Coping with Brain Fog

Since my lupus symptoms began, one of the main issues I have struggled with has been a near-constant foggy-headed feeling that seems to come and go with intensity.

In the early days, I just assumed it was because I was feeling so fatigued all the time but I’ve now realized that it is so much more than that.

"Don't you realize what you're doing?"

I recall a situation when I was still able to work where I was holding a hot cup of tea, chatting to my co-worker in the kitchen. I could see her looking at me in a rather concerned fashion, as she told me that I was holding my cup at an angle where all the contents were just about to spill out everywhere. I had no idea I was doing this and it really shocked me. I will always remember the look of concern on her face as if to say, ‘don’t you realize what you’re doing?’.

This was just the beginning for me. I have now come to realize that my brain fog seems to have different levels of severity. Today is a bad day and I feel like my head is floating up in the clouds.

What is brain fog?

Brain fog is best described as a type of cognitive dysfunction where it can affect concentration, memory, and the inability to focus. It’s often a very common feature in chronic illnesses such as lupus, multiple sclerosis, and myalgic Encephalomyelitis (M.E) to name a few.

There can be underlying causes of brain fog such as vitamin deficiency, especially vitamin b12, sleep disturbances, and anxiety - the two can go hand in hand when you also have a chronic health condition. Medications can also be a culprit.

What was I talking about...?

It did become a running joke for a long time about how scatty and forgetful I was. I think a lot of people just thought I was this terribly disorganized person, who was constantly forgetting their keys and phone all the time. I also found that I could be having a conversation with someone and I’d just suddenly forget what I was talking about mid-sentence. I used to get really embarrassed about it.

Tips I've learned along the way

I have found a few tips that have helped me to manage it over the years and the most important one for me is to write everything down on my calendar and in my phone. I will often set reminders on my phone as well.

I regularly meditate and I especially find just getting outside in the garden to do this can be helpful. I get overwhelmed really easily these days and it helps me to slow my mind down so I don’t get myself in a muddle. I tend to feel more grounded afterward.

I also try and stick to a routine. It’s not always easy, as I have a 3-year-old daughter but I tend to try and plan ahead.

Brain fog can feel scary

I've experienced that a lot of doctors don’t seem to take it seriously, but I have found it to be quite scary at times especially when it’s affecting my short-term memory. At my worst, I’ve left my keys in the front door all night and I’ve set a tea towel on fire!

Living past judgment

I don’t get so embarrassed about it these days as I just tell people it’s my lupus brain fog and move on quickly. I’ve become very adept at learning to feel less judgment from others.