Brain fog

by ms.maryderuyter – Last updated:

For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease. 

That is why we decided that all the symptoms on this website should be written by patients, for patients.  As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”. 

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too. 

About the author

After testing positive for Covid in April 2022, aged in my late 20s, my only symptom of note was crushing and overwhelming fatigue. I slept for more than a week, and found getting out of bed a significant struggle.

As time went on, my fatigue never lifted and cognitive difficulties came along. I struggled to think and focus. I’d slur my speech and lose my train of thought mid-sentence. I found ordinary tasks, such as walking down the stairs, took several minutes. It became apparent I was suffering from what many patients, and medical professionals around the globe, call ‘brain fog’.

– Takatāpui, Māori, Ōtepoti/Dunedin
“Hanging On By A Thread” by Tracey Thorp

A brief explanation of brain fog

Patients and clinicians often use the term brain fog to describe wide-ranging neurological symptoms that occur after a medical event – in this case, a Covid-19 infection.

It isn’t yet officially recognised as a medical condition. However, it’s a useful phrase that enables patients to describe what they are experiencing. Importantly, the severity and duration of brain-fog symptoms that patients experience can vary dramatically.

Someone with brain fog will have a range of neurological problems that reduce how effective their cognition is. In one study (PDF), which examined the lived experiences of patients suffering from brain fog, patients described various difficulties. Examples included problems regulating their executive function, focusing and concentrating, and issues with working memory and language processing. Notably, most participants described difficulties across all of these neurocognitive domains. They also identified problems with planning, decision-making and intellectual flexibility.

Another study identified fatigue, headaches and speech disturbances as common occurrences among those with brain fog. 

The effects of Covid-19 brain fog can significantly compromise an individual’s ability to perform routine tasks, and manage their day-to-day life as they did before catching the virus. Impaired memory and capacity to concentrate can affect information processing and decision-making, leading to further difficulties at work or school.

In my experience

My experience with brain fog has been particularly challenging in the workplace. It has certainly increased the time it takes me to complete tasks I would have finished quickly pre-Covid. It feels like there’s an unresolved impairment in my working memory. Most notably, it affects my ability to remember a list of tasks to complete, and the names of mutual friends or passing acquaintances. I also struggle to follow along as somebody recounts a short kōrero | story.

Brain fog also affects my home life. One afternoon I decided to run a bath for my daughter. I turned on the taps, went to sit down and immediately forgot about the bath. I started hearing water dripping, lumbered to the bathroom and found a pool of water at my feet. The most frustrating thing is that cleaning up this mess caused more fatigue and exacerbated my brain fog.

What I have tried

Outside of specialised support services, there are many strategies for managing and improving brain fog. Here are some I found helpful:

  • getting regular high-quality moe | sleep in sufficient durations
  • socialising with friends and whānau
  • actively working on your own mental health/taha hinengaro
  • eating a healthy and balanced diet
  • avoiding alcohol and drugs
  • engaging in cognitively stimulating activities like crosswords, puzzles or music
  • doing gentle exercise (not advised for those with Post Exertional Malaise)

I find it takes combining the right ‘inputs’ to ensure my brain fog doesn’t cause me to miss an important obligation or, worse, place myself or someone I love in harm’s way. To do so, I’ve developed a symptom management framework based upon the three core tenets of intentional self-care. I use technology to monitor how I spend my energy, and view my calendar/schedule as my friend rather than a perpetual annoyance: 

  • Self-care: practising self-care to manage and reduce brain fog symptoms involves consistently doing the basics right. So I focus on adequate hydration, eating healthy and regular meals, sleeping well, and avoiding unnecessary and triggering stress. Also, I’ve worked hard at being kind to myself. Kowheori Roa | Long Covid is not something you’d wish on anyone, and I’m proud of myself for continuing in such profoundly uncertain times. I acknowledge the emotional toll it’s taken on myself and my loved ones, but ultimately choose to frame my journey as one of bravely learning tough, valuable lessons. This has been a vital rebuttal to the negative inner dialogue that can be overwhelming at times. These small actions of self-care are the foundation from which I can fight my way back to improved health.

  • Using technology: these days, we can automate many things we need. This avoids the stress associated with the need to complete specific tasks, which can exacerbate symptoms. To ensure I make all payments related to my house, I set up automatic payments or direct debits. Getting my online grocery shopping delivered means I get the food I need without having to deal with the supermarket. (Supermarkets are highly stimulating environments, and can be a significant energy drain.) I’m enrolled in the Total Mobility Scheme and use taxis instead of trying to work out buses or parking. I wear a sunflower lanyard at airports so if I get confused, staff know I have an invisible disability and could use some kind support.
  • Scheduling is everything: planning my days, weeks and months carefully makes a massive difference to my day-to-day stress levels. I use Google Calendar to note the dates, times and locations of appointments or other commitments. I also use a simple digital platform called Todoist to keep track of my daily to-do list and monthly goals. Making an effort to plan means I spend far less time stressing about something I may have missed or forgotten. Instead, I use my calendar and lists as my roadmap into the future. It’s been remarkable to feel how much unnecessary stress has lifted. I schedule days to whakatā | rest my brain, and use the maramataka (Māori lunar calendar) to guide my activities and āwhina | help me to slow down.

How others can help

I wish more people understood how much brain fog disrupts the lives of those who live with it. They don’t realise I’m clever and a good person, but at the moment I’m too sick to think or act with as much clarity as I did before.

There’s no one thing people can say or do to alleviate the pain of Kowheori Roa | Long Covid for those suffering from it. However, knowing you have the love and support of your family and friends is vital. It also makes an enormous difference having a supportive, attentive, knowledgeable medical team. This is because we feel isolated and anxious, and need reassurance of the type only a thorough medical examination provides.  

Treating brain fog

Because there’s still no one medical intervention to treat brain fog, individuals and healthcare professionals must develop their own techniques.

Ideally, as this study (PDF) concludes, patients with post-Covid neurocognitive symptoms should have a clinician who helps them manage symptoms in their personal, social and working life.

Patients should also have access to specialist services that can address neurocognitive symptoms. These services need to be easy to navigate, and work across medical disciplines.

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

Content shared on this website is for informational purposes only. It should not be taken as a substitute for professional medical advice. Always seek the advice of a qualified healthcare professional regarding a medical condition, diagnosis or possible treatments. Long Covid Support Aotearoa is not liable for risks associated with using or acting upon the information provided on this website.

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