Blog, Self Discovery

Fatigue and Memory

Fatigue and Memory. 

CFS/ME is  weird condition to have. A list of symptoms as long as my arm (and then some) goes without saying, but the one I find to be particularly disturbing is my lack of memory.

I can remember most things. Information for uni. Things I did in the past. Many embarrassing incidents from 20 years ago. The barcode from a bag of mixed fruit when I used to work in a health shop. The entire lyrics to The Travelling Wilbury’s Tweeter and the Monkey Man.

But for the life of me I can’t remember what I did this week. Or last week. Or yesterday. Or even this morning.

It creates a sort of panic, when talking to people. Inevitably they’ll ask what I’ve been up to – and I can never answer. I’ve spent frantic minutes before they turn up trying to list things in my mind so I’ll have something ready to say when they ask – only to forget again minutes later. Not that I get up to much, these days – but it’d be nice to remember the small things I have managed to bimble through recently.

I really hate it. I always feel like a conversation stopper – I don’t want to explain that I just can’t remember. It feels like defeat, like failure. During conversation flow, I don’t want to say ‘well, just give me half an hour whilst I write it all down, look at my notes, and try and fill in the gaps, then I’ll get back to you’. So instead I panic and look to my husband to fill me in, dread in my stomach, my memory a grey blank. That pause that’s just too long, whilst I try and think of something, anything.

I’ve started practising before zoom calls. What have I done this week. What have I done this week. What have I done this week. I think I’ve got it in my mind – but then I’ll forget again.

Not to mention forgetting just words in general. Things like ‘light’, ‘curtains’, ‘door’. Instead I flail in the general direction of the doorway whilst attempting to describe a ‘rectangular thing that’s made of wood and goes in a frame and you walk through it’. I scare myself sometimes.

I have this condition, and will have it for goodness knows how long, maybe forever. The thing that is still hard, half a decade later, is admitting it. I can’t admit it to myself, most days, let alone other people. There are very few people in my real life that know about it. So I keep pushing through, making excuses, never articulating the real reason I have no idea about what I’ve done during the last few days to weeks. But not only do I wish I could be off doing exciting things every day, I can’t remember the more gentle, slower things I’ve done instead.

Would it be so hard, when someone asks what I’ve been up to, to just be straight with them? To say sorry, I have memory problems, I can’t really tell you right now, but I’ll be able to after I’ve had a while to myself to think about it?

I started writing down what I’d done, but then even forgot to continue doing that! Maybe laughter is the best medicine with something like this. It helps me get past that initial dread and feeling of abject failure, tinged with a little panic and fear.

So, a solution, then. I will write things down, and I will try my best to remember to keep doing so, and I will take those notes with me. Any suggestions are very much welcome. Do you struggle with memory or word-finding too? Have you any tips that help?


Resources:

ME Association

NHS CFS/ME

Action for M.E.

Stickman Communications Short-term memory card (I love their keyring cards and have a few myself)

ME Association Cognitive Dysfunction leaflet & information

 

 

 

 

 

 

10 thoughts on “Fatigue and Memory

  1. Could you use your phone to take pictures of what you see / do? It could allow you to soften the demand of the question with pictures of recent activities.

  2. Talking in broader terms about things you do regularly, could give you some go-to answers; then you can circle back the conversation once the details come back to you. Such as, reading history, deep cleaning the kitchen, zooming with family, watching crime shows on Netflix. Maybe try that? 🙂

  3. While I don’t suffer from a condition (I am still at uni) I also have problems finding words and describing things I did. I was really worried until I read a blog post (unfortunately I don’t remember where) where they talked about the fact that it is actually proven that times that are very similar bleed together in our minds and that therefore even if no vacations are planned you should try to schedule special memorable outings during times when you are of work. This will in a way “stretch” the time. Additionally I also started writing into a 5 minuite Journal and started writing summaries of each month at the end of the month as well as a yearly summary.

    1. This has made me feel so much better Kiki! I’m so interested to find out about this. Thinking about it, I really feel it’s got worse over the last few months, where every day seems to run into each other… I’ll try and find something ‘different’ to do occasionally andhopefully that’ll start to break it up.
      I’ve been thinking of trying a journal, you’ve given me a incentive so will get that on the go too! 🙂

  4. Kiki makes a great point, the branch of psychology referring to cognitive processing – whereby multiple repetitive actions, appear to make time pass quicker and makes it harder to recall. It’s why time passes slower for children. They’re doing a lot more that is new and stimulating their brain. The brain’s attention wanes, when there’s a lot that is repetitive and familiar. By adding in different and unfamiliar activities across the year, time slows down and the brain pays closer attention so memory recall is better. Its a fascinating topic! Here’s a study on it you may like: https://link.springer.com/content/pdf/10.3758/BF03199347.pdf 🙂

    1. This is so interesting! I’ve downloaded the paper thank you! I’ll have a look into it more, it seems to make sense… Seems like great motivation to look for some more interesting things to do! 🙂

  5. I have no ideas to help, I too have the same conditions, as well as its’ sister Fibromyalgia. I have just read your description of a door to my husband as it is so accurate to what I do! It frustrates me that I cannot remember normal words, and I find when I am talking my brain substitutes a wrong word in a sentence and I don’t notice, until pointed out and then I can remember the sentence and pick out the wrong word – cringe! I regularly mix up peoples names, that I know well (embarrassing) but they all know my problem so are very forgiving. I do find it is worse when I am tired. Regular rest and pacing does help to stay stable I find (also gentle yoga)

    1. I feel that frustration Deb – yes I think mine gets worse when tired too. The amount of times I have to pause and rack my brain attempting to remember what a thing is called!
      Yoga sounds good – I’ve tried a bit but never stuck with it yet… how often do you practice?
      And oh yes! The wrong words! 🤦🙃 I’ve been catching myself recently and being like ‘wait what did I just call that?!’

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