Category: PPMS

A Cold Shower

Shower

Before I get started, A BIG THANK YOU to Tom, of Tom Being Tom fame, for being a guest author last week. Your contributions were well received and much appreciated Tom. A handful of other bloggers, and some published authors, whose writing I enjoy and admire have also graciously agreed to contribute to this blog when the mood strikes them. I’m looking forward to reading what they have to say with great anticipation.

We now return you to the regularly scheduled program………….

When I was first diagnosed, I received a lot of advice from various outlets, the primary one being that I should seek the help of an “expert” in the MS field. I wasn’t keen on that idea at first, but eventually warmed up to it. After all, there is nothing wrong with a second opinion, and I became increasingly curious about what they might have to say or recommend.

Johns-Hopkins emerged as the preeminent facility closest to home. Making an appointment was easy, and I wasn’t choosy about who I saw because I assumed they were all good.  Once the date and time was set, I signed the necessary releases so they could obtain my MRI results and medical records, then booked a round-trip flight to Baltimore and a room at the Inner Harbor Marriot. When I subsequently mentioned the trip to a good friend, he decided to drive from his home in Pennsylvania and hang out with me for the weekend. This made the upcoming journey seem like a fun thing to look forward to, rather than a solitary business venture.

We met in the hotel lobby shortly before noon that Friday morning, discussed our plans for the weekend, and he asked if I wanted him to join me for my 1:15 pm appointment. I had never considered it, but thought it might be a good idea. Having another set of eyes and ears would help insure I didn’t miss anything the doctor had to say. This turned out to be a wise decision, but for different reasons.

Both of us had worked in the healthcare arena our entire careers and were not intimidated or awed by hospitals or clinicians. Nonetheless, I was apprehensive about the appointment and what I might learn, good or bad, from it. After all, this was Johns-Hopkins, and they knew their shit. It felt like I was going to court to be sentenced by the judge.

Once we arrived, the registration process didn’t take long and we were ushered to the clinic, then escorted to a treatment room. A few minutes later the physician arrived, and introductions were made.

I started rattling off things about myself, my clinical history, and why I chose to come to Hopkins. Then I started asking a bunch of questions about treatment, prognosis, and things of that nature. Looking back on it, I’m sure it was obvious that I had made a pilgrimage to what I thought was the MS mecca of the eastern seaboard.

It turned out to be more like Dorthy meeting the Wizard of Oz, because when I had finished talking, he gazed at me with a look that was a combination of indifference and boredom. The first words he said were:

“When has medicine cured anything?”

Talk about a buzzkill.

At first I wasn’t sure I heard him correctly, then scrambled to try to hide what I’m sure was the crestfallen look on my face. For the next fifteen minutes, he asked a few questions and provided information regarding what I might consider doing in terms of treatment, diet, and things of that nature, but that is all a blur to me now. I had tuned him out, and picked up the pieces of what I didn’t hear from my friend later on.

I was dumbfounded. After all, what this guy just said, or so I thought, was “why did you come all the way down here, you idiot. You’re fucked, don’t you know that?  If you’re looking for encouragement you came to the wrong place.” Whether that was fair or not, I could not believe I came all the way from Connecticut to what I presumed was one of the premier MS institutions in the country to be treated like this. I wasn’t looking for a cure because I knew none existed. What I was looking for was information, validation, encouragement and, most importantly, a reason for hope. Instead, I received an ice cold shower.

My friend and I left the treatment room in silence, headed to the main hospital lobby, and sat in one of the sofas. I turned to him and asked “did that really happen?” He smirked and replied, “I was about to ask you the same thing. I can’t believe he actually said that.”

The remainder of the weekend was spent exploring the Inner Harbor, taking in an Orioles game at Camden Yards, and enjoying the fine cuisine the city had to offer. We cracked jokes over dinner and drinks about the healthcare business in general and that physician in particular, so the trip was not an entire waste.

I’m not sharing this story to declare this physician did me a favor, and how grateful I am for it. At the time I was incredulous, confused, and rip-snorting pissed. His general demeanor and attitude irritated me the most. Besides, I didn’t totally agree with what he said, but didn’t want to debate the point. I may be splitting hairs here, but didn’t medicine solve polio and several other scourges?

The reason for sharing this story is to tell you about the two invaluable lessons I learned from this experience which have guided me throughout my MS journey, and apply to anyone suffering from a chronic condition.

Lesson one is to be your advocate and decision maker regarding your health and treatment. Don’t search for the Holy Grail because it does not exist. Finding a  knowledgeable clinician you connect with is paramount, and you can find one nearby if you look hard enough.

Lesson two is to learn as much as you can about what is ailing you, and don’t automatically defer to your clinician just because of who they are. Ask a ton of questions, don’t worry about whether they may be “stupid”, and if something doesn’t feel right, don’t do it.

I didn’t practice either of these until after the Hopkins experience. Otherwise I never would have agreed to self-inject with both Betaseron, and then Copaxone. I had primary-progressive MS, and knew these drugs were not clinically effective for it, yet I agreed to take them because that was what my neurologist suggested. Needless to say, they didn’t do a thing for me other than cause occasional pain from the injection, bruising and welts.

I also would not have agreed to having a spinal tap in the neurologist’s office. I knew they were generally performed at a hospital, and thought I might be more comfortable and relaxed in that setting, yet agreed to the office because that’s what he wanted and I trusted him. It turned out to be a bad idea, and I wound up going to the hospital anyway after four unsuccessful attempts at drawing fluid. I changed neurologists shortly thereafter.

The Hopkins gambit opened my eyes to what I was doing wrong and helped transform me from being a docile mouse who agreed to anything my doctor said, to someone who took ownership of an uncertain future.  I found a new neurologist, and have been with him for the last eight years. He is on top of all the research, and has a wealth of information concerning what has and hasn’t worked for the thousands of patients he has treated over the years. He shares the pros and cons of any recommendation he might suggest based on this knowledge provided I ask the questions, which allows me to chart my own course.

To this day I don’t understand why that doctor at Johns-Hopkins said what he said or acted the way he did, and often wondered if he treated all first-time patients the same way. Out of curiosity, I checked to see if he still worked there before I started writing this entry, and wasn’t surprised to learn that he did not. He’s on the faculty at the National Institute of Neurological Disorders and Stroke in Bethesda, MD.

A research and academic environment like the NINDS sounds like a perfect place for this guy. After all, his bedside manner left a lot to be desired.

 

 

 

 

The Final Straw?

IMG_0179-2

Blizzard Brody visited our state back in December, but in hindsight it was a Blizzard in name only.  Yes it snowed, but the snowfall was not intense. Yes it was windy, but no power was lost and no trees were damaged. We’ve had some cold snaps since that storm, and a few snow events, but nothing cringe-worthy. Other than the fact that we’re into March and everyone is sick of winter, it’s been a pretty tame one.

Two days ago the talking heads started hyping winter storm Edna, and people overreacted as usual. Gas stations had lines going into them, and grocery stores were being wiped clean. You see, this storm was allegedly going to dump a bunch of wet, heavy snow on the region and pack winds that could cause damage. Heart attack snow, as the guy who does most of my driveway calls it.

Accumulation predictions had grown, which got my attention, but that was mostly for the Northwest Hills. Nonetheless, I decided to work from home yesterday. After all, even though we could get 6 to 12 inches when it was over, who wants to commute in that shit? According to the forecast, the snow would start around seven in the morning, intensify by ten, and conclude by ten in the evening.  When seven in the morning rolled around, it was cloudy and dry. By ten, there was a light rain falling.

The southeastern part of the state was supposed to get most of the rain and not a lot of snow. Maybe 3-4 inches. So when it started raining, I figured the storm’s track had moved. When I finished my work later in the afternoon, it was still drizzling. A few fat flakes would occasionally mix in, but nothing was coating the roads or ground.

I breathed a sigh of relief because my son, who I will refer to as Shodan, had a heavy cold and K was battling a nasty sinus infection. I was two days removed from a stomach virus myself, so I was more than happy that the weathermen screwed up yet another forecast and I wouldn’t have to worry about snow removal that night.

IMG_0180

Less than an hour later there were white-out conditions, and it remained that way for another seven hours. Knowing this stuff was going to be saturated with water and heavy as hell, I decided to remove the snow in stages because the last thing I wanted was to remove maybe a foot of wet heavy snow all at once. My not so big blower wouldn’t be able to handle that, which meant a lot of shovel work would be required, which was simply not going to happen.

Little did I know, Edna, which was not a blizzard, would put Brody to shame. Eighteen inches of snow fell over a six or seven hour period, so you do the math regarding how heavy it was coming down. The pictures you see here don’t do the storm justice because about a third of the snow had melted by the time I took them.

The first time I went out with the blower (Shodan had already taken a shower and was down for the count) four inches had already accumulated, and it took two hours to remove it from the section of the driveway the plow guy can’t reach, in addition to the front and back sidewalks.

After I came in and collapsed on the recliner for rest in front of the telly, I reluctantly ventured out back for the next go around and there was an additional eight inches on the ground. It was at that point I knew this storm was trouble. The wind was howling, the snow was coming down sideways, and at one point, a clap of thunder erupted and a flash of lightning whited everything out, scaring the hell out of me in the process.

When I was out there, my ankle was constantly bending, and it almost got to the point where I was walking on the side of the ankle instead of the bottom of my foot. The entire leg was so weak I could barely move it, and my good leg was screaming because it had to compensate for the compromised one. The back and hamstrings weren’t pleased either.

At one point, the bolt assembly that holds blower handle was loose, which I didn’t know, and became dislodged. Half the handle was in my hand, and I could not control the blower, which was slowly rolling down a small decline, and I had to hurry to keep pace with it before it came to rest in a snow bank. How I remained upright is beyond me. I was not happy, said every bad word I know, and made up a few in the process, for a solid minute.

The immediate issue was to find the bolt and screw because if I didn’t, they would get buried in the snow and perhaps lost forever, rendering the blower useless. So I got on my hands and knees, which was a chore, strained my eyes and blindly ran my gloved hands across the driveway surface in a raging snowstorm, hoping to see or find something that looked or felt like a long bolt and large hand screw. Fortunately, this happened quickly. Now that the “easy” part was over, I had to get back on my feet.

The first two attempts failed, so I literally crawled on my hands and knees to a car that was parked nearby, pull myself up, reassembled the handle, and get back to work. Round two took almost three hours and I didn’t even attempt the sidewalks.

When I was done, it was still snowing, and my leg wouldn’t move at all. I literally dragged it behind me until I got inside, laboriously removed the boots, knee brace, the AFO brace, which actually turned out to be a detriment, then peeled off a saturated coat, hat, gloves, scarf, snow pants, sweats and undergarments in a heap onto towel laid on the floor. I trudged up those long stairs, took a shower, gingerly headed back downstairs to the kitchen and poured myself a whiskey (no ice). It was close to 11pm, and sipped my drink in the quiet stillness.

Thoughts were swirling in my head: I can’t do this anymore, I don’t want to do this anymore, I can’t physically do this anymore, and I am so tired of dealing with this.

As stubborn as I am, and as much as I try not to give into this disability, I’m not stupid, and some things can’t be ignored. Storm Edna was a cold slap in the face in that regard. Twenty minutes later I fell into bed, my body ached from head to toe, and quickly fell asleep.

To add insult to injury, we lost power early this morning. My birthday morning. Not that I was surprised. The snow had coated all the tree limbs like a coating of white wax. It was a pretty spectacular sight actually, but all the limbs were bending terribly and you knew some would eventually snap. And snap they did. Over 40% of our town lost power, but ours fortunately came back on about a half hour ago. At least I’ll be warm tonight, be able to enjoy a hot meal and take a comfortable shower.

Still, the sidewalks and the snow that fell after I came in for the night had to be removed. It was a piece of cake by comparison, but I ache all over,

So now this whole moving thing becomes serious, not that is wasn’t before, because I don’t want to go through this again next winter. The need is more urgent with no solution in sight.  Maybe we’ll have to reassess out priorities. The easiest and most practical thing to do is move into one of those over 55 communities where all the outside stuff is taken care of, but I hate that idea. Plus they aren’t cheap and I would still have to make the interior ADA compliant.

There isn’t any land available in the section of town we want that has city water, so does that mean we need to look at neighboring towns? Don’t really like that option either. But something might have to give because that clicking clock has suddenly become very loud.

Meanwhile, I will enjoy the rest of my birthday and pray like hell that the next coastal storm/nor’easter that is forecast for Monday is a total rain event. I can’t take another yesterday.

 

 

 

 

 

Think Getting Published is Easy?

publishing

I’ve written a novel. The main character has MS (big surprise), but that’s only a subplot to the story, which is about self-discovery, perseverance, family, friendship, love and redemption.

I never intended to be an author, and how I came to write this is a long story in itself, but I enjoyed the process, had the assistance of an editor along the way, and I think the end product is pretty good. Most of the people who have read it certainly think so. Who knows? Maybe this can become a second career if working regular hours in an office  becomes impossible. A guy can dream, can’t he?

But I have to get one little detail out of the way, which is getting the damn thing published, and I don’t mean self-publishing. When I finally got the manuscript finished after so many edits and revisions I lost count (at least twenty of them), I figured the hard part was over. Little did I know.

I assumed all that needed to be done was to send the manuscript out to hundreds of publishers, who would see how brilliantly I write, and fall all over themselves trying to sign me. My literary agent, who has been in the business forever and whom I trust, quickly disabused me of that idea. In today’s competitive environment, you need more than talent. You need a social media presence.

Oh shit!

Just hearing the term “social media” makes me cringe, primarily because I never believed in it, didn’t have time for it, and didn’t want to be bothered with it. E-mail and texting was more than enough for me. Unfortunately, social media numbers are necessary because the assumption is you have a built-in network to market the book to. So whether I liked it or not, I had to jump on the bandwagon. And until a few days ago, I thought I did.

The laundry list of things I needed to accomplish when this odious chore was first presented made my sphincter pucker. I needed to max out the number of friends allowed on Facebook, which is 5,000. At the time I had less than 100. This took me the better part of three months to accomplish.

But that wasn’t enough. More was required, the list of options long, and starting a blog was the least objectionable of the choices. That, dear followers, is how this blog got started. Not that I have any regrets. I enjoy doing this and have met some fun and interesting people along the way.

I also needed at least five endorsements from published authors, which took as long as it did to achieve 5,000 friends.

Those three accomplishments got me to the point where I could sit down with my agent and hopefully move forward on the publishing front. That meeting occurred on Wednesday, and the good news is that we are going to actually start the process. YAY! 

The not so good news is getting started means I also have to create a web site (ka-ching!), and get my Linkedin presence more robust than Facebook. By the way, Linkedin does not have a follower limit, so I presume I’m looking at having to get in the 10,000 range. I currently have 103. And while all that is going on, I need to get started with Instagram.

In addition to this, a marketing plan that can be sent to publishers along with the manuscript needs to be developed, which demonstrates how wonderfully connected I am, shows all the writing groups I am affiliated with, and lists more endorsements than I currently have. That presumably will occur once the web-site, Linkedin and Instagram are in full gear, along with Facebook. Getting the blog numbers up would also be helpful.

I walked out of that meeting with mixed feelings. I was happy that we are going to actually move forward with this, but all the other stuff? It’s completely foreign to me. I think I will become enthusiastic and have fun once I get into it, but right now it feels like I’m sitting in the dentist’s office waiting for a root canal.

I know my agent is right, because once it does (hopefully) get published, the foundation to market, sell and get the word out will be in place, and the news hopefully spreads like a virus.

Still, all of this for a freaking book? If I’m going to go invest all this time, money and aggravation to get the platform up and going, it sure as hell means I’m going to have to write more stories. Otherwise, what’s the point?

Wish me luck.

 

Does It Matter What People Think?

outside world

I wasn’t self-conscious about my “disability” or even thought of myself as having one after I was initially diagnosed. Back then, I moved around pretty easily. I had a slight limp, my balance was only beginning to get a little shaky, and I occasionally stubbed my toe on uneven surfaces due to the foot drop. But I wasn’t using a cane yet, and could still get from point A to point B quickly and in a straight line.

Nonetheless, I obtained a handicapped parking tag. I remember thinking, if I’m going to be saddled with this I may as well get some perk from it. After all, having access to parking spots closest to a building’s entrance was convenient, and I could fall if I rushed, so why the hell not?  Be that as it may, I had not yet entered the stage of being self conscious about my appearance. That changed the day I stepped out of my car to enter a local grocery store, and noticed a disdainful look from an anonymous passer-by that screamed, “why the hell are you parking there, you fraud!”

To be fair, I had never liked seeing someone who I didn’t think was disabled park in a handicapped spot, thinking it was selfish and self-centered. In fact, I never parked in one thinking it was bad karma, and that the Gods would somehow give me a reason to have to park there if I did.

But my vehicle clearly had the tag hanging from the rear view mirror, and I still got that dirty look, one that said “you’re not really sick.”

This self-conscious period didn’t last long because it soon became obvious I had an issue, and I had become so absorbed in what was happening to me that I didn’t give a rat’s ass about how the general public viewed me. Plus, once the shock that someone might actually think of me that way wore off, I soon came to realize I wasn’t the one with a problem, and never gave it another thought.

I remember this now because I’ve read a lot of chatter recently about the how general public’s attitudes and perceptions can make us self conscious about our appearance, and influence our self-esteem. This makes me very sad, and very angry.

So forgive me as I climb on my soapbox for a moment.

Reflecting on all of this has made me wonder what those who don’t know me think when they see me. Do they think less of me? Do they pity me? Does the sight of me make them uncomfortable? Do they notice me at all? Most importantly, do I even care?

Above all, I don’t want anyone’s pity, and I don’t need their sympathy because I’m fine with the way I am. And I don’t take offense if the sight of me makes people uncomfortable, because I think it subconsciously reminds them of their own mortality, which is scary.

And if my disability somehow reduces my status as a person in the eye of the beholder, they are a shallow ignoramus in my book who, in the immortal words of my basic-training drill sergeant, I wouldn’t give the sweat off my balls if they were dying of thirst.

The bottom line is I really don’t care what the outside world thinks, and haven’t for a while. Friends and family are different, but the general public? Nope!  I am who I am, and if that isn’t good enough, tough shit! But………..

It’s easy for me feel this way because I didn’t begin coping with my condition until I was in my late forties. I was well-established career wise, happily married, and wasn’t concerned about a roof over my head or food on the table. I’ve been blessed to have a spouse that is a genuinely nice, loving person, and not once have I worried she would kick me to the curb. My mobility wasn’t significantly impacted until my son was already in his teens, so I never lost the privilege of playing with him when he was young.

I still have my issues, not wanting to be a burden chief among them. I’ve been guilty of doing too much, and not asking for help. Those close to me, and K in particular, are already doing more than they should, and need a break. But I also see the pain and concern in their eyes when they see me struggle, and know they want to help. Maybe it’s because they feel helpless, and need to so something. It made me put myself in their shoes and imagine how I would feel. So my hardest lesson has been to learn it’s okay to ask for help, and show vulnerability, because doing the opposite does not make us closer. It disconnects us.

And since I am firmly entrenched as a middle-aged person – I hate to admit I’m getting old – I have the benefit of a perspective I would not have had in my twenties or early thirties.

I would have freaked out if I was stricken at that age. I’d think of myself as damaged goods, and probably do everything in my power to hide or downplay my symptoms so the opposite sex wouldn’t run and hide. After all, who is going to want to hitch their saddle on a broken horse? Nobody wants to be alone, and we especially don’t want to be alone because of something we never asked for.

That perspective also knows this would have been a fool’s errand, because presenting ourselves as something we aren’t is a betrayal of trust, and only leads to worse heartache down the road.

In a perfect world, everyone would understand that living with the physical burdens of a chronic condition does not change our core. It (hopefully) doesn’t change our personality, our sense of humor, our integrity, or any the things that make us who we are. Those attributes are what is most important, and should be the only reason someone chooses to  like us, love us, be our friends, or want to hang with us. Sure, the packaging is important, but lasting relationships are built on more than that. It’s sad to think this might be lost on some, but it’s sadder to let outside opinions change who we are, and lose ourselves in the process.

So my message, particularly to young adults, is I’m not minimizing that it hurts knowing our condition could influence how a person thinks or feels about us in a less than flattering way. It could also be the deciding factor when considering whether to take a risk and share a life with somebody. This reality is unfair, and can make anyone feel angry, frustrated and hopeless.

But it’s their loss, not ours. It can be a tough pill to swallow, but it shouldn’t change how we feel about ourselves.

 

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.

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.

 

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.