Age or MS?

faucet

I don’t complain about getting older. There’s no point to it, and besides, it beats the alternative. But one annoying and frustrating symptom has become exponentially worse lately, and I’m wondering how much of it has to do with MS.

As men age, it is not uncommon for us to have to urinate more often. From what I understand, the prostate increases in size and presses against the urethra, which prevents us from fully emptying our bladders. So when I found myself going more often at night and during the day, I wasn’t surprised. Besides, there is medication that helps remedy the problem, and when I first started taking these meds it definitely helped. But now these meds are as useful as tits on a bull.

To put it bluntly, I can’t hold my water, am constantly dealing with what I refer to as a leaky faucet, and it is driving me out of my mind. I have to wear pads to absorb the drips (and sometimes more than a drip) and have a urinal in my car in case the need becomes extreme and I’m not anywhere near a bathroom. I’m guessing that I’ve had to pull over and use it a dozen times over the past year.

I had the unpleasant experience of dealing with a kidney stone that had to be surgically removed a couple of years ago. It came as a complete surprise, and I hope to never experience it again. My urologist told me that if I didn’t consume a ton of salt (I don’t) and drink around 100 ounces of water a day (I didn’t), I would never see him again. From then on my water consumption jumped from practically nothing to that magic number. Keep in mind that water does not include coffee or beer.

So I know part of the reason I pee all the time is because my bladder is always full. But there is more to it than that.

First you should know that I typically start work between 5:30 and 6:00, and the first thing I do when I arrive in the office is get a cup of coffee (12 oz). Once that is consumed I start filling my mug with hot water, and consume 100 ounces between seven and noon. During that time I make the trek from my desk to the men’s room every half hour or so. Once the 100 ounces is consumed I don’t drink anything.

So, the other day I made three stops to the men’s room after my last mug of water, including as I was leaving the office for the trip home. Keep in mind it had been over three hours since I drank any liquid of any kind.

When I arrived home, 45 minutes later, I had to rush to the bathroom because the faucet was dripping. Then I went to the basement to work out on a recumbent bike I have, and had to inturrupt my workout after 20 minutes because I had to go again. Then after I returned and finished my routine (less than fifteen minutes later), I found that I had to go again once I got into a standing position. Once upstairs I sat for a while before getting up to set the dinner table, and had to go yet again. To make a long story short, I had to pee seven times in less than three hours, and this was long after I consumed any liquid.

It seems that anytime I go from a sitting to upright position, or do anything that could get things chruning, I have to go. Immediately! It’s as if gravity triggers the need to void whatever is in my bladder, and since my muscle control down there is much worse since the MS, the faucet begins to drip. If I don’t attend to it, it will become a flood. Fortuantely that hasn’t happened yet.

It’s maddening. I literally have to plan my day and where I might be going around the amount of liquid I’ve consumed and whether there is a bathroom I can use. I hate using the pads, but need them all the time. Who wants to feel wet all day long or, even worse, walk arond with a wet spot in a place it doesn’t belong? On the days I have my plasma transfers, I literally can’t drink anything for at least two hours prior to the procedure, because once it starts I can’t get up and aren’t supposed to move my arms. The dilemma is water helps fatten the veins, which makes them easier to find.

Age and MS are probably both at work here. I am obviously not emptying the chamber whenever I go (age), but the frequency and urgency in which the need arises is because I can’t hold anything (MS). It’s as if there is nothing to stop the flow once I stand up, which is maddening for someone who used to be be able to hold it all day long if necessary.

At least I don’t have this issue when it comes to empyting the intestines, which I know can be problematic for folks with MS. I don’t even want to contemplate what that would be like.

 

 

 

 

 

 

Route 60

Rt 60

When I wrote about turning sixty a couple of months ago, I talked about not obsessing about age, being on the home stretch of life, looking forward to retirement, and things of that nature.  All of that is and remains true, but something interesting has happened in the weeks that have followed, as I begin my voyage on Route 60 and beyond: I have become introspective about what that milestone means, and I can’t stop thinking about it.

This isn’t going to be a maudlin, woe is me lament, because I’m not sad, depressed or in any way discouraged. But for some reason a light bulb has gone on in my mind about life going forward, and I’ve embraced it.

I knew retirement was a place on life’s map I would eventually reach, but I never gave it much thought because it was beyond the horizon, not even a blip on the radar. It was more conceptual than real. Oh, I planned for it in terms of 401Ks and things of that nature, but it was more conceptual than real, out of sight and out of mind. Reaching my seventh decade has changed that narrative, and not in a bad way.

Once this house is built and we have moved, I suspect this will become the next big thing to actively plan for. I need to work for as long as I can because the MS makes me a heavy consumer of healthcare services, I want to keep my health insurance for long as possible, and get most if not all of the social security benefits I am eligible for, assuming it is still solvent. The time frame I’m working with is six years, and the one thing I have learned about aging is that time seems to pass a lot more quickly than it did in my youth. So it will be here before I know it.

There might have been a time when I looked at this scenario with doom and gloom. I could have viewed it as the beginning of the end, when I had one foot in the grave and another on a banana peel. I don’t see it that way now. Instead of it being the beginning of the end, I consider it the end of the beginning.

What is not to like about your time being your own, about not having to get up early to get ready for work? What  downside is there to planning ones day with stuff that you want to do, not stuff that you have to do. How can one not enjoy hanging out with your spouse and doing what you please. Granted, these years will also bring advancing age, and all the aches, pain and challenges that come with it, but I’m guessing they also bring a freedom that we only dream about when we are entrenched in a life dominated by kids, career and running a household.

I also know that being retired begins our final stretch of road in life, which can be unnerving. But that destination is like retirement was decades ago, a blip on the radar far beyond the horizon. So like the idea of retirement, I’ll mull that reality over when the time comes. My parents were both blessed with long life, passing at 96 and 92, so I am assuming longevity won’t skip a generation, the MS not withstanding. So maybe I’ll dwell on how much remains of that final stretch when I really am old. Like when I am in my eighties.

Meanwhile I am all in and looking forward to an empty nest to not having to shave if I don’t want to, and staying up as late as I want or sleeping in as much as I want. Maybe nothing will change as far as my grooming and sleeping habits are concerned, but it will be my choice.

I enjoy doing absolutely nothing, but that gets boring after a while, so I know K and I will need to find something to meaningfully occupy our time. I can see myself writing more, having all day at my disposal instead of the bits and pieces I grab now. The possibilities are endless, and I’m looking forward to having to having to make those decisions like a kid looks forward to seeing what Santa brought on Christmas eve. It’s a liberating thought.

Of course there is the issue of being able to afford retirement, but we have a good start on that front, and it will give me something else to plan for, which I enjoy doing. Even though I know the foundation in place will continue to grow, it’s hard to concentrate on that now as we burn through cash while the house is being built. I will focus on it like a laser beam once we are in the new house and have sold our current one. A clearer picture of our needs, and how much more can squirreled away while I remain a working slug, will emerge by then. There will no distractions or restrictions getting in the way of planning and preparing for building what we need to have our unfettered time together.

Six years should be more than enough to accomplish that. Getting reestablished in the new place is the first hurdle though, and that has created a separate vibe that grows as the house nears completion. More on that next week.

 

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.

 

The Saddest Day of the Year

Pool

I covered the pool on Sunday, which is always a somber occasion. This episode was particularly weird, because the temps were in the mid-eighties, the humidity was high, and I was sweating profusely.

When to cover the pool is always a tricky proposition, because there are years where you could easily enjoy the water in mid to late September. Yesterday was such a day, in fact, but the reality is it was a hectic day and nobody had time for a leisurly swim. The other reality is we get far less daylight than we did even a month ago, and the evening temps will soon dip into the fifties, all of which will conspire to drop the water temperature precipitously.

There have been occasions where I’ve waited until late September or early October before completing this task. But after I froze my cojones by immersing myself into mid-sixty degree water to help remove the ladder many years ago, I vowed never to repeat that fool’s errand. It was not a pleasant experience, and I have since erred on the side of closing it too soon instead of too late, to avoid repeating it.

We call it the saddest day of the year because it represents summer’s symbolic end, and the beginning of the inexorable march to winter. The best time of the year is coming to a close, and the worst one is on its way. Plus, the pool is depressing to look at when the cover is on. During the spring and summer, looking at the sparkling blue water and colorful pool liner leaves you with a good feeling. All we have to look forward to now is the drab cover that will soon have rain and rotting leaves floating on its surface.

What makes this year’s closure particularly sad is the fact that this may be the last time we enjoy the pool. Normally, when the pool is closed you know it will eventually be reopened, and you take solace in that reality. The difference this year is that there are no gurantees that will happen next year.

We should be breaking ground on the new house soon, and if things go well, we will be living there, our current homestead will be sold, and the pool will become someone else’s property before the real heat of next summer hits. A pool at the new place will not be a priority. We certainly won’t consider it in year one, and the truth is we may never install another one.

That thought brings a bittwesweet nostalgia, because that is not only the house that Shodan grew up in, but he lived in that pool for a long time after we bought it. Conversely, so did I, and we both had a of fun in those ten thousand gallons of water over a long period of time.

Even though Shodan doesn’t go in the pool much now unless his little cousins or other company visits, not seeing that sparkling blue pool every day will represent a lost chapter of our lives. The new chapter that awaits means he has grown into a fine young adult whose journey is just starting. It represents a new chapter for me too, but my journey has a lot of uncertainties and is also a lot closer to the final chapter of my story than it was when we installed the pool.

I’m not planning on moving again unless it is in a hearse, and I will be visiting a new decade when my birthday arrives in March, so not only am I feeling my mortality. I’m also feeling a tsunami of sentimentality at the passing of such an innocent period of time.

So the saddest day of the year was more melancholy than most. Change is coming, which is not always a bad thing. But when you open the door to change, another door closes as you walk through it. Memories of birthday parties, and Santa Clause, and frog ponds, butterfly bushes, and that pool will be all that remain when that door clicks shut.

It’s part of life, I know, but in covering the pool, we also wrapped that part of our lives in a burial shroud. I’ve never given that much thought because I try not to waste energy and emotion dwelling on stuff that hasn’t happend yet. But putting the pool to bed for the winter was more than symbolic. For me, it made everything we are planning feel very real for the first time.

The sense of loss is palpable and lingers, but I know that will fade once we start seeing the new homestead rise from the ground and feel the anticipation of something new. For now, there is nothing new, we haven’t broken ground, and a large part of our life is under cover, perhaps permanentaly.

It’s a sobering feeling.