Wending Through Brain Fog

This is not a post with answers. I wish I had them.

Sometimes it feels like the internet works like this: Five quick fixes for brain fog! Just take this supplement and stand on your head twice daily and eat grapes two at a time and your brain will just start working properly like magic! YMMV, so don’t come calling if none of this works for you.

We get our hopes up, and then they’re dashed. I’m not going to do that here.

This is more of a “where I’ve been the past month and a half” kind of post, and a bit of an “in my shoes” or really, “in my brain,” kind of post. It’s pretty in there, if you like that thick, early morning fog that rolls over the hills, and don’t mind if it hides a moose or two that you might just walk into, or that might walk into you. That’s the tricky part, that things can sneak up on you and you don’t see them until you’re right on top of them, scrambling to respond properly before you get trampled.

I became undeniably ill in the fall of 2011, but I started having odd symptoms well before that, all the way back to 2008. I’d started having trouble with some of my joints and pain in old injuries. I put it down to repetitive strain from my yoga practice and switched to riding my bike more. Then I started to become sensitive to wool, even to shirts and sweaters I’d owned and worn for years. But I didn’t think much of it until I was really sick, and doctor after doctor ran test after test, and all of them left with me with few answers.

I’ve had several diagnoses over the years, from chronic sinus infections to IBS to candida and now Lyme disease plus co-infections. At this point I’m pretty sure that the Lyme disease and related tickborne infections––acquired the first time I lived in MN, because the tick that carries the Lyme strain I have lives only in the upper midwest––was the cause of all the others. Unfortunately, it took over a decade to find out I have it. The CDC Lyme test only checks for Borrelia burgdorferi, which ticks across the US can carry. It does not check for Borrelia mayonii. In fact, B. mayonii was only discovered in 2013. I had already been sick for a couple of years by then and had moved to Seattle––even if my doctors had read about the discovery of B. mayonii, they had no reason to think I had it. Even now, you can only be tested for B. mayonii at the Mayo Clinic, though it may show up if your doctor does a very in-depth––and expensive, not covered by insurance––tickborne panel (the latter is how I found out).

Long-term Lyme disease comes with the potential for permanent neurological and cardiovascular damage. I’ve been lucky on the cardiovascular side, as I haven’t had many symptoms there. I have been less lucky with the neurological symptoms, as I have headaches, arthritis, digestive issues that are linked to my nervous system, fatigue, brain fog, and the symptoms of fibromyalgia. Basically, I hurt all over, I’m tired, I can’t eat comfortably, I’m forgetful and easily confused, and I have a hard time focusing. Fun, right?

And that’s just the regular stuff. When things are really bad, I can have POTS symptoms––racing heart, feeling like I’m going to pass out if I stand up too fast––and exertional malaise just from sitting upright too long. I have to be careful with exercise because even a little can create fatigue for days.

Food can trigger a flair, but I keep a strict and consistent diet, so my flares usually come from over-exerting myself in some way. Sometimes it’s simply doing too much, but more often, it’s stress. Even a little bit of stress such as a bad night’s sleep or an unexpected change in direction at work can push me toward the trouble zone. Stack up several long work weeks in a row and I’m marching solidly toward collapse.

A flair can start small. An ache in my back and hips, some swelling in my sinuses. A mild headache after a mug of tea. Those last two relate to inflammation in my head, which is exactly as scary as it sounds. No one wants their brain to be inflamed. Usually on those days, my aches and pains will increase as the day progresses. And usually, I will have a degree of brain fog.

The fog can range from mild forgetfulness to losing time. Sometimes I can’t remember if I took my digestive enzymes before I started eating. Once I forgot to turn the stove off after I made breakfast. Occasionally it’s so bad that I don’t feel safe to drive––so I don’t, I never push that one. On the really bad days, I’ll move from one room to the next, take a seat, and fifteen minutes will go by before I realize I have no idea why I’m there or what I’m supposed to be doing, and how did it get so late? But then I float back into the fog, spending the day in and out, in and out, getting nothing done and then stressing that I’m falling behind.

The flares always come with a sense of overwhelm, though I suspect the overwhelm is the product and not a symptom. I’m fatigued and foggy, I just can’t do as much in a day as I’m used to doing. I need to rest, and every task takes longer than it should. So I fall behind in what I need to do. One day isn’t so bad, because I can catch up when I feel better, but a series of these days strung together and I’m in deep trouble. And the more I push to keep up, the more fatigued I become, until I wake up one morning and hurt so much it’s a struggle to get out of bed.

I know to give myself grace. This disease is not my fault. Some days I need to rest. But it can be hard to let myself fall behind and even harder to dig back out. Usually in these periods, I find I curl up into myself. I interact less. I want to be alone, because interaction is taxing, but also, I have a harder time conveying thoughts and keeping up with conversation. I struggle more with how to respond to things. And I forget––to reply to an email, that I posted on social media and people might reply to me, that I wanted to call someone. I forget to make connections.

That kind of feels like a summing up of brain fog––forgetting to make connections. Failing to remember that I went into the kitchen because it’s time to make dinner. Failing to remember that if I don’t read the mail, I could miss a bill and be late on a payment. Failing to remember that I have a task list and if I look at the list, I don’t have to remember all the tasks I need to do. Failing to remember that I can write tasks down at all.

So the fog rolls in and I pull the shutters down and curl up in the quiet, and do my best to remember to take my medications and supplements and feed my family and myself, and everything else falls to the wayside. The laundry doesn’t get folded. I don’t write. I’m slower at work. And then I come up for air and realize that the taxes aren’t done, and the task list has 50 to-dos. It’s hard not to sink into depression, to curl back in and give up.

But I don’t. I’m stubborn. I like life. I like writing and playing with my dog and cat and listening to music with my husband and taking pictures and sitting in nature and experiencing the world. I like being alive. And did I mention I’m stubborn?

I’ve worked through the last month and a half by pulling in, but also by indulging in something I can do when I’m foggy and tired: knitting. I have a sweater for my efforts that I’ll post about at some point, and I’m hoping to get the next one on the needles soon. And those taxes will be done by the time I post this, so at least that’s cleared out. This week I wrote the beginnings of two story ideas that have been simmering for a while––as foggy as it gets, my brain will only let me go so long without writing stories––and I’m hoping to dig back into my novel work-in-progress soon, this week or next. Maybe I’ll pop back in on social media, test the waters again.

I’m not rushing. I’m taking it all one thing at a time, because any kind of stress will put me right back into the soup. The sun is peaking through today, and that always gives me energy. It can take a while for the fog to burn off, to see the trees at the far end of the field. To take back what the mist has hidden. But I will. I always do.