It’s a strange thing, having a nervous system that doesn’t quite work right. I’m fortunate, I suppose, that my problem is an excess of sensation rather than a lack of it. But it doesn’t generally feel like good fortune when the misfiring, overactive nerves throughout my body are randomly and incorrectly informing my brain that something is terribly wrong.
It’s a condition that, for lack of a more specific diagnosis, is referred to as peripheral neuropathy.
I live day to day with pain. It’s not “real” in that there are no knives or fire or crushing blows to my arms, legs, neck, and face. But it feels real. Right now, as I type this, it feels as if I’m being clubbed behind the legs over and over again, and like fire ants are swarming under my skin in my arms, shoulders, and neck. The nerves in my feet are signaling my muscles that they should be contracting hard, for no good reason, so my feet are partly curled under, unless I fight against it, which at this moment I’m doing by pushing my toes against the floor.
It’s terrifying to me to know that this is a moderate amount of pain compared to what I feel without medication. Skip one dose of the medications I take to calm my nervous system, and a few hours later, I’m literally writhing on my bed in tears from the pain. Skip more doses than that, and I don’t even want to think about how it would feel.
I take an assortment of pills every morning, a few at midday, and more at night. These are my thin line of defense.
We don’t know why my nerves do this. We probably never will. I have recently discovered that adding a small amount of ibuprofen to my regimen makes a huge difference in how I feel, but after my gastric bypass surgery a few years ago, I’m not supposed to take any of the NSAID-class medications like that, so I’m playing with fire by doing so. I don’t, at present, care. It helps so much that I’m willing to risk it.
The level of my pain ebbs and flows over the course of the day. It’s usually worst in the two hours before my medication times and an hour or so afterward. The rest of the day, I usually can function okay, depending on various factors.
Cold is one of those factors; the cooler the air around me, the worse my nerves get. I dread the oncoming winter; already, the nippy fall air is causing taking my daughter to school in the mornings to be difficult.
Another interesting aspect of all this is that a side effect of overactive nerves is that contact, even gentle contact, can at times be painful. This is why you often see me show up to video meetings in my oldest T-shirts and soft exercise shorts or sleep pants: these clothes are soft, so they feel less like sandpaper. It’s not always enough, but it helps.
All this said, I’m incredibly glad that science has led to medications that help. There are times when they’re not enough, and we continue to look for the perfect cocktail of meds that keep me functional even more of the time, but I know from past experience that without these drugs, I would be in sad shape indeed.
In general, I know I’m a lucky guy. I have a family that helps me cope, colleagues that tolerate all the random downtime I have to take, and am able to afford medical care and the medications that keep me going. I’m fortunate to live in a time when there’s any form of treatment at all for this problem, even if it’s not a cure. There are times when I don’t feel lucky (it’s hard to be chipper when you’re in agony), but I know deep down that I really am.