Always Making a Conscious Effort is Exhausting
For so much of my life, most of what I did was just second nature to me, as it is to most other people. When I wanted to get up off the couch and walk to the kitchen, I didn’t have to think about each physical step required to get there, I just walked. Not anymore though; now I am constantly aware of each step; the position of my heel and toes, the angle of my ankle, what direction my torso is leaning, how tense my core muscles are, where I intend to be in time and space after each step, and so on. The simple act of walking is made up of so many intricate moving parts, and usually, people don’t even notice them.
Having to think about every little thing
These tiny movements are second nature, things that our brain works on behind the scenes so that we don’t actually have to think about them. But so many of the things that my brain used to take care of on its own are now up to me to make a conscious effort to keep working properly. If I don’t take “manual control” over my body, chances are my “autopilot” will totally fail and cause me to trip and fall. This doesn’t just apply to walking though, it seems to apply to everything I do from the moment I wake up till the moment I go to sleep. It’s exhausting! Having to think about every little thing I do… I can’t imagine that this is not a major contributing factor to my fatigue!
The simple act of holding a glass
Now, walking is one thing. In fact, I can even see how someone could read what I just said and think, “well, yeah, if you have become more physically disabled I can see how walking could require more of an effort, but at least you can still walk,” and yeah, I am grateful that I can, even if it requires more effort. But here is another one that I am pretty sure a lot of people with Multiple Sclerosis (MS) can relate to: the simple act of holding something in your hand. Let’s say it is just a glass of water. Most people could stand it the kitchen with a glass of water in their hand and carry out a conversation with someone without even thinking about how they are holding the glass. I’m not saying they aren’t aware that they have a glass in their hand, I’m saying they probably aren’t thinking about how they are physically holding it; how a certain amount of strength is required to be able to grip that glass hard enough to not drop it while not so hard that it cracks in their hand. I feel like I can’t give someone my undivided attention when I have to make such a conscious effort to keep that glass in my hand.
It's really frustrating
So, you will almost never see me holding a glass that doesn’t have a handle, because so often when I am holding an object (such as a glass or a bottle of pills) in my hand, I will randomly just let go and watch it fall to the floor. Picking up a bunch of pills off the floor really sucks, but not like cleaning up a mess of wet glass that just exploded across the floor. It’s really frustrating because I can watch it happen; I can be looking at my hand holding an object, and then just let go of it as if the “wire” carrying the signal from my brain to my hand instructing it to hold on tight was just randomly cut. I almost always have to think, “don’t let go, don’t let go, hold on to it, don’t drop it” when I am holding something so that I don’t lose my grip on it. This is mentally exhausting, so I tend to just avoid holding on to anything that I wouldn’t mind dropping so that I can help lighten the load on my brain. In computer terms, it feels like my CPU (brain) is always working at 100% and never gets a chance to just relax.
Too much input
Another way I imagine a lot of what I have to do is like I’m flying a helicopter. I obviously don’t know how to fly a helicopter or a plane, but I imagine that in more modern vehicles of the sky, a computer handles a lot of the work so that the pilot can focus on what’s important instead of every single little gauge. But in the vehicle that is my body, I feel like I am sitting in a cockpit full of hundreds of tiny gauges that are both feeding me inaccurate data as well as spinning out of control and somehow I have to figure out what they are all trying to tell me so that I can keep my body from crashing. There is just too much input! I can’t keep up with all the data, interpret what it is trying to tell me, and keep myself functioning smoothly so instead, I inevitably will (from time to time) trip over my own feet or drop whatever I am holding because constantly trying to make a conscious effort to do the things that I never had to think about doing before is just exhausting! Talk about multitasking!
Does your employer provide workplace accommodations due to your MS?