The Difference Between Brainfog and Forgetfulness

Really? I’m dedicating an entire post to brain fog?

Yup. Because after I go through all the technical explanations about my (insert whichever chronic illness I am trying to describe here), brain fog—more than anything else—leaves people a bit perplexed.

While one can often scientifically (and laboriously) describe the effects chronic illnesses have on the body, brain fog can come across as more of a general, non-specific term. I mean, look at it. Brain fog. It’s like the name of a slapdash band from the 1980s or something my nephew made up.

Regardless, even while the medical field doesn’t always acknowledge it (though recently I have had more doctors recognize it), and a slicker sounding name might be better (i.e. Cerebrum stuffyconfusa…?), it doesn’t make it, or the massive frustration is brings, any less real.

I have always had a sharp memory. Freakish even. Tiny details of what a stranger was wearing at my brother’s graduation party when I was 6, where a specific bit of information is in a 500-page textbook, birthdays mentioned in passing.

But things are different these days.

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More often than I would like, I am in mid-sentence when I completely shut off. Mouth agape, eyes rolling around in my head as I desperately try to think of that rudimentary word. (It’s “door,” Sarah! Door!) Sure, lots of people forget what they were going to say but with brain fog, I forget everything I was saying. Often times, even after I’m reminded of what I was talking about, it takes me a good minute or two to call it back to memory. Additionally, how embarrassing is it when you have to sit there for 20 seconds to recall a word like “door?” “I walked through the…” “Reverie? Time-space continuum? Electromagneticastrosphere?” “Um… no. The thingy that does this: *hand gestures*

Thankfully my family and friends are aware of this, but when it happens with strangers it can be mortifying.

Similarly, I often forget what day it is. Then I forget what day it is five seconds after I ask what day it is. If someone requests for me to bring them something, I’d say 10 percent of the time I actually remember to do so. I forget doctor’s appointments, responding to email/phone calls from people checking in to see how I am, changing the oil in my car.

(Personal lament: I love words, so it’s always extra fun when, after sending an email, I find I forgot how to spell something. Or, if that isn’t enough, I’ve completely omitted words from a sentence and/or substituted a completely unrelated word. “Dear Boss, I have the book busy today. Thanks!”) Sigh.

Most of the time I’m able to get a kick out of these things, but brain fog can also have more detrimental effects.

I have been taking my medication at the same times every day for years, but there have been weeks where I just completely forgot them. And it isn’t like my routine had changed at all. Work didn’t start at a different time or I was at someone’s house in a different time zone. Things were exactly the same... I. Just. Forgot. Then, of course, because I’m missing meds, my symptoms get worse, which means I get more brain foggy, and more spectacular emails to my boss are sent.

How much water have I had today? It has to have been a couple liters, right? (Try barely a glass full.) Did I forget to send my nephew a card for his birthday? (Damn it.)
I even have to make a note to, “make a note of things to do today.” And don’t get me started on how demoralizing it is to try to sit down and write. I haven’t been able to focus for months.

However, out of all this information, I think this may be the most important to understand: Forgetfulness and brain fog bring about two different kinds of feelings because they are two different things. Sure, I’ve been preoccupied in my thoughts and then found myself trying to remember what I was going to do next; being forgetful makes me feel flighty. But having moments while driving where I honestly cannot remember where I am going, where I am, and how I got there? Brain fog makes me feel frustrated, panicky and confused.

And it’s hard. Transitioning from someone who could remember the weirdest details to someone who now has to think for 30 seconds to remember her 10-year-old dog’s name? When people chalk it up to forgetfulness, it makes it even harder. Forgetfulness comes across as something you can work on; brain fog, just like chronic pain, dizziness, other symptoms, etc., is something you have to cope with and adapt to.

So what can family and friends do?

Please, please be patient and understanding. Chances are we are already ripping ourselves apart for forgetting to get a birthday present for our niece, or not getting the tickets to the movie, or spacing on filling up the cat’s empty water bowl. Also, when we blank out in the middle of the sentence, stay with us and appear engaged. A look of understanding can go a long way in that moment where we feel like complete idiots.

Find a gentle way to remind us. I admit, I’m a bit of a proud person, so I can get a bit defensive when my someone asks how much water I’ve had or if I’ve taken my meds (especially when I’m already frustrated at myself for forgetting). But I need it some days. A designated note-spot by the fridge or on the phone helps for other things. I have a calendar now and write things down in like, eight different places.

Lastly, assure us it’s OK. Being exhausted and not being able to do the physical things you want? It sucks. But, on top of that, forgetting “simple” things, important things like calling your best friend, and just feeling all stuffed up in your mind? That really sucks. So give us a big hug and/or tell us it’s OK when we beat ourselves up about it. We often need to be reminded that we’re not a big ol’ burden even though stuff falls out of our heads sometimes.

Can I Get a Punchpass Please?

So, my health has been less than stellar the past couple weeks. Thankfully, it's been somewhat manageable (I've been able to bathe, fix myself simple meals, etc.) but it hasn't allowed for a lot of that necessary extraneous energy that helps keep homes in a livable state and silly things like that.

I was diagnosed with another chronic illness at the end of December (which I'm still processing) and whether that ties in to how cruddy I've felt, I don't know. I doubt it, because I've probably been dealing with this issue for years. But, regardless, I've decided I would just like a punchpass on my chronic illnesses if I could, please.

I think most people with chronic illnesses probably would, honestly. In fact, if we could have a quota, that would be super awesome. "I'm sorry, potential new illness. I already have two illnesses with slightly mind-numbing pain, so we're all stocked up here!" or "Hello, new unknown hurt - I already one illness with I-want-to-shit-my-pants pain so if you could just move along, that'd be awesome!"

But it doesn't work out like that.

And, more importantly, rarely do people with chronic illnesses generally allow themselves to think like that.

We're the grin and bear it types (and we often pride ourselves for that). We're the types who are in-tune with the world, more so than most, that we can still see how good we have it. We can rationalize that some people are dealing with cancer, some people don't have warm beds to nap in, some people don't have legs to even ache.

And while this is an exceptional mindset to have and take with us, I think some days we just need to look at the hand we've been dealt and allow ourselves to be pissed off about it. It may not be the worst hand ever. There may be millions of other people who were dealt more variations/amounts of crap than us. But that doesn't (nor should it) take away the fact that this is still our reality. We are still in pain. We are still suffering in our own ways, too. And to deny that, to ourselves or to others, does not serve anything.

I'm a big advocate of "giving up". I wasn't always this way, though. In fact, I was probably as far on the other side of the spectrum as one could possibly go; when life knocked me into the shit I always bounced back up immediately. Because I am stubborn. Because "that's what strong people do". Because lying around feeling sorry for myself wasn't going to fix anything. And while some of these may be true, constantly getting knocked down and immediately standing back up again is ex.haus.ting. Mentally, physically, and emotionally. And it took me a long long long LONG while to realize that, on some occasions, I had to give myself permission to stop and lie in that pile of shit. To say, "Dude, I'm in a pile of shit right now. And this shit sucks. I am not happy about this shit."

Because how can I accept my situation if I don't ever fully acknowledge it? If I don't let myself feel, to the very depths and ends of my feelers, the emotions I have about it?

And you know what? I know, at some point, I'm going to get back up again. That's just what I do. That's just how I'm made. But I have to honor the part of me, the feelings I have, that aren't always so warm and fuzzy and positive about my chronic illnesses. I have to let myself lie in the shit and look at the stars and bitch and moan a little bit while I renew my strength so that, when I am ready to get up and fight again, I will have a new place to start from. I won't have to carry buried resentment I might have for these illnesses, because I'm already shouldering enough weight carrying the illnesses themselves.

So, I'm holding up my punchpass for today. It's my wee little white flag that says, "SEE THE PUNCHPASS, CHRONIC ILLNESSES? OFF. LIMIIIITS." followed by a menagerie of colorful language. Maybe I will hold it up for a couple days even, I don't know. Because I'm frustrated. Because these chronic illnesses suck and I'm pissed at them. I'm pissed I have a new one added to my list that I have to worry about. I'm pissed because I'm stuck and I don't feel well and fighting all the time is exhausting. So, yes, I'm gonna go over here and grumble and bitch for a while, shake off the chips on my shoulders, and then at some point I'm sure -- I'm not that concerned about it -- get back up and kick some more ass.

Because that's just what we do. That's just how we're made. Especially when we've given ourselves permission to feel what we need to feel about it.

Chronic Trading

You know, for the most part, I'm a fairly positive person. There is so much to look forward to and so many things to be happy about and excited for... somedays it's almost difficult not to be positive.

But then there are days where things catch up to me.

Today is one of those days.

I am fully aware how incredibly, insanely, ridiculously blessed I am. But it's just-- I want to do so much and it is so difficult for me to not be able to.

I have always struggled with limitations, though. The entirety of an eating disorder is ignoring limitations. I pushed myself too hard for too long in the most unhealthy ways and now, dysautonomia has forced me to respect my limitations. Because if I push myself too hard or too long, even just a little bit, I am immediately sick and bed-ridden for days. Sometimes, weeks. Hell, when I was really sick, overdoing it had me out of commission for months.

After a long, relaxing, beautiful summer, I'm back at work. And I love my job. But, working full time now means all that "energy" I had to do things I wanted to do, like write and go on runs with my dog and watch my husband play hockey, is gone. Now, it is reserved only for my 8 hour work day (and I can barely make it through that). I get home and I'm too exhausted to take my dog for a walk. I am too tired to even think about writing or editing or typing up a blog post. All I can do is sit on the couch and think about all the things I want to do but can't.

It must be so damn awesome to go to work and then come home and have enough (any!) energy stored over to make dinner or read a book or hang out with your family. To get to do all the things you are passionate about doing, and to do them, rather than having to pick and choose which ones you can manage. Not knowing when, or if, you'll get to the other things you love any time soon.

It wasn't long ago that I couldn't even get up and move around my house, let alone hold down a job, though. And that is something that is never far from my mind. And oh my God I am SO grateful that I am able to do what I'm doing now. I realize my health and situation and everything are things other people, who are in far worse situations, would envy. I get that. I do.

But some days it's like I just have to acknowledge it. That instead of keepin-on keepin on, instead of drowning in positivity and unicorn dust and bunny farts, that have to accept that the whole situation can be pretty shitty.  That it is really hard to have so many things I love and so many people I love and to not be able to throw myself into all of them as much as I want to. That somedays, like today, it is heart-breaking to have a chronic illness where you have trade parts of your life in for another.