Category: Anxiety and worry

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.

 

Tell Your Mind to Shut Up

scream

The brain is an amazing organ, a super computer that far exceeds anything technology can fathom, and hopefully never will. On the medical front, numerous clinicians have told me it is the final frontier, the one true mystery that remains to be solved, certainly not in my lifetime. Perhaps never.

The brain controls everything, and is also a focal point for those of us who suffer from MS. Some of us have lesions on the brain, some of us have demyelination of the spine, and some of us have both. Today’s focus however is not on the physical aspects of the brain and how it relates to us, but the mental aspect. If we let our imaginations run wild and generate fear and anxiety about our present and future, we aren’t doing ourselves any favors. Simply put, we have to tell our minds to shut up.

Easier said than done, admittedly. We can’t change our DNA, or how we are hard-wired. Some of us are more anxiety-ridden, or prone to bouts of it, than others, while some are better at letting things slide. But nobody who has a chronic illness is exempt from thinking about the implications of their reality. Even those  who are more kumbya and better at letting things slide struggle from time to time, and I am a textbook example of that.

I’ve stated a number of times that my attitude is not to dwell on the what-ifs or the why-me’s, and I stand by that. I try to keep my condition at arms-length, and lock it inside a secure vault somewhere in the recesses of my mind. However, there have been and continue to be times where the doubts, which I call Messi*, break free of the vault and run amok. I can feel the physical fallout when that happens, and the struggle is to corral Messi and drag her sorry ass, often kicking and screaming, back into the vault, and double the locks.

For instance, when the symptoms first started to appear and I wasn’t yet diagnosed, I didn’t have a clue what was going on, but I knew it wasn’t good. One train of thought was that I might have ALS, which really freaked me out. It was actually a relief when I learned it was “only” MS.

Every time there was a new twitch or strange sensation, Messi started speculating on what it meant, and it was never kind. As my progression slowed with the help of a good neurologist and the drug/apheresis routine he placed me on, I came to terms with my condition. I set it aside and worked hard to not let it rule my life.

Still, when something changes, I hear Messi growling. For instance, when the progression rose above the knee and made everything harder, it was hard to ignore. I started doing the math, which went something like this: I’ve had this for ten years, and for the first two the symptoms progressed quickly, stabilized, then progressed again this year to where it is now. So that either means I’ve got another ten before I really have to start worrying, or it means that I’m wheelchair bound in two to three. Therefore, I need to do a, b and c. But what if it happens more quickly? What happens if I can’t work, etc., etc., etc.

Here’s another example: I do a lot of keyboard work, and have always been able to type quickly and accurately. I never look at the keyboard. Once I got MS, I noticed a more typos, but dismissed it because they didn’t appear to be too many to dwell on, and thought I might be noticing what has always been there because of this new thing I was dealing with. Now, however, I can’t type a paragraph, and sometimes a sentence, without a typo of some kind. In fact, I’ve made four of them in this one sentence before I cleaned it up.  Does this mean the MS is beginning to progress into my hands, or is my keyboard getting old and decrepit? If I go down that particular progression path, I’ll be a basket case. So I deposited this concern in a separate compartment inside that vault, and will address it during my next neurologist appointment.

One last example: I participate in a number of message boards for people living with MS. I view myself as a MS veteran, and consider it important to give back and share my wisdom and experience, particularly to those who have just been diagnosed. Being part of these boards makes me feel useful, and also provides ideas for things to write about in future blog postings. Unfortunately, it also makes me realize how better off I am compared to what I read. There are so many people who suffer far worse than me, and are dealing with a lot heavier shit that I am in terms of family, relationships and other personal matters that I never considered. Messi feeds on that, and is begging to whisper “that’s going to be you” in my ear over and over again, trying to make me a believer. I know I have nothing to worry about on the family side of the equation, but the physical part? I already knew that everything they mention is part of the deal, potentially. But actually reading what people endure and what it does to their lives is more agonizing and makes it real. That could be me. Who the hell knows?

So it is a constant battle to keep Messi locked away and sedated, knowing full well one trigger event could occur that will unleash her, and perhaps make her impossible to contain. I don’t doubt the unleashing part of that scenario, but I would like to think that I will eventually be able to reel her in, somehow. Like I said, we are who we are, and I am a glass-half full, eternal optimist kind of guy. That will be my saving grace.

After all, we can’t change the cards we were dealt. Bemoaning our fate only shines a light on what we’ve lost, and can lead us down the slippery slope of what an uncertain future might bring. This train of thought only serves to add more stress that will stoke our anxieties and often raise hell with our symptoms. It’s fruitless and self destructive.

I saw a question posted on a message board recently that asked if we mourned the person we once were. I didn’t like what the question implied, because the me who didn’t have MS isn’t dead. I wasn’t body-snatched while everyone was asleep and replaced with a clone. I’m still the same guy, albeit one who limps like quasimodo seeking sanctuary, is in danger of falling every time he gets on his feet, is in danger of falling down the stairs if he isn’t careful (two more typos corrected), and has a hard time putting on and taking off his underwear, socks and shoes every day. I still have the same values, the same feelings, the stuff that made me the unique person I am. The only thing that has changed is my perspective. I’m not terminal, for God’s sake.

I’m fine with the premise that, in the words of a fellow blogger, it is okay to not be okay. https://msgracefulnot.com/2017/11/28/its-okay-not-to-be-okay/

And, I don’t see that changing, as long as my mind doesn’t provoke Messi.

 

 

*Messi is a play on words, combining the term MS with mess, which it does with my head. I refer to Messi as she because, in my opinion, females have the knack for pushing men’s buttons. I also believe while they are the more protective species in the animal kingdom, they are also more vicious.