Do You Have Brain Fog?

With lupus, there is a condition that survivors may have, called “brain fog". It sounds cute, it’s really not. Inconvenient is the best adjective to use when describing said condition.

Coinciding with 2016 Lupus UK’s topic of the month, I chose to delve into brain fog because of how often it disrupts my day and overall thought processes.

Lupus UK informs us:

‘Brain fog’ or ‘Lupus fog’ are terms that are often used by people with lupus to explain a range of cognitive difficulties such as confusion, difficulty in articulating thoughts and memory impairment. Doctors refer to this as ‘cognitive dysfunction’ or ‘cognitive impairment (2016)’.

What this means in the everyday world is that everything I need done needs to be recorded, measured, and accounted for. It is utterly frustrating when things are not in their proper place because half the battle for me is remembering key places said item can be. Outside of this blog and my family, there isn’t anyone I’ve told about this fog that hovers around me.

That is what it seems like, a rolling series of clouds that block my way. I have to follow the white lines of the road I’m on carefully or risk being woefully lost. In the fog, there are hints, outlines of what I’m looking for. I use Inkpad, an app on my phone to record little notes to myself. I leave voice recordings, write things down on paper or leave a sticky note in my wallet. I craft a little map called routine which helps me outline where I might have strayed and gotten lost.

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You remember that cute blue fish from Finding Nemo? That’s me. I’m very in the moment and when that moment passes, it slowly rolls back into the fog. Sometimes, I’ll lose the thought immediately, as if a disappearing act was performed and what was disappeared was a name, a phone number, a birthday. Does that ever happen to you? One minute you’re excited for that thing and then you sit around the house for so long, you forget what it is? How about when you wander up the stairs, do you sometimes forget that you were there for a hairbrush and just walk back downstairs feeling stupid? Imagine that being a frequent occurrence throughout every day.

Having these clouds in my head does make me more self-conscious, especially when it comes to my relationships. When I was younger, I knew my friends' birthdays, phone numbers, star sign and address. I could afford the mental capacity to be that friend. Granted, I was never the punctual friend but to have plans constantly fall out of your head? When I berated myself, it was with the sound of an angry friend or coworker in my head. I still feel shame.

I feel shame with my partner. He doesn’t shame me but I feel it still. Little things I should know about him slip if I don’t repeat them to myself. His middle name is in my Inkpad app along with his birth year. I take photos, often of what he looks like, so I’ll remember years down the road how he actually was. Our anniversary I remember by tracing an old poetry event on my calendar we attended when he asked me out.

Now mind you, I still remember things in fine detail. When it comes to reading things, I never forget. I recall books from when I was three years old. Even though I haven’t taken Spanish in years, the language still rolls smoothly off the tongue and I can still speak it fairly well in the present tense. I remember all the generic names for drugs from my time as a pharmacy technician. I still remember choir songs from my 2007 chamber choir group. These are facts that I can recall at any time, yet still the fog pervades my short-term memory. Did I take my medicine or am I remembering yesterday night? That can be a danger when you live your life by routine. On those nights, I have to evaluate how my body feels. How do you keep track of time? Do you also fear losing yourself in daily routine? I combat this by making every day a little different than the last. I “tag” the day with an activity or accomplishment I can reflect on, either alone or with my partner.

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My body and mind remember trauma. They remember pain for the sake of avoiding it and I understand that thought process as broken as it is. The fog blocked out years of sexual abuse though I can remember certain days of it vividly. It blocked out years of emotional abuse from family members but took care to highlight the sensational bits. I wish all of my trauma would dissipate the way so many beautiful memories of mine often do. I wish the crispness of my sexual assaults, the smell of my attackers' cologne, would get out of my head. I wish I didn’t remember how their hands misappropriated my body. I wish I didn’t still think of them. Brain fog deletes selectively.

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Lupus UK goes on to say:

There are a few other potential causes of brain fog in lupus including;

Stress

Anxiety

Depression

Fatigue

Fibromyalgia

Some medications used in the treatment of lupus (such as steroids) are known to have an effect on brain function.

Living with an autoimmune disease like mine, I am subject to three out of the four of those triggers. Caring for myself causes me stress, as does outside factors such as dealing with insurance, doctors, relationships, and work. I am anxious about my health, my future with my partner, and making a realistic and pleasant life for myself down the road.

I have had my brain swell in my head, forgotten who I was, literally lost my mind because of lupus. Doctors specifically called it lupus cerebritis but I’m still not sure that’s right. A few years back, something happened, a combination of being sick and stressed, I began to lose my memory. It was something far scarier than brain fog, because whereas brain fog I knew I had forgotten something, with this condition, I didn’t even notice the things that I was actively forgetting. I would hide things, draw things, sign up for charities and events, not even aware that I had. I became paranoid, sadistic, and manic. I would stay awake for almost a full twenty-four hours, unable to sleep, jittery and hyper-focused, afraid of losing time. That period was the scariest time of my life and it took several months of familial and holistic support to get me back on track. The doctors told me straight up, it’s possible the swelling could occur again. If you’re an able-bodied person it’s hard to explain how grateful and frightened you feel when you’re on the other side of something like that.

So, cue my attempt to train my brain! It started with playing more memory focused games. My partner and I play video games together that hone this skill. It also came with his valiant efforts of teaching me how to cook. Remembering what goes together, the order in which things are prepared forces my brain to get off its figurative ass. I use social media. Surprisingly, blabbing on Facebook and keeping up with my friends’ lives helps me separate my days. I still have a routine but I acknowledge that life has to come with spontaneity. With brain fog you have to make the day your own, every single day. Right now, I’m doing focused dream-work, learning how to control my thoughts, even while I sleep. I’ve always had terrible nightmares from physical pain, trauma and old fears of abandonment. Being able to remember them, retrace what scared me, and work through that, has helped my memory and helped me to combat my night phantoms.

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My memory is not perfect and while I do work every day to hone it, I understand it might still get the best of me. Depending on my family and friends have helped me to stay grounded in the moment. As a writer, I use my craft as both a healing tool and a method of communication. People need to know that people like myself aren’t being inconsiderate when we don’t remember the little things. We want to remember. Those moments we lose are more important to us than you’ll ever know. I also focus on my core, the inner me, the spirit that is separate from the body. There are some parts of me, my resilience, my courage, my curiosity and my desire to love that are always with me. When I was losing my mind those years ago, I held onto how much I wanted to love myself and the people I cared about. I made my love a force, an energy and I kept pushing my mind to accept that feeling over and over again.

I also let myself be weak. I fought my mind until I couldn’t anymore. I had to let people take care of me. I had to put trust in others’ hands. I know that’s something that scares us all, being vulnerable. Sometimes, that’s the only way to get better. You have to be open to other ideas, open to seeking help and being helped by methods that might strike you as “weird”. When my parents took a holistic/spiritual approach to my healing, I was at the end of my rope, malleable. I let myself go and I let myself absorb what they said. I opened my spirit to the possibility that not everything about me can be measured and weighed. What is the weight of a fighting spirit? What is the span of love? How strong is the mind?

Brain fog is apart of my life, so I fought it with photos, notes and Facebook. It gets the jump on me every once in a while but I don’t berate myself, I plan for next time. Don’t berate yourself for your mess-ups. You can fail and get back up. I’m probably going to forget something in the next ten minutes but I won’t let it stop me from making important memories. The fact that I made those memories, the fact that I am apart of so many people’s recollections still means something. It means that I exist, that I will continue to exist always in some way, probably long after I’m gone. The fog can’t stop me from writing, the fog can’t stop me from dreaming, and the fog definitely can’t stop me from making meaningful connections, though I always make sure to tell folks they’ll probably have to tell me their name again after we’re done talking.

Reference

Howard, P. (2016, February 29). February's Topic of the Month-Coping with Brain Fog (Publication). Retrieved November 10, 2020, from Lupus UK website: https://www.lupusuk.org.uk/coping-with-brain-fog/