Can anybody relate to this?

[Leenie0811]

Morning everyone,

I'm sorry if this seems like a moan but I needed to ask if anyone else has this as I feel so horribly alone when it happens. Sometimes when my symptoms flare up I get to the point where I cannot process when people are talking to me - this is a huge problem as my partner is one of those chatterboxes and if we are planning something then he has to go over it 15 times and every bit of detail. When I say planning something we could literally be going to do our food shop and its all he can talk about.

When this happens I get so mad as I don't know how many times I can repeat myself that the information isn't going in and I need that bit of quiet in order to function. Sound sensitivity is becoming quite a problem at the moment and I already have light sensitivity:

does anyone else have these issues and if you do how do you cope with them?

I can get really bad after a day at work, I put it down to all my energy going into my job and I don't have much left for when I am home. I work long days for 4 days - unfortunately I think that's how the construction industry is even if you're in the office.

Sorry if this doesn't make much sense or is really petty.

Thanks,

Leenie x

[Hidden]

I can relate to this Leenie and think my hasband could too as it’s already happened twice this morning. In my case he blames Heakthunlocked but the truth is it’s about retaining information we really want to and need to retain when we are innately fatigued. Don’t get too worried about it X

[Leenie0811 in reply to Hidden]

I am so glad I'm not the only one! Yeah I noticed my partner got a little bit funny about HealthUnlocked too... I keep telling him these are people in a similar situation to me and can understand a little better as they experience the same things. Its as if he wants to be the one helping but its okay to receive support from others.

I really get what you mean about retaining information, sometimes the 5 min discussion really could have been cut down to two points! Think I might invest in a notebook or something of that kind to make sure I can note down important things so he doesn't have to repeat himself.

Thanks for the help, Leenie x

[Krazykat26 in reply to Leenie0811]

That's what I do leenie..little lists for everything otherwise I'm stumped!! My hubby talks alot n usually takes ages to get to the point!! Nowadays I just interrupt him n say 'this isn't going in..so keep it brief n tell me what u mean'..it works for us!!

You're working long hours..that would make anyone feel tired...but with us it's more than that..everything's exhausting!! Do u know about the spoon theory? It's a story by a lady called Christine (sorry can't remember her surname) but she has lupus herself n it explains how it is living with autoimmune disease in an easy to understand way..I've shown it to hubby n my daughter's n other friends n relatives n they all agree that it's helped them to gain a better idea of how it is. If u Google spoon theory you'll get to it..sorry again..can't post links due to not being that cyber savvy!! Xx

[Leenie0811 in reply to Krazykat26]

I’ve just googled this and watched her speak on YouTube and that explains everything so well! I showed it to my partner he really thought it was a good way to explain it as well and now has more of an understanding of what’s going on. So when I say I’ve only done something he knows that’s all I’m capable of at that moment.

I can’t thank you enough for recommending this, I might even start using the spoons analogy myself x

[Krazykat26 in reply to Leenie0811]

I'm so pleased that it's helped 🤗🤗..now when folks ask me how I am I can say I'm low on spoons..rather than I feel like 💩!! Xx

[Lisalou19 in reply to Krazykat26]

I mentioned the spoon theory the other day at my first CBT session.

I never know how many spoons to start with!

She’s going to take me through something similar she said. Of course I will forward any knowledge gained xx

[Leenie0811 in reply to Lisalou19]

I’ve been thinking about CBT to try and help out with things you’ll have to let me know how you get on with it x

[Paul_Howard Partner LUPUS UK]

Hi Leenie0811 ,

This sounds a lot like what many people call "brain fog" otherwise known as cognitive dysfunction. It is very common in people with lupus. You can learn more about it and get some tips on managing it in our article at lupusuk.org.uk/coping-with-...

[Leenie0811 in reply to Paul_Howard]

Thank you for the information I had a good read of it and I can’t see how my situation relates, it’s as if sometimes his speaking stops be from functioning properly and I really don’t like it, I wish I had a more definitive answer to what’s going on with me so at least he knew

Thanks again, Leenie x

[NeuronerdDoaty]

I have lupus fog often. When I do I tell my husband it’s his ‘quiet day’. He chatters. I get overwhelmed. I tell him my brain is full. We giggle. I go to bed. Much love and comfort to you💛

[Leenie0811 in reply to NeuronerdDoaty]

Thanks, it’s so nice to know we aren’t alone and can relate to what each other are going through. I might try saying to my partner about quiet days, he’s noticed today I’ve not been right and told me to slow down so maybe we’re getting there with understanding.

Leenie x

[maggielee]

Hi yes it a strange to try & explain to our love ones that after a long day, your brain is taking verbal language in, repeating more frustrating, so more depleted energy to try & follow a conversation. Especially hard when they want to share & you want to shut down for the day or shorten the point of the conversation...

Hubby is getting use to me shattered after work & sometimes just need to lay down to rest abit... Thanks for sharing, spoon theory is helpful... ML

[Djlr in reply to maggielee]

Yes the spoon theory is a wonderful description - we do run out of spoons and some days are worse than others 💜😐🙃

[Djlr]

YES!!!!

Some days I cannot think there was anything, and I have to go very slow. And other days it’s like someone stepped into my body and my brain is clicking on all engines, up to par.....

I try to get everything done in those days where I am clear because the days that I am fuzzy and cannot think through things at the grocery store, it takes forever to get things done.

Are you going that was the neurologist because my husband was concerned. She said it was not all timers – thank goodness, it was just when I was at Lupus players or stressful situations it was causing my brain to be affected by the I try to get everything done in those days where I am clear because the days that I am fuzzy and cannot think through things even at the grocery store, it takes forever to get things done.

Are you going that was the neurologist because my husband was concerned. She said it was not all timers Dash thank goodness, it was just when I was in love with players or stressful situations it was causing my brain to be affected by lupus.

Rheumatologist, she shakes her head she has a got an answer. It’s just one of the symptoms that go along with flares for many lupus patients.

I know I need rest when this happens lots of rest, I think I am more dehydrated possibly, but really no medicines can really get it back in order.

A day or two of rest can make a huge difference for me – it is my body telling me to slow down – just like when someone has the flu – it’s actually slow down I can’t get up and run around and he can’t do a lot of mental activity when you have the flu.

That’s the best description that you can give to your partner, or your family, or your work .....so they can understand, “when they have the flu” how much are they actually able to think clearly on and try to get everything done at work or home, etc???????

I bet they struggle in the grocery store when they have the FLU!

Aren’t Their brains a little fuzzy during that time too? 💜🤔🤔🤔🤔🤒💜

[Leenie0811 in reply to Djlr]

I like that comparison to having the flu you wouldn’t get anyone trying to go out the house or do what’s considered normal because you’d be up in bed all day! If someone was to go and do their shopping with the flu then they’d be considered mad for doing it wouldn’t they?

I keep reading responses to my partner and he is really starting to understand now so I’m hopeful that this is the start of him being more thoughtful during the symptoms flaring

Leenie x

[Hamptons]

Yup, sometimes talk Babbage too, as I muddle all my words and struggle to retrieve the right ones. I just tell people to stop and ask to for processing time but I guess working with SEN kids I am in the right environment to say that. I have to be careful with emails I case I middle info or send them to the wrong people (been done). Annoyingly, I have to double check myself to ensure instructions have been given as sometimes I think I have done things I haven’t.

My partner is good and recognises the signs and works out my nonsense. I notice work colleagues are getting like that too. Hey, even some of the kids I teach. Just be honest with people, it’s part of your make up. It’s all about finding ways to live with it and manage it. I can laugh about s9me of the nonsense my brain puts together now I know I am not going mad. I got my rheumatologist to put it in a letter to my boss so he knows it’s a symptom. To which he said oh that makes sense now you often get names wrong at the end of the day. I had never noticed.

[maggielee in reply to Hamptons]

That great about working it out at work & support from doctor & colleagues will have to wirk on that one...ml

[Leenie0811 in reply to Hamptons]

Yeah I have days where people can work out my nonsense but most of the time I’m looked at like some kind of weirdo which really frustrates me so I’ll take up your point in being honest and say I need time to process things, Leenie x

[Cjgj]

Hi Leenie0811 yes I do this I read on here about someone else doing this and she takes 15minutes to her self I have stressful job as a career learning diss I have been struggling with everything pains in left side pains in legs crying lupus fog they call it .l don't want to go on the medicine they say after reading about t so I have been on computer and on draxe.com/top-5-lupus -natural-treatment-and remedies they say Omega 3if you don't eat fish which I don't and turmeric it's a anti-inflammatory so I am try these hope you feel better soon soon

[Leenie0811 in reply to Cjgj]

Yeah I’m the same I don’t eat fish but I’ve researched and you can get plant based omegas, think they are slightly more expensive than fish based ones but it’s gotta be better than nothing hasn't it?

I love turmeric so will defo be cooking more with it now!

Leenie x

[Angie245]

Yes I can relate!! Sometimes it is really bad I find it worse on work days or later in the evening. I was horrible yesterday to my partner and screamed “My Brain doesn’t ****** work I’m not purposefully asking you to repeat yourself!” 😢

I just can’t seem to process what is being said to me. I did it on the phone to the specialist nurse she asked me the consultants name and I could not remember then she asked me mine but because I’d gone in to a panic I then didn’t remember my own name!!! Had to just sit and wait for a few minutes. The nurse was lovely so I’m assuming it happens a lot.

I’m not sure if it’s anxiety or fatigue linked or if it’s just lupus/autoimmune diseases. Could also be medication. If always been pretty ditsy but this is a different level!

[Leenie0811 in reply to Angie245]

Yeah I’ve got to that stage before then swiftly apologised for snapping. Seems like it’s a long road of good communication and patience with each other isn’t it?

I’m sure the nurse gets it quite a lot so I wouldn’t worry about the forgetfulness on the phone, I prefer at work to email people so I know I get everything down in one go and can take my time writing what I need to but sometimes a phone call has to be done.

Stress seems to be a massive link to the brain fog/memory stuff doesn’t it?

Leenie x

[Lisalou19]

😬. Sometimes I can not tolerate the voice of my own children. I get agitated like it’s hurting my head and ears.

The normal response I get from my children is “what is your problem “

Or my little boy who’s almost six says “mummy you can’t tell me off for talking too much “ 😔. I can’t even begin to explain it.

I tend to just hide away upstairs in my bedroom so I don’t upset them. It’s not nice.

X

[Leenie0811 in reply to Lisalou19]

I can really relate to the hurting your head and ears it’s horrible isn’t it? I actually told my partner once his voice was like nails on a chalk board but I shouted it so he didn’t take much notice!

I can only imagine what it’s like to have kids when you’re feeling unwell especially a 6 year old! Maybe you could explain on a day when you’re feeling better about those days so they understand a bit?

Leenie x

[Blessings101]

Hi Leenie0811,

I can truly relate to everything you have said.

I have had symptoms of Lupus for years, but only recently been diagnosed with Lupus SLE, as well as Discoid Lupus.

I battle to mentally process things as fast as I did in the past, and it is extremely frustrating. I too have a very pressurised job as I programme manage ERP Application implementation projects, and have to always be on top of my game.

Unfortunately this is not always possible. I have had to learn to have patience with myselft and not except so much, or the same as I did in the past. Not the easiest thing though.

Light and Sound Sensitivity is a huge problem. I sometimes even sit indoors wearing sunglasses as the lights are to hectic for my eyes. Besides the ringing sounds in my ears/head, continuous sounds are most frustrating, irrespective of the volume.

The only advice I can give you is to have patience with yourself, it will take time to accept the change, as it almost feels as though you are dealing with a New You.

I find this site so helpful, just to know there are people out there going through the same symptoms and dealing with the same challenges.

Thank you for your post, and I do hope my response has ligtened the load slightly in knowing you are not alone.

All the Best and God Bless,

Chantal

[Leenie0811 in reply to Blessings101]

Thank you for your kind words, I can see how this is a new me and I wish I had so much patience that’s something I’ve never really had so probably a massive learning curve to handle now!

How did you handle not having a diagnosis for years? I’ve only been in this since October last year and getting really frustrated with the whole process!

I keep trying to make notes of my symptoms as they flare up to try and help the doctors but also to help myself I thought maybe if I can note it down and what I do to help it then maybe it will be useful for next time it happens.

Thanks again for your kind words, Leenie x

[Blessings101]

Hi Leenie,

For years I had joint pains and headaches, and because I was diagnosed with rhuematic fever as a child the doctors put it down to that.

My ANA test was high last year and the doctors suspected lupus. Again this year it was high and after Lupus was confirmed.

I too have never had patience.

I guess this sickness is forcing me to have. Huge learning curve, absolutely.

I took pictures of my symptoms and started a diary on my phone. When I seen my rheumy I had all the proof.

All the best. Let's keep chatting as it helps both of us, and I'm sure so many more.

God Bless and Take Care

[Leenie0811 in reply to Blessings101]

I went to my GP with bad light sensitivity when I started my new job last year I thought it was the lights in the office (I only moved down a floor but the lights were positioned differently) it got so bad I started having shooting pains but I've been moved and have a lovely wall in front of me now and this still happens! I wonder if it is connected as I know when I'm tired or run down it gets really bad.

I've started taking photos when symptoms flare up it seems the only way to show the doctors what is going on! Sod's law that when I go in there's nothing really to show...

Yes definitely keep talking! It does wonders speaking on here and the support from everyone

Leenie x