Memory Issues

by freya – 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

I was in my early 50s when I caught Covid-19. Before my infection in May 2022, I was very active. I walked every day, swam once a week and cycled a couple of times a month. As well, I worked 30 hours a week on my PhD in history and ran a busy household. This involved looking after two tamariki | children and attending all their sports games and school functions. I loved socialising with friends, too.

I regularly forget words or threads of conversation, lose my train of thought and suffer memory blackouts. The essentials of everyday life, such as turning off the hob and picking up my children from school, also disappear.

Long Covid destroyed my life and left me mostly housebound. My intense cognitive issues meant I had to suspend my PhD and stop working. This has created huge financial pressure, as I am a single parent and finances are now very tight.

– Female, Pākehā, Tāmaki Makaurau/Auckland

<em>Out of Reach by Tracey Thorp<em>

A brief summary of Memory Issues in Long Covid

Covid-19 can trigger cognitive problems that extend far beyond the initial infection. Symptoms (which are collectively referred to as ‘brain fog’) include dizziness, concentration issues, headaches, fatigue and memory problems.

Alarmingly, the Washington University School of Medicine found that people infected with Covid-19 were 77% more likely to develop memory problems than the uninfected. Cognitive problems can arise even after a mild infection. This is affecting millions of people worldwide and having a massive impact on workforces. Ziyad Al-Aly, MD, a clinical epidemiologist, stressed, “The virus is not always as benign as some people think it is.”

In my experience

Kowheori Roa | Long Covid survivors often joke about their memory issues as a coping mechanism – it’s better to laugh than cry, right?

Some things we forget are funny: like the time I turned the oven on, prepared the roast vegetables and set the timer, but came back an hour later to find I’d forgotten to put the vegetables in the oven. But some of them are also frightening and/or downright dangerous, particularly for single-parent or solo households. There’s no-one else to notice you forget to turn off the gas stove-top after cooking!

Here are some examples of my memory issues:

1. Two months post-Covid, I was driving to my local shops, when out of nowhere I ‘forgot’ where I was. I’d driven this route for the past 20 years, but the street was suddenly unknown to me. The first time it happened, I was frightened – I didn’t know if my memory would come back. After that, I was too scared to drive for a few months.

2. I regularly forget the names of my tamariki | children, where I am, what I’m doing, appointments and medications. When I make a list of things, I either lose the list, forget to check the list or forget I created a list!

3. Nine months later, my memory and other cognitive issues still haven’t improved enough for me to return to my PhD research. By the time I get to the last line of a paragraph, I’ve forgotten the first lines, so can’t comprehend the meaning. I forget what argument I’m trying to make, which makes writing a thesis too challenging.

With time and LOTS of rest, I am slowly improving and regaining function. But my memory issues still worsen whenever I get tired from overdoing it mentally (and still occasionally if I overdo it physically).

What others say Long Covid memory issues are like

Most Long Covid survivors with memory issues struggle with work or study.

“My ability to do my job has gone. Trying to concentrate and remember how to do tasks that I have done for many years is now difficult, and I’m constantly making mistakes.” – Mac

“How was I going to remember a semester’s worth of work if I couldn’t even remember the names of my children?” – Michelle, who had to pull out of her degree

“I had to quit my job as I had nothing in my brain. All my training, years and years of recall have gone.” – Daisy

Memory loss is emotionally distressing. After suffering a memory blackout and ‘losing an afternoon’, Ally worried she was “losing my mind”. Fleur was ‘shocked’ and saddened to learn “a family friend had died, even though I had been told he died months ago. I felt so lost and disengaged from reality.” Mary says her memory lapses “seem like the dementia my mum had, and that’s terrifying”.

Joanne tries “to minimise just how distressing it is to not feel cognitively sharp. On good days you would need to know me really well to notice a problem, but on bad days I don’t go out.”

Another survivor found it upsetting to suddenly be “unreliable – I’ve always done what I say I will, but now… I won’t remember. I live in fear of forgetting an important event and insist everything is written on the calendar where I can look at it, sometimes multiple times a day.” A common cause of distress is the fear that people will never get their full function back.

The best advice I received

  • Research now shows Covid-19 causes persistent brain inflammation, which is why those with Long Covid suffer cognitive problems. Please realise there are valid reasons for your symptoms and you are not imagining it.
  • Currently, the most effective treatment is rest combined with time.

What I and others have tried

These memory-issue ‘cures’ (recovery tips) and ‘crutches’ (life hacks for a Long Covid memory) have served us well.

  • Rest your brain as much as possible, and have regular naps/lie-downs/quiet times. If you overdo it physically, your brain and memory will also pay the price. So it is essential to rest both physically and mentally.

  • Get enough moe | sleep.

  • Eat a healthy diet. Avoid sugar and alcohol. Some Long Covid survivors find that a no-gluten and/or a low-histamine diet helps their physical and cognitive functioning. Others swear by nutrition drinks for body and brain.

  • Some have found that vitamins improve their symptoms, so it’s worth getting your GP to order bloodwork. If you are within a normal range but at the low end of the scale, it’s worth a try. The most helpful vitamins seem to be C, D (sit in the sun in a skin-safe manner for 5–10 minutes a day), the Bs and iron.

The more cognitive/brain work you do, the worse your memory becomes. So, whenever possible:

  • Take brain breaks from screens, reading, writing, conversations, anything requiring cognitive effort.

  • Delegate cognitive tasks. Can someone else in your household do the shopping list, write that email to your kid’s school?

  • Set your expectations low: it’s better to finish one easy item on a to-do list than have a cognitive crash because you tried to do too much.

  • Write everything down, in a paper diary, on Post-it notes, your phone, a noticeboard in the kitchen. Whatever works for you.

  • Join the NZ Long Covid support group. There you’ll find practical and emotional tautoko | support. We discuss how to deal with GPs, manage symptoms, what tests to ask for, treatment tips and success stories. And you’re welcome to simply vent if you’re having a bad day.

How others can help

Please believe us!

Many of us are traumatised by seeing GPs and other medical professionals who haven’t read the research on Long Covid. Please don’t traumatise us further by not believing we have Long Covid.

Be patient when we forget words/tasks/our children’s names/appointments – and if you remember, remind us if we forget tasks/appointments/where we are.

If you need us to remember something, put it in writing as well as reminding us verbally. Check if email, text, noticeboard in the kitchen, Post-it notes or another method works best for us.

Don’t interrupt when we’re talking. Not only will we forget what we were going to say, but the extra cognitive load overwhelms us.

Practical āwhina | help, such as bringing in dry washing or doing dishes, is indescribably helpful. Cognitive help is extra precious. Can you help write a letter to WINZ or our employer? Type up a summary of our symptoms for a specialist appointment? Make a phone call that we now find too confusing to cope with?

Clinical information

There are a few theories about why Covid-19 causes memory issues:

Immune response: Researchers know that brain inflammation causes brain dysfunction. For some people, their immune system may overreact to the initial infection, which causes inflammation of the brain and results in memory issues.

Sleep disturbances: Long Covid sleep disorders may interfere with memory consolidation, because they upset moe | sleep cycles.

Neurovascular coupling disruption/dysfunction: Covid-19 interferes with the regular distribution of nutrients and oxygen within the brain. This can mean the brain fails to function properly because it isn’t getting the resources it needs. This is called NVC dysfunction.

How my Memory Issues progressed

6 weeks post-Covid: Bedridden. Reading, watching TV, holding a conversation or listening to music are impossible as they give me a headache and cause severe fatigue. I have constant memory issues. I forget the day of the week, my children’s names, to buy food for my family, my online medical appointments, to turn off gas stovetop. When I was finally well enough to get outside, restoring my vitamin D levels gave me my first (small) boost in brain and memory function.

2–4 months post-Covid: Housebound. I can watch some TV, as long as it isn’t subtitled or in a foreign language. I can read basic books for short periods as long as I take lots of brain breaks. Everyday things like my children’s names still slip my mind. Memory issues are worse when I’m tired or I overdo it.

5–6 months: I can drive five minutes return, locally, 1–2 times a week. I can read fiction and watch TV, but still get headaches reading academic texts. Writing is still a struggle and listening to music still overloads my brain.

7–9 months: I can walk a couple of houses down the road and back. It’s a real milestone: physical effort and cognitive effort are no longer linked (most of the time!). This is fantastic news, as when I have a physical crash, it no longer affects me cognitively. I can read and write at around a high-school level, but not at an academic level – so I cannot restart my PhD. Major executive functioning and comprehension issues remain. At nine months, I no longer ‘forget’ where I am, but still forget where I’m going.

Top 5 recovery tips

  1. Whakatā | Rest both your brain AND your body.
  2. Avoid mental and physical effort as much as possible. If this is impossible, then reduce your cognitive and physical load as much as possible and have…
  3. Brain breaks: break up cognitive tasks into smaller chunks and take rest periods in-between. Naps are your friend!
  4. Vitamins: a small group of people get blood tests within the normal range but specific vitamins/minerals might be borderline. Sometimes they improve after taking supplements for those that were borderline.
  5. Rest: it’s worth saying twice. This, in conjunction with time, is the most effective treatment so far!

On a positive note, most people with Long Covid memory and cognitive issues do improve, and many seem to fully recover. It’s just that sometimes progress is so slow, you don’t notice it until months later!

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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