I'm losing the plot!: I have got used to not being... - LUPUS UK

LUPUS UK

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I'm losing the plot!

LtAngua52 profile image
11 Replies

I have got used to not being able to concentrate or focus on anything for long, the brain is just not thinking properly, and am getting used to the memory problems of not being able to remember things that I know I have always known. I am even getting used to the speech problems, trouble finding words, saying words incorrectly or even the wrong word, saying cold when I mean hot for example. But last night was a new one. I was trying to open a can of soup and for the life of me I couldn't remember how to use the can opener! I just stood there looking at it as if it was some strange alien instrument and was struggling to think of what I am supposed to do with it. Really bizarre! I will have to make sure that I only buy cans with ring pulls from now on. If I remember! :)

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LtAngua52 profile image
LtAngua52
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11 Replies
kazp profile image
kazp

Its called brain fog and trust me you are not alone in this !

Look it up on Lupus UK web site for more info.

I find ot so very frustrating I know what it is I can see it but can I get the word ??????

Yesterday was a funny one for me. I have to set an alarm when using the oven so I dont forget something is cooking. I usually set an alarm on my phone. But yesterday the alarm did not go off. Luckily I remembered I was cooking so no fires or burnt bits.

This morning I noticed that there was an alarm set on my phone. I had got the days mixed up yesterday and set the alarm for today :-)

LtAngua52 profile image
LtAngua52

oh the joys of lupus!

candyellie profile image
candyellie

Hi Kirby50,

I so sympathise with this and have found it one of the worse symptoms to come to terms with. I also struggle to find words and or say the wrong word. I forget why I have entered a room. My short term memory is the pits.....i used to delight in in learning something new now I struggle with basics. About the only thing I dont forget is to feed the dog as she is pretty persistent if she goes more than thirty minutes over her normal time. My rheum is still trying to stabalise me so I am hoping for some improvement.....crosses fingers :)

Sadly my only advice is do not throw out your can opener as by the time you remember to buy ring pulls, you will probably come out from under the fog and be opening tins by the dozen.:-)

SuePlu profile image
SuePlu in reply tocandyellie

Dear Candyellie, I can completely relate to what you are saying regarding learning new things! I am wanting to learn, or actually relearn, how to crochet. I have all new beginner books, but look at them, and literally cannot remember how to do even the first step, even with looking right at he instructions. I am afraid to even start practicing on it, based on the instructions, because I just "don't get it", even looking at PICTURES of how to do it. It is beyond frustrating! In most patterns, you have to remember what you did in the previous row, and count from certain places in the pattern. I KNOW there is NO WAY I would remember the steps of this, even though they are printed right there......

SuePlu profile image
SuePlu

The timing of this post could not be MORE perfect! I am having these issues quite badly, to the point that I think my family is ready to have me committed! I have the added joy of the complete exhaustion right now, you know the ones, where you can literally fall asleep at the drop of a hat, or in my case, in the middle if a conversation.....Anyway, the forgetfulness is beyond ridiculous right now. I could accept what is going on right now if it weren't for them and their reactions to my "brain fog" right now! Does anyone have suggestions on how to deal with this part of it, the family reactions to it? It is getting scary for me!!!

candyellie profile image
candyellie

SuePlu, I have messaged you.

Oh wow. This happens to me all the time. I get lost mid-sentence. I used to be an avid reader, now I struggle to finish books or to get fully into them. I lose things ALL the time. I was trying to mark exams this week and really struggled to make sense of the mark scheme at times. I have MCTD and was not asked about any of this during my initial consultation. Should I raise this the next time - whenever that will be - I see a consultant? Thanks.

Natura profile image
Natura

I had a bad time yesterday driving in a new area. I couldn't tell which way to go onto the highway. I sort of knew I had to go South on 95, but didn't even process my husband telling me not here. I didn't process the sign said North. I was so upset with myself I started yelling at my husband to help me more. Maybe I shouldn't be driving anymore. My daughter was crying from all the yelling and I apologized, but was more upset with my not being able to drive the right way. I was a little dizzy and out in the sun and hot during the day. I think I need a therapist to help me cope with this illness, and one for my family too. My daughters are 12 and 14 and shouldn't have to experience an old, dilipated mom already. I know I shouldn't call myself that, but I feel that way. I am suppose to drive my pop up camper a couple of miles to another campground down the road this summer, and don't know if I am capable of even doing that anymore. I am so upset. We switched and my husband drove home. Thank goodness I'm a cougar, and my husband is 3 years younger than me.

LtAngua52 profile image
LtAngua52 in reply toNatura

Wish I had a younger partner! I understand about the driving as I haven't driven for about 3 years. I no longer felt confident that I could make judgements properly and felt that I couldn't see all the things that you need to see when you are driving. I thought I could be dangerous and it really scared me so I stopped. It also put me though so much stress that I was exhausted even after a short trip. It didn't stop my ex partner going on and on about it though, said he didn't want to become one of those men that always had to drive his partner around. That's just one reason why he is an ex!

Natura profile image
Natura in reply toLtAngua52

I am so sorry Kirby...you deserve better than that. What a jerk! My sister also had her husband drive on this trip. I don't know that I can give up driving. I remember my father stopping in his 60s and I was so surprised. But, he also felt his judgement was becoming a problem. I am only 51. Part of my job is picking up and dropping off my girls at school. They don't get a bus. I always thought I would be moving to the country as I got older which is where I want to live. Now, it seems, I need to be close enough to town to walk. Which I am where I live now, but not where I want to live. I am so sad about this. I totally understand the stress part. It was very stressful. I drove home once I got to an area that I knew. Have a good day Kirby...Thanks for sharing..

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