Hi all, I’ve never used the forum before but felt that I really needed to today. I feel stuck in a rut. I have RRMS and was diagnosed 18 months ago. The reason for my post is I have had a struggle with my MS today. I’ve found on a couple of occasions that I have been unable to explain the things. I’ve been told twice by the people I was talking to, to “spit it out” as I was getting tongue-tied. I couldn’t think of the words I needed to use. I’ve never had this problem before. After having this embarrasment at work, I then had difficulties when I got home this evening. My husband and I are doing some decorating at the moment. We had agreed the areas that needed painting in different colours. I painted the wrong the areas in the wrong colours. Even though my husband had told me twice and I knew what had said, I seemed to instantly forget. Because of this, I got extremely upset and my husband got moody about it. I told him that I had some how got confused, but I don’t know how. How can something so simple become so difficult? I feel that my husband does not understand that the forgetfulness is and MS symptom of sorts. He disappeared out the house as he was so annoyed with me. I said I was sorry but it made no odds. I am sorry that he has to put up with my MS. I feel this evening, that he hasn’t realised that forgetfulness can be an MS thing. I have noticed over the past few years that my memory (at times) isn’t what it was. I’m only 32. I suppose I needed to come on here to get it off my chest because I’m just sat at home alone feeling rather upset and just need someone to talk to about it . Has anybody on here struggled with the right use of words, become tongue-tied or had forgetfulness? Your comments would be gratfully apperciated. Many thanks.
MS cog fog, I get it a lot and hate it! I often feel daft in company, and often in my attempts to say the correct thing, I lose the thread of the conversation. Being in company socially is hard and attending meetings at work is hard too. Even remembering that “the ping thing” is actually the microwave or " a round thingy in the kitchen cupboard" is actually a plate You’re not alone! Jools X
Thanks Jools. Nice to hear from someone who understands! I have called the microwave “the ping thing” and the remote control for the telly “the doodahwotsit”! Sometime, when I’m conducting inventories in properties in my job, it can take me ages to think of the word for the item I am looking at. Does your family understand or do they get annoyed with you?
I too suffer terribly with my memory, constantly saying things backwards and struggling to find the words at all. So you are definitely not alone. The MS society and trust do some great booklets which maybe you could show to hubby? Might make it easier for him to understand, I find mine responds well to cold hard facts! Good luck with the decorating
Thanks Laura P. Yes, booklets might be a good to show hubby. Thanks for the idea. Yes, I need good luck with the decorating!!
I doubt this will cheer you up, but I found it quite interesting.
If it’s any consolation I’m always getting my mucking words fuddled xx
Hello Anonymous, Welcome to the club, Flower! I often start a sentence, but peter out after just a couple of words with no idea where it started, nor any memory of having spoken, really. Then there’s describing “the thing with the thing on the thing to the thing over there”, and the inability to remember why I’ve got what I’ve got in my hand. Both my husb. and I used to get very frustrated, but as this has never gotten any better, I’ve learned to embrace it with a grin and a shrug and my (kindhearted) husb. finds it easier and less embarrassing for him (when it happens in public) if he laughs openly at it. It took a little while though, and other people get confused, but so what? I have a suggestion for you: when you think you’re having a day when the scatty forgetfulness is in full swing, try writing something; try writing a lengthy email - if only to yourself. See if the concentration needed to commit your thoughts to text is enough to hold it off. I’ve found that my typing fingers have become ‘verbose’ and they more than make up for my own inability to get anything coherent or cohesive out of my mouth. Good luck, girlie. If you’d seen yourself on the telly, you may have gotten some amusement from it. As there’s no magic wand with MS, amusement’s been my best bet so far…
Hello Anonymous! I too know exactly what you are talking about?? I guess for me its kind of payback for getting frustrated at my mum for forgetting things?? I am only 36 and have been diagnosed since Oct last year? I was working as a School teacher teaching juniors how to cook, a job I dearly loved. But I too was forgetting things at my job, (students names!) and also when asked during a busy class where things were I couldnt spit my words out! I would yell at the student because they were in the wrong spot where apparently I had told them to go! I also get very frustrated at home when my children all ask me something at the same time! I have to remember to take a deep breath explain to them I need a second and then speak. My husband who can never find anything will always ask where is that? where is this? my head used to spin and I could never get my words out! more so when I am under pressure! I have noticed recently he actually looks for things a lot longer or trys to figure things out for himself! (hooray! his only 39?? lol!) but you are def not alone and it is very hard and very frustrating! I also was studying part time before I was diagnosed but I kept telling my husband how hard it was as I felt my brain was full and could not possibly hold anymore information! (sorry about the no spaces my Enter button seems to have MS today too!) but try to explain to your husband what it feelis like and just try to meet at a happy medium! he may just have to repest things more often just to make sure you are understanding! good luck! and your doing an amazing job as you have reached out to ask! x
Hi Annon, As you are seeing from the responses, you are def not alone with this! I find that people close to me have got used to it and give me time, most of the time, to get out what I’m trying to say or mush around what I do say and make some kind of sense of it! That’s not as easy in a professional enviornment though unfortunatley. A friend of mine with MS has a wee tip, she keeps pen and paper with her all the time and if her “flow” gets interupted, she writes down where she was with whatever she was talking about and therefore finds it easier to go back to it, that can be helpful sometimes depending of course on the situation or memory or cog fog that is happening at the time. I find that where at all possible, not easy when working or with kids, but try to keep only one thing going on at a time, otherwise with me I just get sensory overload, everything becomes a mush and overpowering and I’m useless, multitasking is a thing of the past, very hard to accept for a working mum like me!..think I’ve gone of at a tengent there…it’s early!!!..anyway keep dipping into this forum, it’s excellent, I’ve found it a great source of advice, help and support, a bunch of fab folk!! Jools X
Thanks LouiseR, that has actually made sense and cheered me up at the same time! Thank you.
Ahhh the dreaded fog. Horrible. I forget words and instructions a lot. I would class myself as reasonably clever, but this MS malarky has put paid to that. Now, half the time,I feel like a complete idiot, and like you, get very emotional. But Ihave learned to laugh at it as well. Sometimes, my husband and I are in fits of laughter because I use the wrong word…Like Lousie said, it does come with time amd if you manage to laugh at it, it seems to make the whole thing easier to deal with. Chin up lovely, you’ll be ok xx
My 19 year old son gets really frustrated with me and swears I don’t listen to him because I forget what he has told me either 5 minutes later or the next day/week etc. As soon as he tells me again I say ‘I knew that, I just forgot!’.
The other day, he was having his usual rant about my not listening and how he wanted to come along to one of my appointments with my neuro and ask if this forgetfulness was really a symptom when a newsletter arrived from the company that make Rebif. One of the articles was about cognition and tips for handling it. I shoved it straight under his nose with a ‘Hah! See!’. I have to say he has been a little more patient with me since (well as patient as a teenager can be)
As for getting words wrong or forgetting them, my good friends have got used to finishing off my sentences or making sense of things that come out with the opposite meaning of what I intended to say. Jamie (son) just laughs at me but I don’t mind that, it is funny and at least I haven’t lost my sense of humour yet!
I have the solution…let your hubby do ALL the decorating himself!
Me again…just told my hubby about the decorating debacle and he agrees with me…let him do it himself.
poll and Mr Pollxxx
Yes agree, hate it especially when I have a very funny story to tell and get lost halfway through the story!
Thank you all of you, for your comments. I have had a good giggle over some of them and I now know I’m not alone! Take care folks. xxx
Thanks all. I’ve had a giggle over some of the posts. Made me feel less alone. Take care folks. xxx