KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Today I'm going to talk about a side effect that is totally invisible, called cognitive dysfunction, or, as it is called in popular parlance, "brain fog".
Brain fog is particularly annoying as a symptom of an illness because you can't see it and it doesn't show up on tests. But for many people with varying disorders, it can be one of the most disabling aspects of their existence. Everyone's felt it. You're in a deep sleep and someone wakes you up or calls you on the phone. Your mind is sluggish, you can't think clearly, or remember critical information, and your anxiety is rising. There's something you need to tell this person, but you can't remember what it was. Fortunately, for most people five minutes time to wake up, a hot shower, and a cup of coffee clears it out.
But imagine if it never went away?
It isn't the same thing as dementia, mental retardation, anxiety, or depression. It's a purely subjective sensation, that your head isn't right, that there's a cloud around your thinking processes. It can certainly cause anxiety; imagine signing up to write a diary on a topic you know well, and be scared that you can't produce? That you'll forget when you were to have it uploaded, or that you'll stare at a blank page, unable to get anything out, other than, "I have brain fog. It sucks."
Many of us who have disabilities rely more on our minds. We work smarter, not harder. We do jobs that rely less on how well we walk and lift and stand than on how creative and intelligent we are. To discover that you can no longer count on the sharpness of your mind is a hard thing.
Many things can cause brain fog, and some of them are reversible. For many people, eating the wrong foods or not eating enough calories will cause it. It can accompany many illnesses, including heavy metal poisoning (in particular mercury poisoning), menopause, chronic fatigue syndrome, fibromyalgia, mood disorders, ADHD (primarily inattentive), drug abuse, and sleep disorders (including disrupted sleep).
For those playing along at home, I have inattentive ADHD and fibromyalgia. And am starting menopause. Yay.
I've learned not to count on my memory unless I write it down. And I have certain places I write it, so I don't lose it. I use rituals and routines so that I do things when I should. But I went out clubbing a month ago with only one brace on. My husband asked me a question in the middle of getting my feet ready, and I missed the fact that I didn't have one of my ankle braces on. Until that ankle REALLY fucking hurt about four hours later and I wondered why. And felt pretty stupid. Understand, I've been wearing ankle braces now for three years. It' s a habit to put them on, part of the routine of putting on shoes. I just...spaced it. I forget to put things back in the refrigerator, forget appointments, forget plans, and find it very very hard to do anything intellectual. On the really bad days, I can't even play solitaire on the computer. Too much thinking is involved.
This is not something unusual. We all forget something or don't think clearly from time to time. But this exists to a greater or lesser degree for me every single day of my life, and will in the future. And it is entirely subjective, like pain. And there's something else we know how to treat well, don't we?
Just as pain can be treated with a suitable application of opiates, the brain fog can be lifted with a small dose of amphetamines. When I am medicated, I am sharp as a tack, efficient, and relaxed. When I'm not...well, I'm in the fog, and always frustrated, and about to cry. ADHD is an indicator for stimulants, and I have a diagnosis. But there are more doctor's visits and more work associated with being on an amphetamine. A visit every three months is not something I can skip, and I have to go pick my prescription up personally and hand-carry the paper to the pharmacy. Both cost me money I have trouble getting. And there's only one pharmacy in town that stocks it, and now they won't even admit that fact on the phone. The war on drugs is my problem, too.
If you have brain fog, go to the doctor and see if there's a reason. If there isn't, I find that it helps to eat lower carb and more often, and to use routines and technology to get the most out of your mind, even on the bad days. Use the clear spaces when you have them, and do what you can when you're fogged, and there's often the possibility to enjoy life, even with fog.