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.

 

 

Done With Diets

done with diets

In the year plus that this blog has been in existence, I’ve penned two posts about diet and weight control. The first time, written almost a year ago, was a lament about how and why I needed to lose weight. The second one, posted a little over a month ago, was more of the same, as I had embarked upon another weight loss quest and reached half of my goal but was no longer invested in the process.

Since that day, my weight hasn’t strayed much, hovering between a pound or two over or under the number I was at when I wrote that last post, and have managed this without following a program of any kind. Suffice it to say I never reached the goal I had set when this “diet” started, but one good thing has emerged from the effort. I’ve decided to stop torturing myself. I’m done with diets.

This doesn’t mean I’m going to throw caution to the wind, eat whatever the hell I feel like whenever I want, and morph into Jabba the Hut. But participating with formal programs of any kind are over, so no more weighing food, no more tracking points, no more agonizing about what I do or don’t eat. No more feeling guilty either.

Why I have thought I can get this body to become what it was twenty years ago, with MS, mind you, is beyond me. It’s taken a while for my ego to reach this place, but I’m content with where I am. Sure, the flesh around my beltline is not as firm as I’d like, and I would have liked to reach the last goal I set. But I’m not fat, and the inconvenient truth is that I am pushing sixty, so my metabolism is different.

When I first went on weight watchers, shedding weight was easy, and I lost over thirty pounds in four months, getting to a weight I hadn’t seen since high school. I was sold on the process and, once I got off the program to maintain things on my own, believed I could revert back to the plan if I ever needed to. It would be like having an Ace in my back pocket that I could use any time I felt necessary.

As it turns out, I did re-up with WW on four different occasions since that first time, but each experience was harder to sustain, and my motivation to follow the plan was nowhere near as iron-clad as it was during that first experience. For the most part, I reached each goal I set for myself, but it took longer to get there and my enthusiasm for subjecting myself to deprivation was less and less each subsequent time. So much so that once I had lost close to ten pounds this time around, I decided I had enough, even thought I had another ten to go.

My MS journey has deprived me of a lot, and I have adapted and survived. The simple pleasures in life have become more important to me. At my age, I’ve earned the right to chill out a little and enjoy those pleasures, and food is high on that list. I’ve know what needs to be done in terms of maintaining a weight range I can live with,  so as long as I don’t puff up like a Blowfish, I no longer care if I have a slight paunch in the midriff.

Besides, I’ve been too hard on myself. From general observation it has become obvious that I am in better shape than most men my age. I can still look down and see my toes. I don’t have to suck my stomach in and hold my breath when I bend over to tie my shoes. My clothes still fit, and I still look good, so I have no reason to feel self conscious about my weight. After all these years, my vanity is perfectly happy with the status quo, so I’m going to stop believing I can or need to  get back to a thirty four inch waistline.

Besides, if I actually did get back to a 34 I’d have to buy a new wardrobe, so think of all the money I’m saving.

It’s a liberating feeling, this newfound freedom. I just have to make sure I don’t abuse it, and change certain habits concerning when I eat instead of what I eat. Winter is looming, and that has always been the hardest time of the year for me.

I’m not throwing in the towel, I’m just getting rid of the crutch. I’ve managed this on my own for over a month now, so the spirit remains willing. If manage the holidays appropriately, I should be golden.

A Once-Familiar Routine

IV

Later this morning, after having spent a couple of hours sitting in a comfy chair hooked up to a centrifuge for the apheresis procedure, I will receive my second full dose of Ocrevus. There is nothing remarkable about this, other than the fact that I don’t remember how I am going to feel for the remainder of the weekend. This is ironic because there was a time when I knew exactly how the weekend was going to play out, and planned accordingly.

From 2009 through last September, a span of over eight years, getting a Friday infusion was a monthly ritual. The drugs were different, but the routine was the same: get hooked up for the apheresis, sit for an hour and a half or so,  then have the sewing needle in the crook of my elbow in one arm removed while the remaining smaller needle in the other arm would be hooked up to an IV bag. Then I’d sit another couple of hours, napping for most of the time, while the drugs were administered.

When it was over, I’d drive home and settle in for the weekend. Friday evenings were spent lounging as a heavy fatigue set in. Other than dealing with periodic hiccups and feeling very warm on Saturday, I putter around the house or do a few errands that weren’t too taxing, just to make myself feel useful.

Sunday was a lost day, when the brunt of the chemo’s side effects hit. My head felt like mush, crushing fatigue would set in and I’d spend all day in bed, either watching television or nodding off. One of the first posts I wrote for this blog described in detail what those Sunday’s felt like. Refer to the chemo drug paragraph of that post if you want to refresh your memories.

The worst thing about this regiment was that it killed one weekend a month. This may not sound like a big deal, but trust me, it was. An every four or five week commitment doesn’t sound bad on the surface, but these infusion weekends often fell at an inopportune time, especially during the holiday seasons.

What appealed to me about Ocrevus, besides the fact it was supposedly designed to help those of us with the progressive form of MS, was the infusions only occurred every six months. The idea or losing two weekends a year instead of twelve sounded like Nirvana. If I’m being completely honest, that fact by itself swayed me to make the switch.

I still get the plasma transfers every month, so it isn’t like I’m appointment free. But those only last an hour and a half and, other than being very tired the evening after the treatment, there are no side effects, and I am as good as new the following day. I have more freedom because I don’t have to worry about having to reschedule a weekend event or the infusion itself because a personal conflict. I also feel less of a burden to K, who had to plan her weekends around an absentee husband.

I’m a little more apprehensive about the getting these infusions than I used to be, and I attribute that to not remembering what tomorrow and Sunday will be like. I have a hard time remembering what I ate for dinner yesterday, so trying to remember what the weekend following an infusion I had six months ago was like is futile

I believe today and tomorrow will be fairly benign, and that Sunday will suck, but what will the degree of suckiness be? Will it be a shutdown Sunday where I don’t leave the bedroom except to go pee, or will it be worse? The first few times I had my original infusions, I could barely open my eyes, my head felt like it weighed a thousand pounds, and when I was mobile, I felt like I was walking in quicksand.

Will it be that way again on Sunday? Will I have a better experience because my body isn’t saturated with the stuff? Or will it be worse because my body isn’t used to having these heavy duty meds infused?

This leads to the question of whether taking these meds is worthwhile. I have never felt remarkably better after the infusions, and while I assume these meds are helping my condition, I can’t say for a fact that they are. What I do know is my progression has proceeded at a snail’s pace for the past eleven years, but the big question is if that is  because of pharmacology,  or is it simply the nature of my MS beast, and taking or not taking meds doesn’t influence it one bit.

One of these days I’ll either learn the answer to that question, or simply get tired of taking this stuff and get off the pharmacology treadmill. For now I will stay the course, but maybe I should take notes about how I felt this weekend that I can refer to next March, when the next infusion is due.

That way I will know what to expect instead of guessing what it is going to be like. The more anxiety I can eliminate from this equation, the better.