• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

memory loss and other cognitive issues in daily life

Messages
16
Hey everyone,

Over the last 6 months, I've been experiencing a progression of my cognitive problems.
It gets me really insecure and creates tons of fear as well.
See here some of my examples:

1) Memory: Watching a serie on tv a few months ago, seeing it again, but not remembering what happened while my girlfriend still remembers it all (makes me feel a bit stupid)
2) Memory: Saying things I'm excited about multiple times forgetting that I've said this a few times already, so people tend to reply, yeah we know you told this already like 10 times
3) Cognitive Understanding: Not really being able to connect to dots in an argument where I don't seem to understand why e.g. my girlfriend acts in a certain way. For her it all seems clear, but for me I don't connect the dots as good as I used to.
4) Black out: When I'm doing something, e.g. talking to someone in a shop or playing a game of chess (which is super exhausting already), I can see what's happening, but I lose track of what I'm doing and I just experience like a 10-30seconds moment that my brain feels dead and not able to think.

Does anyone out here recognize these situations and what's your way of dealing with it in daily life?

Thanks,

Hugo
 

helen1

Senior Member
Messages
1,033
Location
Canada
You've laid that out really clearly, @hugoalexander. From what I've read, lots of members experience exactly these symptoms. I have that tv series one where all I know is I really liked it but can't remember anything about it.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
I can relate to all of those @hugoalexander. I could add a few more too.

With regard to practical compensations for the cognitive dysfunction, I have found some ways to help but not completely overcome its limitations and consequences.
These include:
lists
alarms
not attempting important things when function is lower
pacing myself in order to retain as much cognitive function as possible
training my family about things that are helpful/not helpful for my ability to communicate

With regard to hope and fear, it is frightening to see our loss of function. Unlike a person with Dementia we can see our decline. I have come to a point of accepting what is and trying to work around it as much as possible. The fact that it fluctuates somewhat and that on a reasonable day my cognitive function is higher gives me hope that the damage is not something permanent and progressive but reversible and maybe one day treatable.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
It's not infrequent for me to be reading a novel or watching a vid and realize I've already seen/read it. There might be a single scene that I remember having seen before, but the rest is pretty fresh. Connecting-the-dots was easy and enjoyable to me in my past life. Now, thinking is hard work. I've learned to live with these deficits.
 

belize44

Senior Member
Messages
1,662
You've laid that out really clearly, @hugoalexander. From what I've read, lots of members experience exactly these symptoms. I have that tv series one where all I know is I really liked it but can't remember anything about it.
@helen1I just tried to reply to your post, and after liking it I mistakenly "un-liked it" and then had to "like"it again while trying to hit reply. Anyway, I find that I have actually started to see a positive side to forgetting about a series on television that I saw before, because it is all new again!:cat: But it is frustrating to forget what has happened while still in the middle of the series.:rolleyes:
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I have the same problem with seeing the same TV show multiple times, and only remembering only small bits about it, and always waiting for the end each time, because I can't remember how it all ended.

One thing I noticed right away when I became sick was that I couldn't follow a TV plot, and still can't, even though I get multiple chances at it!

I have verbal blackouts, so when I see my doctor I write down everything in detail that I want to discuss so when brain is really fried, my thoughts are all on paper. I couldn't have a productive visit otherwise. It also keeps me focused on why I'm there, so I don't go off on tangents that have nothing to do with why I'm there.