One of the side effects of living with ALS is that I have become extra sensitive, both emotionally and physically. ALS is a neurological disease and therefore it affects one’s nervous system, which is complicatedly and deeply intertwined in the body. I shall not attempt to explain the medical condition, but I shall tell you how this affects me.
Imagine my body like a box full of electric wires, making up my nervous system. Now imagine an electric current running through them all day long. Sometimes the current runs smoothly, other times it is broken, causing intermittent signals from my brain to my muscles. In turn, this makes my muscles twitch and throb, at times making them shake violently that you can actually see my skin vibrating. This could happen to any muscle anywhere in my body; one minute it is in my thighs, the next it is in my back, arms, neck, face, my hand, chest or foot. Unfortunately, this constant vibration of the muscles goes on most of the day and makes me feel fatigued most of the time. So, I keep distracting myself from this discomfort by watching TV, reading, working during my office hours, being surrounded by people, or the best distraction these days is working on my blog, ha ha.
All this miscommunication in my nerves makes me extra sensitive; if it’s cold then I feel extra cold, especially that I am also immobile, and if it’s hot then I feel hotter than anyone else. My body is so sensitive that if I go from one room to another and the room is 2 degrees colder, my body starts shivering, ha ha. My body also shivers when I am excited or nervous, so everybody thinks I am cold, it’s confusing I know, try living with this condition! Ha ha.
This sensitivity has also heightened my receptiveness to sound. Any sudden noise makes me skittish, ha ha. If the house is quiet and the doorbell rings for example, I jump and feel the ripple effect through my body. Or if there are too many people talking at once, I feel like someone is playing the drums inside my head, especially if the TV or radio are also on. Another funny fact is when my caregivers sit me down in any chair, I must be centered exactly in the middle of the chair or else I start leaning sideways like the leaning tower of Pisa (as Faisal calls it) ha ha. The same occurs when putting me in my bed, I must be exactly in the middle of my side of the bed or else I roll over onto one side. All this is hard for a healthy person to imagine, but I have absolutely no muscles to perform the simplest of tasks like balancing myself.
I have always been emotionally sensitive, but these days my nervous system has made me ultra sensitive; I tear up at the simplest thing like, a cute baby, an advert, or something more serious stuff like bad news, even if it’s about a complete stranger.
You might think I am whining or complaining, believe me I am not; I am simply stating some facts about how my nervous system is messed up. On the positive side, due to my sensitivity, I get the royal ‘handle with care’ treatment from everybody; they are constantly checking up on me and asking me; Are you hot? Are you cold? Are you comfortable? Do you need anything?, etc. I am pampered by everyone, and I am always the center of attention in the room, making me feel very special, and loved.
Despite being very sensitive physically and emotionally, I must confess I feel stronger than most people think – stronger mentally and a much stronger willpower to survive and beat the odds that are stacked up against me.