The Mind Games We Play

Living successfully with multiple sclerosis requires some effort on the part of the diagnosed. In order to thrive with this disease, you have to try to live as healthily as possible, search for the right treatment, get tests done, and generally try to adapt to the changes that life with a chronic illness thrusts upon you. Over my years living with the disease, I’ve found that one of the areas that requires the most effort is maintaining a decent state of mind. No, I’m not talking about trying to blindly and naively push a positive narrative onto myself. I’m talking about the little mind games I have to play in my head to keep myself going.

Pain Changes You

Editor’s note: Chronic pain can be one the most debilitating effects of MS. If you or someone you know is struggling, please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat, and the MSAA toll-free helpline (800-532-7667, extension 154) and online chat.

When I was first diagnosed with Multiple Sclerosis nearly two decades ago, I thought I knew a good bit about the disease and what it was capable of (I’d grown up with a grandfather who also suffered with the disease, so was more knowledgeable than most). Of the many varied potential symptoms that I knew were possible, one of the ones that I didn’t expect was pain. At the time, I’m pretty sure it wasn’t even considered a symptom of the disease. Science and medicine have now advanced enough to know what many people with the disease have long told them, that pain is a significant issue with MS. I’ve discussed pain in MS on many occasions; it’s a symptom that I deal with, to some extent, every single day. This article isn’t to cover all the specific types of pain or their causes, rather, this is about what living with chronic pain every day does to you (to me anyway). In short, pain changes you.

Thinking Compromised

My roommate walks through the living room and asks me if I want to join her and some friends for happy hour, however, I give no response. My eyes acknowledge her, but in her words “seem glazed over” and I sit there, speechless. Inside that head of mine, my thoughts are a jumble; I can’t quite understand what she’s getting at. Words are floating around in a mist, some of them hers, some of them mine, and part of me is trying to grab on to them, any of them, to respond. It’s not simply a matter of finding the right word (though that happens often enough); I’m having trouble stringing cohesive thoughts together. I’m not only unsure how to respond, but I’m also not even 100% sure what she is asking. I finally utter something unintelligible before grabbing her arm and getting out “rough”. Knowing me, she takes it to mean that I’m having a rough moment and gives me time. Moments like this are extremely common for me, lasting between a few minutes to the better part of a day. This type of cognitive dysfunction is not only disruptive to my life, but incredibly frightening.

By OK, I Mean Normal

When you live with a chronic illness like Multiple Sclerosis, you are bound to get the question “How are you doing?” more than the average person. You know, often with that tilted head and eyes that seem to be saying “you poor thing”. This is a social grace, most people don’t really want to hear the real answer. I usually give them the standard “OK”, but I’ve started to think about what I actually mean when I respond like that. By OK, I don’t mean I’m actually OK, I definitely don’t mean I’m “good”. What I actually mean, is that I am normal. Everything is status quo for me, which I suppose I could look at as “good”, but I don’t think they would consider it good if they actually knew the details. So, what do I actually mean when I say I’m OK? And why do I even care if it’s simply a social grace?