So, this just happened. I got a text message, supposedly from Nikki Haley, who, in case you’re not into U.S. politics, is running for the GOP nomination for president: It’s Nikki Haley. Do you have a minute to talk, Erin?
I promptly typed STOP and blocked the phone number.
Honestly, who thinks up these marketing campaigns? I have no desire to speak with Nikki Haley or any of her surrogates, if that is, indeed, who contacted me. Nor will I speak with anyone who thinks my name is Erin. Nor do I have a minute to waste on this distraction. The only plus: it gave me the opening for this blog post.
Which is about the multiple ways that we are pushed and pulled in so many directions that it’s hard to focus on anything substantive. Which is exacerbating what I’m finding more and more frustrating: the fact that my memory and attention, while still quite good, are just not as sharp as they were for most of my life.
Some of this is aging. I commiserate with my peers about the inevitable experience of walking into a room only to totally forget why I went there. Word finding, especially when I am stressed, is like tugging on a rusty file cabinet drawer. When I get blocked like this, I end up relying on words like “thingy” to express myself. Then there’s the aggravation of having two ideas in my head, writing one down, and in the process, forgetting the second idea until I sit back and let my mind settle.
Some of this is also about too much multi-tasking and interruptions and distractions and beeping and dinging computers, phones, and what-have-you. Tech gadgets certainly make life easier. I can’t imagine going back to using a typewriter, not only to avoid the wear and tear on my hands, but also because writing on a computer is just so much more intuitive and seamless. I value my iPhone, a portal to the world. But of course, that’s just the problem. There’s too much going on all the time that pulls me from what’s really important and requires concentration. It’s also a great magnet for procrastination.
So, aging and too many distractions are certainly contributing factors. But some of what I’m experiencing is brain fog that is associated with scleroderma. I had a conversation about this with my Boston Medical rheumatologist a couple of weeks ago. While scleroderma, thank goodness, is not associated with brain damage as are some other autoimmune diseases, like lupus, not much is known about what happens to people who have had scleroderma for decades, like me.
The way he put it was that people are living longer with scleroderma than in the past, but there have been no rigorous studies about how the disease affects the brains of those of us who have been dealing with this for decades. It’s possible that there is some impact on blood flow to the brain.
I found one study from 2021 that associated mild cognitive impairment (MCI) with systemic sclerosis (SSc), but the most relevant predictive factors were lower education, poor nutrition, and high ANA positivity. There are other studies that point to some mild decline in cognitive functioning in people with SSc. But I have yet to see any focus on long-termers like myself.
I was originally diagnosed with SSc, but am now catergorized as having localized scleroderma (LoS). Given some internal organ involvement, I’m probably somewhere on the continuum between the two. Regardless, something is going on. Maybe brain haze is a more accurate description than brain fog. My thought process is not blinded by fog; rather, it just feels fuzzier somehow. And because I’m very aware of it, it infuriates me, which doesn’t help, either.
What to do? The best way to deal with this, my rheumatologist agreed, is by doing the obvious: get enough sleep, eat properly, and exercise. With the arrival of colder weather, I’m falling short on the latter, which I know really does help to clear my head. So I need to get out there and walk, even if it’s chilly.
What else? Ignore ridiculous text messages from Nikki Haley.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: Mathieu Odin
