Ever played that game where you describe something without saying the name of it? I'm getting quite good at it - I often can't think of the name for things - or people - or form a group of words into a spoken sentence... I hear what people say but I can't process the words...
For me the worst part of this condition is the frustration!
The mismatch between what I think I should be able to do (used to do) and what I can do now... The mismatch between how I think I should be able to communicate (used to do) and what I can do now... Going swimming used to mean 64 lengths after a day at work and now it's 6 lengths (on a good day) after a day of rest...
There are times when I just want to scream AAAARRRRRRRRRRGGGGGGGGGGHHHHHHH!!!
Does any of this sound familiar? If so, Hello!
Written by
SammyThePurringCat
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Yes! hello to you too😁 sometimes I can laugh at myself, sometimes its so frustrating and upsetting. I can get a clear picture in my head of what I want to say but the words just run away. Then I end up kind if stuttering and feel so self conscious.I used to walk at least 4 miles everyday, then later the same day do an hours run. Now, 15 mins slow walk without stopping to rest is a good day. This is why I still do the boom and bust at times, as you put say, the need to be " who we were " and what we could achieve, compared to who we are now. Mismatch is a great word for this.
I found gradually accepting how things are now for me helps. I stopped fighting against the anger and sadness of my health. It mostly works, just some days I can join you in a mass scream.
It's like the words are hiding behind a big wall in my brain, can glimpse the edge of them but just can't grab the slippery wee suckers (being polite)🤣
Then somebody speaks and whoosh, they're gone! Voice is weak too, speaking can be such an effort. My elderly mum wears a hearing aid and I basically have to shout at her, even then the miscommunication can be pretty funny but so exhausting.
I think our poor brains are just so exhausted from lack of sleep, chronic pain etc ...
Yes! Always losing words. And the point I was trying to make. I also have these moments where I remember something I must do etc but it’s gone. I feel some days I just keep going around in circles.
I struggle with swimming now too. I do find I get into it more after first few lengths but that’s my day done. And I can’t front crawl now!
Qigong is good - I’m really enjoying that and think it’s helping with my balance and repair state.
Yes I completely understand everything you've said. It's a game everyday trying to do the things that were once simple, trying to hold a normal conversation without getting to that part where you get a brain freeze and either forget what you're saying in the first place, or not being able to find the simple word you need to say. I unfortunately lost my career to this condition and that has been the most difficult thing for me.
I now get so frustrated with no money, no life and feeling like I've had enough every single day
The better days where you think you can do more then you pay for it for days afterwards.... they are the hardest! Sitting there looking at what needs doing but not being able to do them, they are also the hardest. Some days I don't even want to be awake or wake up in the first place.
You need good friends who understand and unfortunately I've lost most of those. I have found someone special on here who gets new through, my fibro warrior sister, Dawn. No matter what, she's always there for me and I hope she knows how special and how much she's done for me. I hope you find that someone too.
My best was probably "you know that thing in the garden, with the side door and the parthenocissus quinquefolia growing up the wall? Where we keep the motorbikes?"
😂 it may be wrong to say but that literally made me laugh out loud! Weirdly its mostly the really common words I ' lose ' too, like window or pencil. But I remain solidly impressed at your remembering Latin horticultural names.
Glad it gave you a smile and a giggle - gawd knows we need it some days don't we!
I hated games so much at school that I took Latin purely to get out of them and then in my 30's got into horticulture because of my ill health - something I could do sitting down in my snug little greenhouse - this led to a gardening design course & qualifications and my nightly bedtime reading became the RHS encyclopedia 🤣 - I was so pleased that I was actually able to correctly pronounce the names and genus of the plants. Oh and my other hobby is genealogy - something that also needs a smattering of Latin when you get back to the 1600's... always said games was a waste of time 😂😁
But I really do know sometimes you just have to laugh at ourselves!Of course many words are taken from Latin. I like to deconstruct a word to find its origins. Am a bit of a lover of language.I mourn not working in our garden. A combined blow of fibromyalgia, osteoarthritis and inflammatory arthritis, with CFS thrown means my garden is a mess. That saddens me. I hope with some physio next year I can begin to work with my plants and soil again, just a bit more simplified. 🌻
I get what your saying for sure, I used too swim 3 times a week but having Cfs as well 6 lengths I was still pooped so gave it up 😕I really miss it, yes the memory fog 😂my husband has too guess sometimes what I’m trying too say xx
I totally get it and agree. Sometimes I look like I’m playing “ give us a clue” and I’m not even doing it for the person I’m speak to, it’s to help jog my own memory! So embarrassing, frustrating and also a little bit funny 🤣
I just read this and had a little smile. I have brain fog constantly. Drives me mad!But now..... It's in my dreams too. I dreamt last night that I was on holiday and someone asked me where I lived! I described the area but the name of the place was gone. Literally saw myself swimming in water looking for the name
Thank goodness it was a dream but scary at the same time
Dreams are weird and I do worry that I can't find words and do the description thing that we all do
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Hello
It's been a sort of window day
How do people cope?
ADVICE NEEDED. Coming to terms with Fibro-Life. Newly diagnosed- Long-term sufferer 🌻
Just need to talk
