A Deeper Insight into Long COVID Brain Fog
- Brainz Magazine
- Jul 2
- 14 min read
Written by Dione Knight, Physiotherapist
Dione Knight is a dedicated physiotherapist with over 35 years of clinical experience and a unique perspective as a long-hauler recovering from Long COVID. As the founder of Long Covid Physio, she combines her expertise and lived experience to support and advocate for patients navigating the complexities of post-viral conditions.
Brain fog is a common complaint for those with Long COVID. This term, however, grossly devalues the impact cognitive issues have on the life of a "Long Hauler." Brain fog is not only disabling, but it steals your trust, your energy, and challenges your sense of self and the person you identify as. Discover some ways to help improve Long COVID brain fog.
“COVID-19 isn’t just a lung condition—some of the most severely affected patients are those with brain complications.” – Prof. Benedict Michael, University of Liverpool
What is brain fog?
Brain fog, in its simplest form, is an inability to think clearly, affecting your ability to perform daily tasks. I remember when I was pregnant, feeling like my head wasn’t as clear as usual and being a bit forgetful. However, brain fog is so much more than a lack of clarity and forgetfulness. Long COVID brain fog can turn a highly educated and competent individual into someone with the ability of a primary school child.
What does brain fog look like for a Long Hauler?
Brain fog is so much more than a simple definition tossed around flippantly by the medical fraternity, the media, and the general population. Unlike my experience with my self-limiting pregnancy brain fog, this time around, there was a permanence to the symptoms, and it goes so much deeper than a lack of clarity and absentmindedness. The brain fog I am talking about disrupts your sense of self. It plants the seeds of hopelessness, and it renders you incapable of leading the life you once knew.
Memory issues
Before contracting long COVID, I was known by all my friends for being highly organized. I knew everyone’s birthdays, addresses, and phone numbers without having to look them up. I knew what was going on in all my friends' lives and was able to see outside my own life and relate to others with ease. I could study and retain information to a university master's degree level. I could do more than one thing at once and had the ability to sit down, concentrate, and finish a task without being distracted. I could navigate technology, read an academic article, and remember its contents with ease. However, that is no more.
My memory is poor. I frequently wonder if I am developing early-onset Alzheimer’s. I spend an inordinate amount of energy on remembering things. This involves repeating things in my head until I can take action or put them in the diary to do at a later date. If by some chance I get interrupted by a family member, phone call, etc., then that task is gone. Sometimes I recall it later, sometimes not until someone else asks me if I did the task. I have endless lists I cross off and rewrite obsessively. I check and recheck to make sure I haven’t forgotten to do something and use up an inordinate amount of energy just to function.
Reduced thinking speed
The pace of thought is slowed. This not only affects your ability to get things done efficiently, but it also means participating in life is a challenge. I simply can’t process information like I used to. I frequently have to ask people I interact with to go at a slower pace and explain assumed steps. I often find I am still thinking about the first thing they said, and they are already up to step 3. It takes me three times as long to complete my work as it used to, and I am exhausted even though I have achieved very little.
It is hard to keep up with conversations socially. I find the conversation moves quickly from one thing to the next, causing me to get lost or become overwhelmed. I find the energy required to socially engage is huge. The simple act of thinking of something to say to keep the conversation flowing is so tiring. The resultant fatigue is exhausting and frequently prohibits me from finishing a task, only to then have to start all over again. When I resume, I often can’t remember where I left off. I feel like all I do is go around in circles.
Poor focus and concentration ability
I have difficulty with focus and concentration, and I frequently wonder if I now have attention deficit disorder. I look around the house some days, and I have moved from one task to the next, with nothing completed and everything in chaos. I spend my life now in last-minute speed completion, where once I was organized and left nothing to the last minute. I also find my mind wandering during conversations once my tolerance is exceeded. Writing this piece has taken me 7 months. When I have to concentrate for longer than 60 minutes, I become agitated and need to get up and do something else that requires no thought, comforting myself with a familiar task, or simply resting.
Difficulty learning new skills
Unfamiliar tasks and learning new tasks were difficult beyond belief in the early days of the illness. Before contracting Long COVID, I could learn anything I put my mind to. Now, it doesn’t matter how hard I try; I cannot do it. Two years ago, I paid a web designer to do my website. All I had to do was write the content, and he would make it look pretty. Doesn’t sound that hard, even to me. Still, to this day, that task is beyond my capacity. On the priority list, it is low.
Altered auditory and visual processing
I later discovered that a large part of my memory issues was related to difficulty with my brain processing visual and auditory information. In the early days, if visual and auditory information were delivered simultaneously, such as in a movie, I had no hope of remembering anything. If I watched a movie and was asked the next day anything about it, I could not tell you one thing about it, not even the title. Sometimes I could remember the theme, but other times, nothing. If I watched it again, bits would come back to me. Since having therapy, this has improved, and the other day, I noticed I could easily catch my family up on a series we were watching if one of them missed an episode.
I have also learned that when I move from one space to another, my memory is disrupted. So, if I have something to remember and move from one room to another to write it down or take action on it, I will forget what I am doing by the time I get to the other room or get distracted by something else I need to do. I find I am constantly repeating what I need to remember until I get to the piece of paper to write it down or can take action. At best, if I forget what I needed to remember, I will go back to the previous room or place I was when I started to take action to jog my memory. But usually, it is lost until something jogs my memory again. As a result, I miss appointments, pay bills late, and forget to buy presents.
Visual snow
Visual snow is the primary symptom of Visual Snow Syndrome (VSS), which is a neurological disorder caused by abnormal processing of the brain’s visual and sensory pathways. It is not an eye problem. For me, visual snow was like I had not cleaned my glasses. No matter how much I cleaned them, everything was still blurry, like I was looking through a snowstorm. Some days, the snow was present all my waking hours, and other days it was linked to cognitive fatigue. I still get the snow, but much less frequently, and it has been helped significantly by neuro-optometry and retraining my brain to process visual information again.
Reading and writing issues
In the early days of Long COVID, I “felt” dyslexic. Reading and writing were a huge challenge. I would misspell words, use the wrong words, not see words in an email or document, leave out sentences, and write sentences twice. If I read back my written work the next day, it would make no sense. I would check my work three times before it was submitted for review, only to have it come back covered in corrections, as if I had thrown it together with no regard for attention to detail. Even as recently as yesterday, my daughter had her wisdom teeth removed. I was provided with the quote some 8 weeks earlier. It told me everything I needed to do. Yet yesterday, I realized I hadn’t rung the health fund nor paid the oral surgeon’s bill. Talk about last minute; she was on the operating table when I finally paid the bill.
Visual pursuit issues
Early in my illness, I was unable to hold my gaze on one line of text in a book and follow it to the end before moving my eyes to the next line. My eyes would jump all over the place, making it not only hard to follow what was going on, but also causing me to forget what I had read in the two lines before and have to go back and re-read what I had already read. Hence, my speed of reading and comprehension were affected. I also found I did not have the stamina to read. A page or two, and I was done; all the words just turned into word salad and made no sense.
Altered visual fields
As part of my brain fog treatment, I consulted a behavioral or neuro-optometrist. As part of the assessment, my visual fields were evaluated. Not only were they smaller, but they were also different from side to side and not oriented symmetrically. This was particularly problematic when I was driving, as things, namely cars and people, would seemingly jump out of nowhere. I was constantly having to check, double-check, and triple-check before changing lanes, approaching a pedestrian crossing, etc.
Altered perception of space
When I realized I was seeing the world in 2D, that blew my mind. How could a person with two operational eyes not see things in 3D? Well, that was what was happening and still does, but to a lesser extent. My whole world had flattened. I found it difficult to judge spatial depth or locate myself in space. This was part of my memory issues too. As a result, I would run into things and trip over my own feet regularly. I also felt disoriented, like I had very mild vertigo at times. Again, through some crazy eye exercises, I have been able to restore this, and now I see the world with some depth.
Reduced reading ability
One of the most confronting moments in my Long COVID recovery journey was the day I had my reading age assessed. I think I have had two or three cries during this illness, and this day was one of them. At the optometrist, they have a machine with a reading piece on the screen. You start reading, and the machine tracks your eye movements. At the end of the piece, you are asked a couple of comprehension questions. Afterward, the optometrist showed me the results. The lines tracking my eyes went forward in 4–5-word lots, then backtracked 2–3 words, repeating this pattern for a couple of sentences. Then I would jump back a couple of sentences and reread. I remember doing this because something in the sentences before was required to make sense of what I was reading, and I had forgotten that, so I had to go back and reread the piece to make sense of it. I was told I had the reading age equivalent of an 8-year-old. To see this unfold before my eyes was confronting, to say the least. I had been experienced at reading academic papers and researching at a university level, and now I was barely capable of reading at a primary school level. I remember bursting into tears hearing this news. I knew I had some deficits, but I didn’t realize they were that bad. No wonder it was taking me so much energy to function with simple tasks and taking me 4 hours to do what would normally take me 1 hour to do my work.
Speech difficulties
I experienced both spoken language and physical speech difficulties. The spoken language issue involved using the wrong word, even though it was clear in my mind what I wanted to say. I would sometimes say a word that was similar in sound to the one I wanted, but with a very different meaning. Instead of saying “he was aggressive,” I might have said “he was aggrieved.” I would lose my train of thought mid-sentence and have to ask others to remind me of where we were up to. Sometimes, I knew what I wanted to say in my brain but was unable to connect to my mouth to say it. Other times, I was unable to find the words to express what I wanted to say. I would stumble on words, or others would fill in the word for me, or I’d be able to describe what I wanted to say, and someone else would then say the word. For example, let’s take a potato masher. I would say something like, “You know the thing you use to mash the potato.” I knew what I wanted and what I wanted to use it for, but I could not think of what it was called.
The physical speech difficulties were my biggest challenge in the early days. I lost my ability to project my voice. I spoke so softly that people could not hear me. Speaking on a phone call was exhausting and resulted in me being so short of breath that I spent hours recovering. Speaking and eating were similar. I still don’t fully understand what the issue was, however, with months of speech therapy, walking around the house sounding out S, F, Z, V, Sh, Th, and making sounds akin to a whale, among many other strange noises, my voice returned, and my breathing partway recovered.
Planning issues
My patients tell me about their difficulties with planning. This issue is not just about remembering to plan, but also about the actual difficulty in doing all the steps required to complete a task. While most of us don’t like cooking a meal at the end of a long day, if we have to, we can cognitively do the task. For Long Haulers, cooking a meal is not only beyond them physically but also cognitively.
Most of us have never thought about the steps it takes to make a meal, because planning is a skill most brains possess, even at some basic level. Cooking a meal, for example, involves many steps: deciding on what you want to eat, checking if you have the ingredients, writing a list of what you need to buy, going to the shops to buy the ingredients, and following the recipe steps to culminate in a meal ready to eat. Most people get overwhelmed at the first step, or their energy levels mean they can’t complete the task.
As part of physical rehabilitation, I do this, and I spend time working with my patients using a skill called “chunking down.” This is where you break big tasks into all their smaller parts. If it is still overwhelming, then you break it down further. What used to take you 2 steps might now take 10 or more. By breaking tasks into smaller, more manageable sizes, it saves energy both physically and cognitively and enables the person to be able to do some or all of the steps, rather than the task being all-consuming, leaving them unable to do anything. These small steps then build to become bigger steps and pave the path to recovery.
Disorientation
On a few occasions, I have become disoriented in both space and time. This doesn’t happen very often now and mostly occurs in unfamiliar environments, such as shopping centres. I remember coming down the escalator of a department store and feeling paralyzed and terrified. I could not remember the way out or see the way out. I felt like I was in a high-walled maze, going around in circles. This was a place I had been to many times in my life. Fortunately, I was, however, able to recognize that I was disoriented. I then made slow movements in a grid-like pattern until I could see something familiar, eventually finding the exit. Terrifying.
When I am disoriented in time, I can say the date or look up a date, but I don’t register how far away the date is. Recently, I kept saying the current month’s name, but it didn’t register in my brain that it was the current month. That being said, there was something that didn’t sit right with me; however, I could not work out what it was. Then, about 3-4 days later, I realized I was in that month, and everything else fell into place.
Reduced capacity for social interactions
Socializing or carrying on an intelligent conversation is almost impossible. Most of us take for granted the ability to listen, understand, and simultaneously formulate a response while interpreting incoming information to the brain and tuning out unnecessary background information like noise, lights, smells, and body discomfort. With brain fog, the pace of processing is slowed, and as such, you lose track of the conversation because it has moved on by the time you process it. Formulating a question and interjecting at a socially appropriate time is not possible, and the inability to filter unnecessary information makes for an exhausting experience. These issues make returning to work for some extremely difficult if their job involves a lot of meetings or face-to-face interactions.
What does brain fog have to do with my other symptoms?
There are many symptoms that you might not think of as being linked to "brain fog." They include:
Severe headaches
Disturbed sleep
Racing heart
Dizziness
Fatigue
Blurred vision
Sensitivity to noise
Sensitivity to light
Mood changes: anxiety, depression, feeling stuck, and unmotivated
As you will learn in upcoming articles, some of these symptoms can be associated with other conditions that occur with Long COVID, such as POTS and dysautonomia. However, both POTS and dysautonomia can affect the blood supply to the brain and cause brain fog. Sign up to be notified when my next article is out, or follow me on LinkedIn.
What does brain fog have to do with physical rehabilitation?
As a physiotherapist who works with those living with Long COVID, and someone who personally lives with the disease, I understand firsthand that brain fog has quite a bit to do with our physical capacity.
The fog is closely tied to physical exertion and cognitive exertion. Managing these is essential when building your physical tolerances for upright postures and cognitive tolerances. If you push yourself too hard, physically or mentally, your brain fog is likely to worsen, and vice versa: pushing too hard cognitively can worsen your physical capacity.
The good news is that your body gives you signals and displays signs alerting you when you are overdoing it. We have, however, mostly learned to tune out these signs or push through them. Sometimes the signs don’t show on the outside until it’s too late; however, there are things our body does that are a bit like a canary in the mine, and these signs can alert you to when you are overdoing things before you necessarily feel them.
Much of my work involves educating patients on what to monitor, pacing effectively, managing daily physical exertion, and teaching people how to safely exercise again. Everything you have learned about exercise no longer applies when it comes to PEM (post-exertional malaise) and dysautonomia, but once mastered, I have found, both personally and with my patients, that improvements in both physical capacity and brain fog occur.
You are not alone
If you have Long COVID brain fog, you are not making it up. Your brain is working differently, and that is real. Please know you are not alone, and there are things you can do to help.
Understanding
Hopefully, if you live with someone who has Long COVID brain fog, you can now understand a bit more about what brain fog might look like for them. Brain fog is not just being a bit forgetful or not thinking clearly. It is an incapacity to function cognitively to do basic tasks that others take for granted.
Looking ahead
In future articles, we will explore the causes of brain fog, how to manage it, and the importance of pacing and exercise. We will move on to other topics such as PEM, dysautonomia, and POTS, and you will learn how these all relate and what you might be able to do to help your recovery.
Want to know more?
If you want to book a consultation, please contact me to discuss your needs. To register for updates or to let me know about topics you might like covered, please click here.
Read more from Dione Knight
Dione Knight, Physiotherapist
Dione Knight is a trailblazer in physiotherapy rehabilitation for individuals living with Long COVID. After developing the condition in 2022 and facing significant physical and cognitive challenges, she integrated methods from chronic pain, fatigue and trauma care, redefining rehabilitation for this population. Her pursuit of knowledge led her to collaborate with leading researchers, blending their insights with her lived experience to innovate new approaches. Recognising the scarcity of resources, Dione founded Long Covid Physio to support, educate and empower those affected. Her mission is to provide compassionate, evidence-based care that optimises quality of life and function for individuals navigating the challenges of Long COVID.
