After all, the words “multiple sclerosis” mean “many scars.” Most people outside of our community would think of those spots as causing the physical difficulties with which they might see us contend. Insiders know, however, that some spots are benign; some cause silent symptoms; our brains have worked around some via the process of neuroplasticity; and some cause cognitive rather than physical symptoms.
The Mist of My Cog Fog Is Thickening
Inside our MS bubble, we refer to this as cog fog, or cognitive fog. Of late, I have noticed that the fog has gotten thicker and that my memory has begun to give out in fits and starts of black spots. It’s particularly maddening as I come upon topics for Life With Multiple Sclerosis. The number of times I’ve been out for a walk, tending a garden bed, or in the shower (my most productive spot for blog ideas) and thought, “That would make for a great blog post …” only to have it disappear when it’s time to sit down and retrieve it has increased in the last months. It doesn’t feel like a progressive MS ramp of forgetfulness. This is the sort of abrupt jump in symptoms we’d be used to seeing in a chart showing the typical course of relapsing-remitting MS. It has become a bit worrisome, as this spotty memory has begun to make its way into other parts of my day, including conversations with my wife, Caryn.
Sometimes I Have a Hazy Memory, Sometimes None at All
Sometimes when she mentions a past conversation, it’s like I’m in a large, dark room dotted with pools of light. Sometimes I can see what is being illuminated. Sometimes I can just see the spot of light. Sometimes I can remember that there was a conversation but not the details. Sometimes, no matter how well she describes where we were and the lead-up and conclusion to the chat, it’s just not there. That’s the way it feels with these blog topics as well. As a means of dealing with this new and increasing disability, I’ve taken to jotting down a title, if nothing else, to help me remember the subject I wanted to address. Occasionally I open the file, and the writing just flows. Other times I look at the title and there is nothing in the pool of light. Sometimes no light at all. Often, particularly if I’m out on a walk, I may even fully develop the idea with an introduction, a few clever turns of phrase, and a general track line to where I’d like the piece to end up (after my signature ramblings). I get home, dry off the dog, make a coffee, and sit down to the blank screen that I yearn to fill … and it’s gone. Not even the subject is there to be retrieved.
I Will Find a New Way to Live, but It Stings to Need To
Somehow writing this — a blog about the difficulties of blogging — feels like the news reporting on itself. But for those living with multiple sclerosis and experiencing the advancement of cog fog into memory loss, I know that you’ll understand what I’m on about. As with other aspects of MS that I have folded up, put in my case, and carried on with me, I will have to find a way to live with this new symptom. There are memory aids I will try (if I remember to), books I will read (luckily, a friend just came out with one called Beating Brain Fog), and I will make the best of the situation. We’ve all become used to such adaptation in our lives with multiple sclerosis. It just stings a little bit more when it hits a new part of our life. A part where real joy resides and one that hadn’t been hit by this thief of a disease before. Wishing you and your family the best of health. Cheers, Trevis
