Spasticity: The Double-Edged Sword
For example, this morning I struggled with what I call “two-by-four syndrome.” When I fall down, instead of being limp, my body becomes straight as an arrow, like a two-by-four piece of wood. This seems to me like miscommunication between the brain and the spinal cord. It is as if the brain is saying “Tighten the limb; it’s too loose.” If a caregiver wants to intervene and help, they do not expect the two-by-four syndrome. Often, neither do I! If I try to sit in a chair, I need to make sure my legs bend properly before sitting. If I don’t do that, it’s a recipe for a fall. This is one of the reasons that stretching is so important. I know that I don’t do it enough, but when I do, it is very helpful. But if I am in a situation with a great deal of stimuli, my body reacts by becoming stiff and rigid, and it takes effort to work through such horrible stiffness. The name for this type of stiffness and rigidity is spasticity. A while ago, my physical therapist said to me, “Mona, spasticity is your friend.” He was absolutely correct. Spasticity keeps me upright. Without it, my legs buckle under me, as they have several times. Just the other morning, I fell because I didn’t straighten my left, compromised leg, allowing the stiffness (spasticity) to take hold. I see this stiffness or spasticity as the proverbial double-edged sword: bad but also good!
Sunny Days Mean Worsened Fatigue
Another thing that is odd about MS is the way those of us who have it handle temperature. A beautiful sunny day is inviting to go on excursions or engage in other activities. But in my case, days like these spell nothing but trouble in the form of fatigue and weakness. Any rise in body temperature, however small, can spell disaster. As a result, I welcome gray, overcast days. I wonder if I would have seasonal affective disorder if I didn’t have MS. Actually, I remember being younger (prior to diagnosis) and loving sunny days, but now, not so much. The worst part about getting too hot is not even realizing that I have overheated and not being able to easily reverse the situation as I would like to. In other words, cold water or even rest does not bring me back to status quo. Overheating can cause me to feel so weak and fatigued that transferring myself to and from my wheelchair independently becomes impossible. That means I need help for things like getting into bed or going to the bathroom. Just the other day I had on what I thought was a lightweight fleece top, but simultaneously the woodstove was giving out heat. That is all it took for weakness to set in. I reached down to pick up something I had dropped, and I didn’t have the strength to get back up. You guessed it: I fell out of my wheelchair.
Intention Tremors Derail Simple Tasks
Another bizarre MS symptom, intention tremor, gets in my way when I decide to do certain tasks. The same task may be a great deal easier in the late morning as opposed to first thing in the morning. Activities such as putting on socks I find impossible to do first thing when I wake up. Sometimes I find that intention tremors take a while to calm down. Coupled with intention tremors, spasticity rears its head. Along with socks, I find trying to “aim” for a plug point to charge an electronic device is impossible until late afternoon or evening. And the inconsistency of this scenario is maddening, because on some days the plug goes into the outlet in the morning! How do I wrap my mind around this?
Inconsistent Mood Disrupts My Day
Sometimes I feel like two distinct individuals: One person in the morning, and a whole different person in the afternoon. If I plan an outing for the morning, factors such as emotionalism, or disregulated mood — which is dependent upon neurotransmitter activity in the brain, after all — causes chaos in my brain and as a result in my person.
‘Nonendurance’ Training Fails to Build Strength
Something I don’t seem to do is build strength. I wheeled around a manual chair for almost a year and the result was horrible fatigue. I never built up endurance. I thought I would, but the exact opposite happened. My friends with MS and I make light of this fact and call it our “nonendurance” training. To think that while everything I’ve described is taking place, we continue to degenerate. Wow! As if things weren’t bad enough.
Everyone With MS Is Different, but We Have a Lot in Common
I realize that those of us with MS are different from one another. We may or may not have the same symptoms. And even when we have the same symptom, the way we handle it may be different. Take, for example, the MS eye complication nystagmus, which is involuntary and uncontrolled eye movement that can impair your vision. How do we handle something as elusive as that? Or bowel and bladder unpredictability? Our symptoms are as varied as the universe, with our own brain being the universe in this case. So whoever came up with the saying that “the only consistent thing about multiple sclerosis is its inconsistency” hit the nail on the head!
