The Hardest Part of My Day

dressed

I love sliding into bed at night. By that time, my body is tired and stiff from having to carry itself on one good leg throughout the day. My hip is sore, my lower back is barking, my foot is dragging terribly because I can barely lift it, and my knee won’t bend without a significant effort. In fact, it is ramrod straight, and almost feels like it is hyper-extended, although it doesn’t hurt.

When I slide under those soft, warm covers,  I can feel my body exhale and melt into the mattress. It feels like I’m weightless, and this poor body, that has trudged and wobbled around all day, finally has a chance to lay prone and release the pressure that has coiled inside it.

The flip side of this is that I have to drag my ass out of its warm cocoon the following morning, which is often the most difficult accomplishment of the day.

First of all, it’s a struggle moving in bed, other than the periodic leg twitching. Turning onto my side is an endeavor, particularly when I turn to my left. The only way I can accomplish that is to reach across the mattress, grab onto its side with my right hand, and literally pull myself onto my side. Turning to my right is easier, but instead of grabbing the mattress, I have to tuck my right arm behind my back and flop over onto my side, like a fish out of water. I therefore have a tendency to sleep on my back all the time, which has forced me to sleep with a pillow under my knees to prevent my back from getting sorer and stiffer, which further complicates the turning process.

So by the time my alarm alerts me to the new day, my body is fully rested, but it also feels like it’s one hundred years old. You see, I can’t just sit upright from a prone position anymore, and as I have already mentioned, turning on my side isn’t as easy as it sounds. Getting out of the left side of the bed is almost impossible, so after I turn to my right, I literally have to shimmy my lower half to the side of the bed, push myself upright, then gently grab the bad leg and place it on the floor. The good leg easily follows.  That’s the simple part.

My leg is the weakest first thing in the morning, so I feel like a newborn colt when I stand for the first time every day. They are also unsteady and, like the colt, it looks as if I am learning to stand and walk for the first time. Compound that with poor balance, which is also at its worst first thing in the morning, and I’m sure I look like a staggering drunk as I make my way to the bathroom. I literally have my right hand on the wall from the time I get out of bed until I reach the bathroom, and there have been many times where that short distance from the bed to the wall almost ended in failure. It feels like gravity is doing it’s best to suck me down onto the floor, but it hasn’t happened yet.

I am a lot steadier when the morning bathroom routine is completed, but the limb is still very weak. The next mountain to climb is getting dressed. Getting my clothes on above the waist is a piece of cake, but not so much with the lower half. Underwear used to be an issue until I learned that the easiest way to get them on was to simply grab the bad leg by the ankle and place it where it needs to go. Same with the socks, but there are two complicating factors in play.

The first is that I am not flexible at all, and I don’t think any amount of stretching, which is hard to do in the first place, will change that. If you have ever strained your lower back, you how difficult it is to put any article of clothing on your legs or feet. That’s how it is for me, minus the searing back pain. Some mornings, the body is so stiff that it feels like the act of getting my leg high enough, and bending my body forward enough to get my socks on, will result in a hernia, a rupture, or a complete blowout of the lower back. Maybe all three.

Then there is the balance issue. Most people think that balance is an issue when one is standing, but it can also be a problem when you’re sitting. When I’m getting dressed, if my butt is to too close to the edge of the bed, and I’m leaning forward a little too far, gravity will take over and I’ll crumple to the floor. Falling is embarrassing enough when you’re upright, but falling when you are already sitting down would be the ultimate humiliation, even if nobody is there to see it. It hasn’t happened yet, but I have come close several times. Mostly when my mind is somewhere else.

So now the chore is almost complete. I am fully dressed and ready to take on the new day, but before that can occur, I have to take my first trip down the stairs. This is the most perilous thing I do all day, not only because of the unsteadiness, but also because I have my socks on, which tends to make the wooden stairs feel very slippery. Plus, it is dark, so I make sure to count every one of those fourteen steps until I reach the ground floor. One hand is firmly on the rail and the other is sliding along the wall when I make that trek, which helps not only maintain my balance, but will keep me upright if the foot slips or the knee doesn’t bend and I lurch forward unexpectedly. As you can tell, I fear falling down those stairs. I don’t think it will ever happen, but I believe that if I were to ever suffer a life-threatening MS related mishap, falling down those stairs would be the most likely scenario.

Once I’m downstairs, all I have to do is get my stuff together for the ride into work, followed by the final act of putting my shoes on and tying them, which often takes two or three attempts. You see, the AFO brace I wear is in that shoe.  I have to hold the leg by the calf and aim my toes into the shoe. Once they are in, I can lean forward, hold the back of the shoe with my fingers and slide the rest of my foot in, before I tie the strings. I’m sure this process looks very odd to someone who witnesses it for the first time.

Now I’m golden. The stiffness that existed twenty minutes earlier is gone, and my strength and balance is starting to come back, although it will take another hour or so to reach maximum capacity. I’m ready for the day and all that comes with it.

By day’s end, the body is once again tired, ragged and spent. I’m off my feet for most of the evening after dinner and the evening chores are done. My rocker recliner calls and welcomes me as I watch television with my wife. Once it is time to turn in, the legs protest having to carry my 190 plus pounds once again. It actually feels like a thousand pounds, but I shuffle up those stairs one last time to start the bedtime routine, then slide under those blessed covers and let the tension melt away. It has become my favorite time of the day.

I wish I could say the same thing about the next morning, but one has to look at the bright side. At least there is a next morning.

The Auto-Immune Irony

illness

The symptoms were subtle when I was first diagnosed, but after a few years into my battle with MS, the progression became steadier, and I began to use a cane whenever I left the house. The interferons I was injecting myself with weren’t doing a damn thing, and I had become dissatisfied with my neurologist because he appeared unsure about how to proceed. In fact, he once called another neurologist to confirm a thought he had while I was in the office with him. This didn’t inspire a lot of confidence, so I decided to make a change .

I work for a large health system, and when I asked my boss if he knew anyone in the MS field I should consider, he deferred to the organization’s Medical Chief of Staff for a recommendation, and was given the name of a neurologist close to where I work, who was reputed to be one of the best clinicians in the state. I made the switch, and later learned that he was the guy my former neurologist had called that day.

During our first appointment, he declared I should change medications, which made me happy. I had come to hate injecting myself, particularly when I didn’t notice any improvement whatsoever on the progression front. In hindsight, I don’t know why I agreed to take them in the first place, because I knew they were designed more for the relapsing remitting (RRMS) kind, than the progressive kind I had. Tysabri wasn’t an option because the blood test he ordered when I scheduled the visit indicated I had the JC Virus. After listing the options available to me, he recommended I start monthly infusions of steroids and a chemo drug called cytoxan.  Shocked might be too strong a word to describe my initial reaction, but I was definitely surprised and confused. I mean, how in the world would a cancer drug help me. It seems silly now, but all I thought about at the time was getting sick and having my hair fall out, and asked him if I would have to deal with that.

He assured me the dose I would be getting wouldn’t cause those side effects, and I would be given an anti-nausea med just in case. When I asked why he believed this was the appropriate way to go, he explained that MS was an auto-immune disease and described what that meant. To paraphrase,  my immune system had run amok, and my body was cannibalizing itself in terms of the demyelination  that had occurred. The chemo would suppress the immune system so it would stop attacking my body, thus putting brakes on the progression. This explanation made sense, so I consented to the monthly routine.

This decision was made with a lot of trepidation that I didn’t share, because I didn’t want to sound like a wimp (I don’t have that issue anymore). Part of the anxiety evolved from the fact that I would be getting monthly blood tests to check my liver enzymes, because the chemo had the potential to fuck up my liver, which thrilled me. There were other things they would be checking to make sure the chemo wasn’t doing more harm than good, but that was the one that I latched onto.

My other fear was I would become susceptible to every germ known to mankind, because I would be shutting my immune system down. Consequently, I assumed I would be sick all the time, catching colds and any flu bug or any virus that was floating around. I thought the winters would become an especially miserable, unending chain of one illness after another. After all, wasn’t this a logical assumption, given that my front line of health defense was going to be taking a siesta? I was afraid that the devil I didn’t know would become worse than the one I did, but hoped that the reality would be different, and that the treatment would turn out to be the lesser of the two evils.

That was seven or eight years ago, and I look back at that time with amusement. Why? Because the weirdest and most ironic thing that has occurred since I’ve been getting these infusions, is that I’ve been remarkably healthy. Unusually healthy, in fact. Just mentioning it makes me wonder if I am jinxing myself for the upcoming cold and flu season, but I can’t deny the truth.

When I first started the treatments, I may have encountered the occasional cold, sinus infection or flu. I can’t say for sure because I don’t remember those kinds of details from that long ago, but if they did occur, they were far and few in between. What I can say with absolute confidence, is the last cold I had was two or three years ago, and it was short-lived. I don’t remember the last time I was sick with the flu, had a stomach virus, or anything like that. Last year, everyone in my household had something, and had it on more than one occasion.  I also work in a large office, where everybody was sick at one time or another. Not me. I was the oasis of health in a sea of sickness at home and at work. I’m sure germs were floating all around me on a daily basis, yet I remained unscathed. It’s bizarre.

Is this pure coincidence? I think not. I believe that even though I’m trying to put my immune system to sleep, it remains overactive enough to shield me from the maladies that latch onto everyone else, yet not so active that the progression accelerates. I guess my neurologist knew what he was talking about.

This winter is going to test this theory, because I have switched to a new chemo agent that I will take every six months, instead of one Friday every month. You see, even though I didn’t get sick, I felt like I had the flu every Sunday that followed the Friday infusion, a parting gift from the chemo. This new drug will be administered twice a year and actually kills certain cells (T cells?).  I assume this means the drug is stronger, takes longer to get out of my system, which in turn means it takes longer for the cells that it kills to be replenished enough to give them another whack. My next scheduled infusion isn’t until March, so it will be interesting to see if I will enjoy another illness-free winter. Should that occur, how can I not conclude that my over-active immune system is like Pac-Man, gobbling up every germ seeking shelter before it can settle in my sinus or gut?

A definite plus, but I’d rather have two good legs.