sessy26 05/05/17
Last reply 7 months ago
Memory and family

Hey folks new here! I was wondering if anyone else has had the experience of family and friends telling them they don’t have any difficulties with their memory, when you clearly know you do? I find that my husband will admit it in a joking way but when I am genuinely upset by it he says I don’t have memory issues. This is a common pattern with other people too. I feel like they are metaphorically patting me on the head and saying there there, but not actually listening or validating me, which in turn makes the forgetting more frustrating! I have to do lists to help but I forget what I want to put on them, things like bills and ‘life admin’ stuff I need to be reminded a few times before I remember to do it, occasionally I forget my words (and English was always my thing!) and sometimes I can’t remember if I’ve taken my pills or not. To me I notice a decline and it’s not a massive problem but at times it frustrates me. Would be nice to hear if anyone else has had this experience with family and friends as it is driving me up the wall somewhat! Thanks ๐Ÿ™‚ x

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red-suzuki
1 year ago

Oh yeah @sessy26 Just the same….have to keep notepads handy for remembering things to do in day or things to get or use fridge wipe boards to write things down…..mainly for taking pills….its the only way I stand any chance of remembering what I’m doing….erm….. it might be my age as well๐Ÿ˜†. Avoiding to much having to avoid deep & meaningfull chats….if I can, which is not possible sometimes…….I feel your frustration. having said that….Realllllllllly Hope day good for you. Red


stumbler
1 year ago

Hi @sessy26 and welcome.

MS is one of the “invisible” conditions, because we look so well!

There is this booklet, produced by the MS Trust :-

https://support.mstrust.org.uk/file/a-short-guide-to-understanding-my-ms.pdf ,

which contains a paragraph :-

“Sometimes MS can slow down the thinking process, known as cognition. It may be harder to remember the right word or where something has been put. MS can reduce concentration and the ability to think through a complex task. Reducing distractions, like turning off the TV or going to a quiet room, can really help. Also, giving someone more time, and not putting pressure on them, can make a huge difference.”

The booklet is available in hard copy in the UK from https://support.mstrust.org.uk/shop . You’ll find it under the section, “Newly Diagnosed”.

If your family see the problem, written down in black and white, they may understand it………


merfield
1 year ago

I call my iPad my life support system as without it I’d fall apart, and so would my partner. His memory is worse than mine and he hasn’t got MS. Every little thing has to be written in it and even then I can forget. To keep the cells going I’m trying to learn Spanish….struggling to learn is the truth. My family is small and my daughter doesn’t comment much except on a visit to the neurologist she told him I had short term memory loss. Don’t get frustrated with friends and family, just tell them YOU know how YOU feel and be firm. I avoid gluten as it makes me itch; when friends questioned my reason, I said firmly that ‘I’m the one who itches !!!!” In other words, back off!! You know yourself best!


beccamc99
1 year ago

I have definitely had cognitive problems- I notice it when I’m really tired particularly and when I last had a relapse it was really obvious to me. But it’s only obvious to me and when I’ve mentioned it to friends etc they all do the usual. ‘Oh I forget things too’ ‘that’s just getting old!’ etc. I think most people don’t get it but if they know anything about MS then I do think they’ll just be trying to make you feel less alone and stop you worrying about it. Frustrating yes!


potter
1 year ago

Do you have a office area or desk? I am not saying this is the best way to remember something, I think it might be a good way to get people to notice that you need help in the the memory department. Start plastering post-it-notes in your area, get the area pretty well covered so people (husband) can’t miss it. Maybe you will get some help. Potter


sessy26
1 year ago

Thanks guys for all your replies it feels good just to know that it’s not just me as sometimes you end out feeling like you’re a big hypochondriac!

Yeah I totally get the ‘I forget things too’ and the immortal ‘I’m tired too’! Most times I don’t care but occasionally it’s like rubbing salt in a wound.

Potter I like your thinking. I am starting to point out to them oh there’s me forgetting again when you can remember it etc etc. I’m sure they are trying to protect me but even when I say look this is not helpful i want to be listened to it doesn’t seem to work on them!

Good to have fellow MSers around ๐Ÿ™‚ x


celan2go
7 months ago

Ah, cognitive issues. Mine have started with the las t two years or so. (I was diagnosed in 2001, and had a flare up in 2004, but it’s been in remission since 2004)
What is most frustrating for me is I can no longer read (formerly a favorite activity), write poetry (which I’ve been doing since I was in high school and I’m now 61. My first full-length collection of poetry will be out by year’s end. (I also have a Master of Fine Art in Writing), can’t paint anymore (something I started about 15 years ago or so).
The loss of all my creative outlets, which were my life’s blood and work, is very annoying. Likewise I can’t watch movies or TV shows that are too complicated.
I’d been pretty symptom free until the last couple of years. Ah, so it goes. Thanks for being here, al of you. I’m finally after nearly 15 years of having MS reaching out to others with MS.
I hope everyone stays healthy.


stumbler
7 months ago

@celan2go , don’t let go of your artistic qualities.

You can get audio books, where you just have to listen. You could have the physical book or a kindle version, to follow the words, as this may help.

Your poetry and writing can be assisted by technology, by using voice control on a computer/laptop.

You could also try painting directly onto a computer screen using a graphics tablet. That could be another string to your bow. ๐Ÿ˜‰


potter
7 months ago

You can paint with a brush in your mouth. I recently went to a estate sale of a woman who got hit by a car 15 years ago. She and her daughter were bicycling and a driver plowed into them. Her daughter died and she lost her arm and legs. One of her therapist decided that she should give painting a try even though she had no art background. She painted beautiful still life’s and landscapes, I have a degree in art and don’t give compliments lightly. I still work in my studio everyday, I wasn’t going to let MS take that away from me. I can’t throw very well any more so I work in slab and coil most of the time. I like to work with ancient designs so slab and coil suits works well. Creating art is a great stress reliever, I go work in my studio and time flies away. I may be tired but happy. Potter

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