Weird shit happens with a brain tumour. My memory has never been the best but it’s definitely gotten worse in the last five years or so.
Examples:
- About a month ago, I washed my phone in the bath. I forgot it was a phone. I don’t know what I thought I was washing. Luckily it still works.
- I forgot my name. Not gonna lie, that one freaked me out a bit. It wasn’t for very long, a couple of minutes if that, but not knowing your name messes with your head.
- I forget how to use the local bus app. And then forget how to get home. Yeah, this one happens more regularly than I like to admit and it’s usually after a day in the office. My route home isn’t easy and I need to concentrate. Turns out, sometimes I can’t. My husband has picked me up once or twice, otherwise, I can’t tell you how I got home. This happens about twice a week.
- I can never find the power cable for my laptop. It’s always in the same place, I just forget where that is.
- I buy tickets for events, tell my husband and then forget I bought them. Unless he’s put it in the calendar then I don’t remember. Most recently this happened with tickets to the Comedy Garden. The husband had put a reminder in the diary but it told us it was happening at the time it was happening.
- This also happens with meeting friends.
- I have forgotten to turn off ovens and gas hobs. Don’t tell my husband.
- I overwater plants. A colleague has stuck a Post-it note on my screen to remind me not to water them. At all.
The most common thing I forget is words. This isn’t unusual, again I’ve struggled with language since an earlier accident, but it’s getting ridiculous. It gets more ridiculous as words can be subbed for anything. Depends on how tired I am as to how ridiculous the word will be.
I’ve realised how hard it is to capture thoughts and hold them down, let alone create memories. Trying to work out what it is I’m doing in the moment can be hard. I just don’t know what’s going on half the time. Being present to the world around you is exhausting when your mind has been turned into Swiss cheese by seizures.
But what I’m not doing is making many memories. I remember the idea of something but not necessarily what happened. My memories are created from others’ stories, photos and videos.
Sometimes I think they’re there, hanging around at the back of my mind in the dark corners, shadows that pop up with tantalising familiarity but they never make themselves known.
It’s shit.
I know people with aphantasia, which fascinates me. It might be a work around for my memory ongoing. They list facts about an event rather than being able to see a thing that has happened. My memory was always so good, I could really see people, details of faces and conversations. I’d always be able to place you. Not now.
I lose my place during conversations, forget people, places and things. And it’s terrifying. Listing what happened could help me.
Managing your memory
So, coping mechanisms for having a horrible memory.
Disclaimer: this works for me, it’s not going to work for everyone. These are some suggestions on managing a challenging situation but you will probably have your own.
First things first, get a calendar. Whether it’s Google or Outlook or Apple, embrace your calendar. And use it. Start by plugging in the things you always forget like taking out the bins, walking the dog, feeding the cats, washing bed sheets, when you’re in the office, food shopping trips etc.
Photo by Alan King on Unsplash
Get granular if you need to. Put in what you’re cooking and on what day. When it’s time to clean the bathroom. When it’s time to change the bed.
Give yourself whatever you need, don’t try and do everything. It’s not going to happen.
You can also use this technique at work. I use a project management tool that details who is responsible for what, has a brief, and deadline, can add links and more. Makes my process-driven heart so happy. I also block out time to complete tasks so I know what I’m doing when and where. This invariably changes on a daily basis but at least I know what the tasks are and can move them to a better time and date.
Second, essentials have their place and they stay there. All essential items have a home. I know where I can get paracetamol or spices or scissors or string or period pads.
Third. Lists. Enough said.
Four. Talk to people to make sure you understand what is going on. And so they know you have a shit memory and can remind you about stuff.
Five. Find someone who can project manage you as necessary. This is not my husband.
Six. When you remember something, do it. Or add it to your calendar. Or tell someone else.
And this is as far as I’ve gotten. There are probably magical techniques involving bullet journals and doing yoga for hours a day but right now I’m surviving at a coping level. The above is by no means perfect but it allows me to function and get through the day. I’m productive at work and the house is somewhat clean.
Photo by Glenn Carstens-Peters on Unsplash
There was a great article, which I can’t find because I never bookmarked it, about how brain tumours can cause similar reactions to a brain injury. Your mind has to create new pathways as the old ones are eaten away. Your body is changing: hearing, sight, seizures, headaches and more as the tumours grow and take up more space. Something has to give, and often it’s your mind.
Your response takes longer because the pathways are longer; your brain is working but everything takes a little more time because the essentials have been moved. You get tired more quickly, your brain needs more food, and there is a greater impact on the quality of your responses. The tiredness causes more issues such as confusion, seizures and anxiety.
I will share the article if I find it.
I think the next post will be about the reactions I’ve experienced when brain tumours are mentioned. Goes about as well as you think…
Claire xx