most of our states, and most of our major cities. I enjoy getting away, seeing other parts of the country, and appreciating how vast and beautiful our land is. When I am on a plane, I love looking out of the window seat at the vast expanse passing underneath on a clear sunny day, or witnessing the spectacle of flying over a city at night, taking in the lit landscape like a young boy gazing at a glorious Christmas tree. As an experienced air traveler, I have learned a lot about what not to do in terms of booking, connection times, how long it might take to get through security, and things of that nature.

Over the last few years the amount of traveling I have done has reduced significantly, not because of my MS, but because the opportunities aren’t as great. The only accommodation I made because of the MS was to arrive at the airport earlier and to give myself more time between connections, because rushing though the airport to make the connecting flight is impossible. Aside from those two changes, my game plan when it came to negotiating the airport, and general attitude regarding air travel, had not changed, until today.

Subconsciously, I knew that when the symptoms slithered into my knee, it was a game changer. After all, I have documented that it is harder to walk, and that my balance is significantly worse in previous posts. I was curious how or if it would change my airport experience in the days leading up to this morning’s excursion from Connecticut to Nashville, Tennessee. In my self proclaimed state of denial and stubbornness to plow ahead and not worry about the consequences, I vowed not to change a thing regarding my airport game plan in advance of this trip. Then, my wife asked this question, although it was really more of a statement: “You’re getting wheelchair assistance this time, aren’t you?”

When I booked the flight months ago, I declined that option, perfectly content to muddle my way through security, and be the first on the plane. But she wouldn’t let it go, so I thought about it and decided, why not? But honestly, I only relented because of the two braces that span my toes to upper thigh, and the hassle they might present going through security. So screw it! If it makes getting through security easier, I could temporarily swallow my pride.

I am so glad I listened to her, for a number of different reasons.

The first thing you need to know about our airport, Bradley International, is that it is not huge. Early morning, which is when I arrived, is the worst time to be there because of all the business travelers getting out on the first flights of the day. And this morning’s crowd was no exception. In fact, it was probably the busiest I have seen it in years. Lots of people, and lots of long lines.

But when I entered the airport today, I knew something was different. Pulling the rolling suitcase behind me was infinitely harder because I had to zig zag through the mass of people, and with my balance, I don’t zig zag very well anymore. After I gingerly made my way to check my bags and drag them to the X-ray machine, I parked myself on a chair, and gratefully waited for the wheelchair attendant to arrive.

The first thing I noticed after I requested wheelchair assistance was that my boarding pass was marked TSA pre-checked, which allowed me to bypass those long lines. As we weaved our way through the throng, I was happy that I didn’t have to get caught up in that mosh pit of humanity.

Going through security was easier for a couple of reasons. The first was that even though they had to wand me, given my leg was encased in metal, I didn’t have to fret over my wallet, watch, and other items being left unattended, because my wheelchair escort grabbed them for me while the TSA agent was doing their thing. The other reason was that, in my opinion, the TSA rep was, well, nicer. He did his job quickly, and got me out of there faster than the previous times I went through the process without the wheelchair. Maybe it was my imagination, but I felt a lot of empathy.

I didn’t really need the chair to get to my gate after I was through security, but I have to admit it was nice not having to walk that distance. This was further illustrated when I got to O’Hare, and walked to my connecting gate. I wasn’t in a hurry, and I could have waited for the wheelchair to arrive, but I chose not to. The trek took a very long time and I felt something I never experienced in an airport before: vulnerability.

You see, people inside an airport are clueless. They wander around, either looking at their phones, looking for their gates, looking for something to eat, somewhere to sit, or rushing through the crowd like a running back picking a hole to run through, and they are all oblivious to who or what is in front of them, in back of them, or around them. That is not a good feeling for someone with balance issues, so I simply steered to one side of the terminal and stopped or slowed down when someone threatened to invade my orbit, using my cane to secure my space if necessary. It felt like walking through a mine field.

Fortunately, the agent at my connecting gate told me a wheelchair would be waiting for me in Nashville, so I knew I wouldn’t be tempted to hoof it on my own when I arrived. It was a good thing too because while there were nowhere near as many people as there was at O’Hare, the walk was just as long, had more inclines, and the floor was carpeted, which tends to grab my foot more.

By the way, is it me or does it seem that the airport wheelchair attendants tend to be older, or smaller of stature? While I am average concerning height and weight, I am certainly not a lightweight, and felt bad for the two that got me because they had to strain a few times to get me where I needed to do.

Another thing that was different is that getting in and out from the window seat for a bathroom break during the flight was much harder, having to grab and hold onto the head rests on the seats in front of me to stay upright. Maybe I am going to have to get aisle seats from now on. And once I got to the aisle, the journey to the bathroom felt a lot more wobbly than it ever used to, and the aisle felt narrower. My hands were always on the seats on each side of the aisle because if we hit unexpected turbulence, I know I would have fallen across someone’s lap. I never felt that way before.

Getting on and off the bus that served as the shuttle to my hotel was harder, and as we approached the Opryland Resort, the bus driver described it as 57 acres under one roof and instead of thinking that was really cool, it seemed like another obstacle to contend with.

The fact is, it has been a year since my last trip, and everything is harder. When I was at the same meeting in Vegas last year, everything was just as spread out as it is here, and there was as much if not more walking inside the facility. But the difference between this year and last, is that last year I viewed that reality with a “no problem” attitude. This year’s attitude is more like “oh shit!”

I will never get on an escalator again with luggage in tow because I have one hand on the cane, another of the luggage handle and, unfortunately, no third hand to grab onto the escalator rail. Not a smart move for someone with balance issues. Nothing bad happened, but I would be lying if I said I wasn’t nervous. Why I didn’t look for an elevator is beyond me. That won’t happen again.

Now that I am here, I am sure I will enjoy my time in Nashville, but I know there be a lot of walking and standing, and I suspect that will take more effort than it used to. Then I will have to endure the return trip home. When I reflect on this trip once I am home, I doubt it will squelch my desire to travel again, but perhaps I will have to be more selective regarding where I travel to, or when my flight departs.

The one thing that I do know is that MS has definitely invaded the ease in which I used to travel, and that with time this will become harder. Perhaps a point in time it will come where traveling will become impossible.

And that would be a very sad day.