The New Normal

Normal

2019 will mark the eleventh year I have been living with MS. After it rudely introduced itself,  first on a treadmill and then a few weeks later when I was outside mowing the lawn, the symptoms weren’t that cumbersome. It took a couple of years before it permanently changed the way I walked, and the progression has been slow but steady ever since.

Some years have been worse than others on the progression front, but the result has been the same: my physical abilities are worse on December 31st than they were on January 1st.  That isn’t unusual given the nature of my beast, but as I was cruising with the blimp the other night watching a video that chronicled the Red Sox magical 2018 season, a thought occurred to me that in retrospect was both surprising and sad.

I honestly can’t remember what it feels like not to have MS.

That doesn’t mean I don’t I remember the life I once had, the one with no physical restrictions. After all, I still have the pictures and video. That was a life where I didn’t think twice about undertaking any chore,  where I could to stay outdoors in the summer heat as long as I wanted, and where I could play eighteen holes of golf on any kind of course. Those days seem so carefree and foreign now.

So yes, I remember the events. What is forgotten, however, is what it actually felt like to walk unimpededly, without thinking about every step I take. I don’t remember what it felt like wondering if every change in my body is an indication of additional slippage into the rabbit hole of progressive MS. I don’t remember what it felt like to run, go on long walks, to ride a bike, to frolic on the beach, to take the stairs without measuring each step, or not having to worry about falling in public. I don’t remember what it was like not having to worry about where the nearest bathroom is for fear of peeing myself, or not requiring a urinal within arms reach every time I am in my car.

My new normal has eclipsed everything about my old self. The mindset where everything is assumed and taken for granted is dead. I don’t remember anything about what is was like to be whole and able bodied. I don’t remember what it was like not having to go to a hospital every month to have my blood filtered and replaced, or having toxins infused in the hope that my body will stop cannibalizing itself.

I don’t think I’m unique in that regard, but I consider this disability as the death of my former self. That might be hyperbole because I obviously still reside in the land of the living. I have the same emotions, many of the old concerns, and continue to plod forward and rebel against my reality any way I can. In some ways I am better off mentally because I no longer take anything for granted, appreciate the little things more, and therefore have a better perspective on life. But it is not an exaggeration to say that I am a fundamentally different person than I was eleven years ago, and that this version of me could feel like Nirvana compared to what my status might be another eleven years from now.

This is the part of living with a chronic illness/disability that nobody talks about or explains to you. When you learn about your new reality, it’s understood at a certain level that your life will change. If you accept and adapt to that change like I did, you adjust to a failing body with as much grace and stubbornness as can be mustered. You don’t give up or give in, but in that process you also don’t realize that your previous life will be relegated to the dustbin of your memory until the day comes, like it did for me earlier this week, when you realize you can’t remember what it felt like to be the person you once were.

An argument can be made that this is a part of the aging process, but I’m not willing to concede that because I’m not even sixty yet. I’m no spring chicken, but I’m not an old geezer either. This is not the mournful lament of a man in his seventies who is acknowledging the effects of an aging body for the first time. My epiphany was the product of this neurological condition that has consumed my life over the last decade, and it caught me completely off guard.

The fact that I can’t remember any of the stuff I mentioned burst my denial bubble, at least temporarily. Not being able to remember what it felt like to have two good legs is like not being able to remember what it felt like to fall in love the first time, to lose your virginity, or to hold your infant child for the first time.

I’ll get over it, because what’s the point of crying over spilled milk? But it really does suck.

 

Measuring Stick

ruler

Winter has arrived early in New England this year. Last Thursday, six weeks before the official start of the winter season, about six inches of snow fell during rush hour, paralyzing traffic and generally raising hell with our psyches. This was followed by a period of cold rain, which left a slushy mess the following morning, and a period of much colder than normal temps that were made worse by a constant breeze. More measurable precipitation is in the forecast during the next twenty four hours, and Thanksgiving temps are supposed to be what one would expect in January. Swell.

I mention this not because I hate winter, as you have probably figured out from all the posts I wrote  last year. Nor am I writing about it because this has my nerves on edge because of its potential to raise some serious hell with our building timetable, which I will discuss in a future post.

No, the reason for pointing this out is because of what I have learned from our premature winter experience.

I don’t think my MS progresses in a typical way. Although get I flares from time to time, where something is noticeably different that does not go away, these are rare occurrences. I can count the number of times these have happened over the last eleven years on one hand. The best way to describe the nature of my progression is to use the following anlogy.

Imagine a river that runs through an unpopulated, densely wooded area that you can reach via a hiking trail. At the end of the trail, which is a scenic area, you look down about thirty feet and see the river carving it’s way through a rocky terrain. If you visit this place frequently, the sight that greets you down below doesn’t appear to change. But if you make the trip once every one or two years, you notice the erosion that the water caused since your last visit. The river is noticeably wider, and covers more terrain than you remember seeing the last time you were there.

My progression is like that. It isn’t noticeable from day to day, but every year one event takes place that clearly illustrates a progression I was not aware of, and last week’s snowfall was one such event.

Even though last week’s temperatures were the coldest of the year, they were in the low to mid forties during the day, which meant there was a lot of snow melt. While this stuff didn’t completely freeze until the sun went down, the driveways and sidewalks remained slick in isolated areas during the day. I’m always aware of the surface conditions during the winter because the last thing I want to happen is falling hard and braking something in the process, and last week was no different. I was very careful and methodical when I ventured outside, but even so, it became obvious that there was a big difference negotiating this terrain compared to the last time it snowed in March.

Moving on the slick and almost frozen surfaces was noticeably more difficult and treacherous. The most pronounced difference was my balance. More specifically, the lack of it. I could feel myself tottering from side to side, the leg always on the verge of sliding out from under me, even with a cane in hand. What I couldn’t determine is if the worsening balance was the result of less strength in the leg, or if the leg felt weaker because my balance sucked so bad.

All summer I thought I had achieved a lengthy period of status quo, and that if any progression had occurred it was minimal at worst. After all,  I hadn’t curtailed my activities, and hadn’t come close to falling even once.  I felt like I might be a little sturdier on my feet, and entertained the notion that perhaps my symptoms had actually improved, which would have been a first.

If last week didn’t hammer the point that the progression continues to stealthily advance, the shingles vaccine certainly did.

During my annual physical last summer, my primary care physician suggested I get the vaccine, explaining that while shingles is something nobody would want to have, it would be exponentially worse for someone with MS, so I consented get the shots.

The vaccine is administered twice over a three month period, and about half of the people who get it, according to Dr. Google, experience flu-like symptoms. After the first dose, I felt punky the following day but could still function at work. I received the second dose on Monday, and yesterday it kicked my ass. I literally felt like I had the flu: exhausted, body aches, fever. You name it, I felt it.

The last time I actually had the flu was years ago. I remember having a harder time getting around, bending the leg, and things of that nature, but on a scale of one to ten, with ten being the worse, I would rate the impact on my symptoms at a three or four. This week the impact was more like a seven or eight. I don’t know if it was simply the stuff in the vaccine that made things feel worse or if it was the progression of the MS, but it was infinitely more difficult to bend the leg, support my weight, and generally stay upright or move.

So it turns out I was naïve in thinking that I was actually improving. I’m not complaining, mind you, because in the scheme of things I am still doing well. But these moments can’t help but make one wonder if and when the hammer will come down at some point and take away all my mobility in one massive blow.

This possibility has always been there, but I have kept that thought locked away in the far recesses of my mind. These measuring stick moments, however, make me wonder if that doomsday scenario it close at hand,  or if this will continue to be a slow bleed.

These next few months should bring more clarity to that question, as the house gets built and we put some sweat equity into the place to save some money. That experience will either kill me or cure me, so stay tuned.

Meanwhile, I wish you all a Happy Thanksgiving.

 

Heat

summer

The summers of my youth were idyllic. I remember family vacations at cottages on the Connecticut shore, where a Good Humor truck was always parked near the boardwalk. Days would be spent frolicking in the water, crabbing, and riding bikes. Twice a week, we’d grab blankets, pillows and snacks shortly before sundown, and trek to the beach to watch a movie. The night air was warm, the sound of the waves gently lapping on the shore was always present, and the sand was filled with chairs and blankets as kids and families gathered to see what was typically a Disney movie. This was Heaven for a ten year old boy.

Days at home during the summer was spent riding bikes all over town, visiting a friend’s house to go swimming in their pool, or playing baseball all day long at one of the large grassy fields near my house. When it wasn’t raining, the only time I was in a house was to have breakfast, lunch, dinner and to sleep.

Summer was, and always has been, my favorite time of the year. The onset of summer vacation from school was wildly anticipated and celebrated, even for those of us who liked school and were good students. Summer days seemed to last forever when I was a kid, and while the new school year always arrived faster than expected, the break felt like a long period of time.

My enthusiasm for the season didn’t diminish when I became a teenager, and had to obtain a summer job. All that meant is I had less time to have fun, but fun was still to be had, and I pursued it with the passion of a religious zealot.

What is there not to like about summer?  It’s much more enjoyable to throw on a t-shirt, shorts and sandals than to bundle up in layers, struggle with a pair of boots, and find places to stash winter gloves or a hat. There are no limits to what you can do in whatever free time you have compared to the cold winter months, when darkness prevails, you’re in hibernation mode, live in sweats, and spend most of any free time you have in front of the boob tube.

Even summer chores are more pleasant. What would you rather do, mow the lawn, tend the garden, and maintain the pool, or scrape ice and shovel/plow snow?

Another thing I loved about summer was the heat. You see, I would always rather sweat than freeze, and there is something about sweating in the summer heat that appeals to the prehistoric recesses in my brain. When I lived in Southern Indiana for several years, the summers were brutally hot and humid. From Memorial to Labor Day, a typical day would involve temps in the 80’s and 90’s with extremely high humidity. I never lived in a place where it would be hotter and more uncomfortable at six in the afternoon than it was at two or three. Being land-locked, the heat would just build and increase throughout the day, which is one of the reasons they had such horrific storms. You could literally walk outside and start sweating so badly you felt as if you were melting.

But I didn’t mind it one bit.

New Englanders can wax poetic about the beauty of our autumns, and feel invigorated by spring, where everything quickly explodes into a lush green after the long winter months, but I will take summers any day of the week.

It is too bad summers don’t like me that much anymore.

I say this as we approach a stretch where we will have a week of 90 to 100 degree weather and high humidity. Once a cause for celebration it instead is a reason for caution because, unfortunately, heat and MS don’t co-exist very well.

Pretend for a minute that your body runs on a battery, which gives you the energy to work, play, move, think, concentrate, or do virtually anything. Food and rest help recharge it on a daily basis, which in turn allows you to function from day to day.

For some reason, heat drains my battery to virtually nothing the longer I’m exposed to it, and I’m not unique. Many, if not most, MS Warriors have this issue. I believe an increase in body temperature is the cause for this power drain, but I don’t know if that is the true clinical reason.

The drain occurs more quickly if I’m active while it is hot, but it has gotten to the point where I can feel a difference by simply sitting outside for an extended period of time. When humidity gets added, the effect is exponentially worse.

Imagine your body feeling completely limp, like every bone is missing. Imagine feeling so weary that the idea of getting out of your chair feels overwhelming. Imagine your  head feels like it weighs one hundred pounds. Imagine your mind feeling like a vast wasteland of emptiness, where the act of thinking feels like a herculean task. Hell, even the idea of sleeping seems like a herculean task. Your focus becomes a narrow pinpoint that centers on the thought that you can’t believe how shitty and utterly spent you feel.

I’m describing a worst-case scenario, but I’ve been there on an occasion or two. Most of the time the feeling is one of significant physical and mental fatigue, and the mental aspect is far worse than the physical.

Some warriors use cooling vests to regulate their body temps during the hot summer months. If I still lived in Southern Indiana I’d probably own several and wear them constantly in order to survive their summers, but they aren’t necessary in my neck of the woods.

My respite from the heat is a pool, which includes a deck and large umbrella that provides a lot of shade. The umbrella cures a lot of sins in terms of the heat from the sun, but nothing can escape the humidity. Nonetheless, immersing myself in the pool provides relief from the heat, and cools my body temperature immediately. It isn’t a perfect solution, because prolonged exposure to the hot sun can still make me feel like the battery is at fifty percent or less, even when I’m in the pool. But it certainly makes life more tolerable, and who doesn’t love the feel of being submerged in comfortable, crystal-clear water on a hot summer day. It brings out the kid in all of us. I especially love to float in a raft where my butt and feet are in the water, my upper body and head is resting comfortably in a semi-upright position, and a cool beverage is secure in the cup container within arm’s reach. It doesn’t get any better than that!

Every winter and summer provides a platform to gauge the pace of my progression. The struggles of maintaining a clear driveway this past winter told me there was a definite progression compared to the previous year. Now, this next week will test the theory from the heat and humidity perspective. How much of a difference will I notice compared to last summer?

When I left the house to drive to work this morning, it already felt like a sauna outside, and the sun hadn’t even risen yet. I know it’s going to feel like an oven for the foreseeable future, but I have stuff to do. So it will be interesting to find out if I feel like a rag doll when the evening rolls around.

I hope not. I don’t mind bitching about the winter, because the winter deserved to be bitched about, but I hate the thought of being a prisoner in my own house during my favorite time of the year. I can live with watching people enjoy themselves from the sidelines. Watching it from the inside is a completely different story.

 

 

 

The Silent Thief

Thief

Mute and nameless

The flare arrives

A ghost in the night

With evil intent

 

With stealth and malice

It silently leeches

Vitality and spirit

From the unsuspecting host

 

A sadistic specter

It delicately noshes

Never a glutton

Leaving room for more

 

Arrogant and smug

It leaves a calling card

Taunting the victim

Before slithering away

 

Unpredictable and unnerving

Its appetite is ravenous

Its return is ordained

To nibble once again

 

Leaving its target

Less whole than before

And filled with dread

At the inevitable outcome

The P Word

rose

There is a word that anyone who suffers from MS dreads to hear, and that word is  progression.

The primary definition of progression is “the process of developing or moving gradually towards a more advanced state.” Normally that’s a good thing, but not in our case, because if something is progressing in the MS world, it means our bodies are breaking down, and we’re basically screwed.

I’m not familiar with the relapsing-remitting world because I never lived in it. Mine was progressive right from the start, although I didn’t realize it after the initial treadmill incident. It took a period of time and one particularly shocking episode to realize that what I had was not only here to stay, but was permanently entrenched and getting worse.

Over time, I began to define progression in my own terms, and discovered that while doing whatever I could to stop the progression was a noble quest, the best I could do in reality was retard the speed in which the disease advanced. I also learned by reading what I could about MS, including the personal experiences shared on various blogs and message boards, that like the disease itself, progression is different for everyone.

In my case, it has stayed in one place. In the beginning, my progression moved at a snail’s pace, slow but consistent. The best way I can describe the way it moved within my leg is to compare it to the old mercury thermometers, like this one.

thermometer-temperature-fever-flu

For those of you who aren’t familiar with these, the mercury inside the glass enclosure rises with your temperature. Using that analogy, the mercury started in my foot and slowly moved north, as the disease doggedly consumed my right leg. Once it got to my calf, the pace of my progression changed.

From that point on, when the mercury moved north, it occurred in quick, sudden bursts. I would literally go months where I thought the progression had finally stopped when, out of the blue, it jolted upwards, moving from mid-calf to just below the knee. Thus began the period where I had these immediate and noticeable changes. The odd thing is, the progression would wobble. The weakness would move north and make things worse for a few days/weeks, then move back down, improving to where it was before the sudden change. Like a yo-yo, this would occur over a period of time before the progression finally settled on the new high level mark when it first appeared. It has progressed in this manner ever since, the most recent episode occurring several months ago when it moved to just above my knee, forever complicating my ability to walk, and every other activity that requires the use of my legs.

Is this true progression? I certainly think so, but I think my neurologist sees things a little differently. While it has progressed within the limb, which isn’t trivial, it remains confined to that limb and has not spread elsewhere. His main concern, besides doing what we can so I don’t lose complete use of the leg, is to prevent the progression from branching to my arms and hands, which would signify a significant and troublesome change. He’s told me on more than one occasion that is one of his priorities, and has actually gone as far to predict what limb would be affected next.

The yo-yo type characteristic of the way my symptoms have progressed keeps me guessing. For instance, I’m so in-tune with my body now that if I feel the slightest change, I’ll wonder if it has something to do with the MS, and if this is the start of something bad.

Here’s a perfect example. I’m a good typist. I can lay down a lot of words from the keyboard in a very short period of time, and have always had exceptional accuracy. Over the last six months however, my accuracy has gone to hell. Is there a reason for that? Does it have anything to do with the MS? Is this the beginning of it invading my hands, or am I just becoming sloppy?

This line of thinking occurs every single time there seems to be a new development. I wonder if I might be making something out of nothing, and if I dismiss whatever it is as inconsequential, I’ll invariably being thinking if that is a smart thing to do. I never call the neurologist in these situations because I don’t want to appear neurotic.

Sometimes I wish that if I’m going to realize my worst fears about living in a world of pain beyond my comprehension, becoming wheelchair bound, and completely dependent upon others, that it happen suddenly and savagely so there is no doubt. It’s the doubt and second-guessing that drives me nuts, you see. It doesn’t take long however for me to realize I am a lot better off than most (at least I think I am), and that I’m being an idiot because wishing for that to occur is insane. This realization always settles the nerves, which allows me to start compartmentalizing again, and resume my merry voyage on the SS Denial.

Hopefully it will be a long trip. It’s lasted almost eleven years so far.