The time MS stole my memory

2021 has been a year of many ups and a few downs.

Earlier this year, a four-legged, now almost 10-month-old, whippet puppy arrived on my doorstep. Eight months later, he has had an overall positive influence on my life and that can only be good news! He might have also contributed to some facial pain affairs, more fatigue and other symptoms, though as I sit here, I struggle to remember which.

Speaking of memory, that has been having its own set of fluctuations over the year. Imagine watching actress Kate Winslet more times than you can count. Seeing her in movies and TV series, like her show ‘Mare of Easttown’, which I binge-watched about three months ago. Remember Titanic? Yes, Leo, Rose, sinking ship, all that. Kate Winslet was in that too, and I have seen its dozens of times. But, when I sat down with Oisín to watch a film called Ammonite, I spent the first 90 minutes thinking, ‘That girl from- what’s that series again? That girl is great in this film!’

After 90 minutes had past, unable to continue watching whilst my memory was still failing to co-operate, I clicked pause and it suddenly hit me, ‘’But… wait! What!? Who? Kate Winslet?! Now, Willeke, even for you, this hole in your memory is off the charts. You love Winslet, you usually recognize her voice before you even see her, but now it has taken you 90 minutes to realise this is Kate Winslet? Really?!’’

I spent the second half of the film replaying the shock I felt when it first dawned on me. How did I not remember one of my favourite actresses? For an hour and a half?!

Cognition (s)kills

This incident fits into the cognitive kills (not skills) framework, which illustrates cognitive issues as a symptom of MS that can sadly have the potential to be life threatening. The first incident that set off alarm bells was not remembering I was my brother’s witness at his wedding.

Ouch. I know.

Shortly after this, I had my first appointment with a neuropsychologist, who explained the workings of MS and its possible impact on the memory. I told him that, amongst other things, I forget to do things, which he described as a retrospective memory issue. An issue where people, instead, just assume you are too lazy to do what you’d say you’d do.

This latest episode was different though, I call it the blip of the year, but it could, of course, just be another minor thing in the grand scheme of MS.

What I failed to do was to not overreact or think the absolute worst. Sure, it is a warning, a sign to do even more brain training, eat even more oily fish, rest more and look after myself better. So far, I’ve been addicted to the daily crosswords by the New York Times (which get more difficult across the week) and love Scrabble, ‘Words With Friends’ and ‘Word Feud’. However, I must think of other ways to stretch my mind.

Having been there myself, I am all too aware that some people say, “Well if you can’t remember, it is either because it’s not true” (read: you are lying), “or you are just confabulating” (you are not lying, your mind is playing games with you. Even so, you should’ve remembered).

I tell people that, sometimes, I have issues remembering what really happened until I am given a cue. Imagine what I’d be like if I had to remember lies, too! With all my smartphone reminders, colorful sticky notes on every wall, laptop reminders and my mum being my overseas personal assistant, I’ve gone deaf to reminders.

It’s important to know that, whilst MS and cognitive symptoms might treat your mind like a punch bag, it will rarely lead to permanent memory loss. There are lots of ways to work around it, and there is always support available in community groups, as well as your medical team.

After 17+ years with MS and an uncountable amount of ‘Sorry, I really forgot, please know that I would not do this on purpose’, I have now told myself, unless warranted by circumstance, enough with the apologies. If my memory takes some time off, I say a brief sorry and move on.

MS is, and will always be, a wondrous world of seeing things from a different perspective, and I hope this article will help you feel less alone if your memory is playing games with your past, present and future!

Memory loss can be a result of cog fog, cognitive symptoms experienced by many people living with MS. Learn more about the cognitive symptoms of MS, and how to track them, here.

References:

What is confabulation? - VeryWell Mind

The Link Between Multiple Sclerosis and Memory Loss – Healthline

Recommendations for cognitive screening and management in multiple sclerosis care - U.S. National Institutes of Health's National Library of Medicine