Some people, myself included, have been sick since the start of the pandemic with symptoms of fatigue, breathlessness, weakness, rashes, fevers and heart palpitations. These are talked about A LOT by researchers and the media. However one of the most common, and troubling, symptom among long-haulers is “Brain Fog”.
Much like Long Covid, brain fog is a colloquial name for cognitive dysfunction - confusion, trouble focusing, loss of memory or slow recall.
During the first few months of my acute Covid-19 infection I can’t remember (!) any concerns with my brain function, or maybe my concerns with my breathlessness, dizziness, chest pain and fatigue were all consuming. Life with acute Covid-19, was physically exhausting, so I contributed to family life however I could. A little meal prep here, a washing load there.
As the acute infection started to settle I started to notice the subtle things more.
Like name finding for everyday objects - “shall I peel some pointy orange things?”
Not recalling conversations from moments ago - “sorry did you ask me that already?”
Everything important needed to be written down on notes for me. Ever seen the film Memento? - except swap tattoos for post-its!!
I left the front door wide open after letting the dog out at night. I left cold toast in the toaster, swearing blind I had eaten breakfast when my partner returned from work. I left half completed tasks around the house; half emptied washing machines, wet washing on the floor but not quite on the drier, you know the sort of thing? I wasn’t able to remember to take my medications. I sometimes took them and went to take them again 5 minutes later. I bought myself a pill box - but still ended up taking the afternoon’s meds instead of the morning or even the wrong day’s meds.
I described it to my family as having a mild form of dementia but being oh so acutely aware of it.
couldn’t focus on a simple film plot, reading a book was out of the question. I managed to play a game on my iPhone that was about it, oh that and the daily government meetings which I wandered downstairs for after my afternoon nap. But only really to rage at the TV for 20 minutes and back to bed.
I was asked to read and sign a letter by the Long Covid Doctors UK group to send to the BMJ - I couldn’t get past the first line without all the words jumbling around in my field of vision. I didn’t sign it as it didn’t feel safe to do so. I felt like I had a form of dyslexia.
Then there was the organisational skills. Having been a hectic mum with a hectic job I was a self confessed whizz at organising!
Suddenly an online food shop was impossible. I couldn’t choose a recipe or make a shopping list - I was completely overwhelmed! I ended up just clicking all my favourites each week and running down the freezer and hoping for the best. We coped.
If the children needed something doing they had to sit down with me and carefully take me through it. Being in a room with my family all chatting was and still is overwhelming.
I felt my character had changed. The pre Covid anxiety I used to have just seemed to vanish overnight.
I think eventually in June a King’s College study came up “The Great British Wellbeing Survey”. This was a new study to investigate how COVID-19 infection may impact our thinking. So I picked a day when I feeling my “best” and did it. Unsurprisingly my short and medium term memory was worse than 50% of the population. My ability to verbally reason (understand to interpret words in conversation) was less than 50% of the population. Obviously this was pretty scary as it confirmed my fears - my memory and reasoning were shot.
Following this in September I chanced upon a FB post by a psychiatrist with Long Covid. It mentioned “Executive Dysfunctioning” and it was a lightbulb moment for me. Post on this to follow very soon!!
So I am now almost nine months in. Things are a little bit better. My focus has improved - I can read a book, I can watch a film, I can even read a medical paper. I can concentrate for about an hour writing a blog before my brain starts screaming but normally my POTS chest pain has kicked in first anyway.
However there are still issues. I did an Instagram Live with CoronaDiary. Apart from my POTS heart racing and being incredibly short of breath I discovered that I would answer a question and then a few minutes in have to ask “sorry Monique what was the question again? Several times - hugely embarrassing for me.
I still have trouble multitasking and I am still unable to do a shopping list. I still forget to take my medications but have alarms on my phone to remind me. I am still unable to leave the house without someone checking I have a mask and my keys.
I can’t cope with more than one task or one conversation at a time. If I am writing this blog you can’t talk to me I just won’t register it. Oh and I can’t spell - I am constantly mixing words up like their and there, sew and so.
I asked my GP months ago when I was first trying to return to work for a referral to neurology or neuropsychiatry to help with my memory and executive function. He referred me to a Psychiatrist.
Just to say I told him all my concerns and his summary was “ well we know that Covid can give you anxiety and depression but as you have neither of those I can’t help you”. He referred my on to Old People’s Mental Health (OPMH) I mean WTF!!! I haven’t heard anything incidentally.
As things are progressing, albeit slowly, I am trying to reassure myself that all will be well.
However I have written my OWN referral letter and asked my GP to send it to neuropsychiatry. I feel I need assessment and help. However my MMSE ( mini mental state examination) is pretty much normal and we know how doctors are responding to normal test results…..
I feel I am a long, long way from going back to work. I mean if my short term memory is poor, and my understanding and reasoning less than average, and I am unable to focus or plan my day, I am not sure how I stand in practising medicine safely?