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405 views 10 replies 10 participants last post by  helloos 
#1 ·
hello everyone

I hope that today finds you well and pain free.

I haven't been on as much as I would like. But sometimes just come on to read real quick.

I am not feeling too good and things a bit flared. Can't really get up and barely walk. My head has had this strange feeling one that it is hard to describe. Almost as if I would fall and become unconscious but that doesn't happen thank goodness.

I was at a really important meeting for work the other day and well sitting under florescent lights. I could feel my skin burning and face beat red and I started to get all confused and things weren't coming out of my mouth as I intended them too. I couldn't remember the names we were discussing and had to start to look at the documnents to remember and it kind of made me look and feel very very stupid. I just was very confused and everything was going blank. As I said this was an important meeting and all recorded.

I have been sick to my stomache about it since then thinking that I totally looked like a fool and incompetant and can't understand the conversation or what I said or they said. So it all seems like a blur to me and that is not a good thing..... it does in no way jeopardize my job, but I feel like I looked stupid and they all consdidered me intelligent - maybe until that meeting....see my confusion and the worst of it I cannot remember how exactly the conversation went word for word, so I keep trying to think about what they said,how I responded, how stupid I sounded that i couldn't get the words out right, how I had to look at documents to make the words come out and the names remembered....... I tell myself to let it go, but it is nice to keep the intelligence I have and my work is the only place that I can mask my lupus symptoms.......

maybe I don't even make sense now but had no one to tell without feeling dumb ......

so I will go back and lay down and sorry I cannot reply to anyone right now, maybe tomorrow.

My sincere hello to you all.
 
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#2 ·
Hello Paula (((((((((hugs))))))))))

Don't worry, I think many of us here have shared the feelings you are going through right now. We have often said things stupidly, or not reacted as we would have liked and then wondered what others have thought.

I had an incident the other day with an important client who phoned me up and asked me "is this sentence correct in English?" and then proceeded to tell me the sentence. The problem was she repeated it five times (a short sentence) and even after 5 times I was still incapable of saying it back to myslef and giving her a coherent answer.

Thankfully she has known me a long time but she certainly doesn't know exactly what's wrong with me and if I started explaining that it affected my brain at times, she wouldn't be sending me translations to do (this is a big international company). I was very glad this week when they asked me to confirm a sentence by e-mail. That way I have the time to get it straight in my head.

At the end of the day, I figure that I can't possibly go through life wondering about what I should have or could have done. I can't look back and regret what is already done as it won't change a thing doing that, it just makes me unhappy. So, when things like that happen, I take a concious decision to charge on forwards and simply, if I can, do something to avoid or improve the situation next time around.

Try not to worry about it. I bet that they didn't notice haf as much as you think they did. Here's loads of strengthening hugs and extra positive vibes...
:grouphug2:

Katharine
 
#3 ·
Paula,

Just wanted to say hello and really sorry to hear that you are feeling bad!

Really hope things pick up for you soon!

Love and hugs!

Lesley
 
#4 ·
Hi Paula
I shouldn't worry about the meeting - though I can completely empathise with you on this one. I'm in the middle of a flare - one which took me by surprise after 2 years of being virtually symptom free - and I'm struggling with meetings at work. As part of my work I lead training sessions, recently I've been finding it difficult to find the simplest of words and struggle to finish sentences. It makes me feel really stupid in front of a room full of professionals who have paid a lot of money to be trained!
Do hope you start to feel better soon - sending some cyber hugs your way (((((((((((((hugs)))))))))))))))))

Lis :)
 
#5 ·
:) oh it's soooo good to know that i am not the only one who talks nonsense/forgets words and names/makes a fool out of myself on regular occasions. At least WE all understand each other

Hugs all round
Rachel:grouphug2:
 
#7 ·
Dear Paula

Im really sorry you went through that experience. That kind of thing sure knocks one's confidence for six :sad:

What you described, being under the fluorescent lighting with your skin burning and getting redder by the second, is exactly what happens to me. Then I cant think straight, can barely respond and I find myself getting more and more flustered with each passing second. I just get the urge to flee the room.

Whenever I have to attend meetings with those kind of lights I try to position myself so that I am not directly under them. It doesnt always work of course but sometimes it does. I remember being at one very important meeting earlier in the year in a large trade union office and as soon as I walked in I knew I was in trouble. Lights, lights and more lights. I took a deep breath and asked the organiser if we could turn the lights off as I was allergic to them. She did and I managed the meeting fine.

Maybe you should explain to your colleagues that your allergy to fluorescent lighting caused your 'blip'? At least they would have an explanation and you would probably feel better about it. Also it puts them and you on alert in the future.

I know how hard it is to avoid this kind of lighting in a workplace but at least the more people know that it affects you, the more they may try and accomodate it.

Dont be too hard on yourself. :hugbetter:

Luv n stuff
Joan:rose:
 
#9 ·
Hi Paula,

It is disheartening to have that happen after you put so much work into the meeting preparation. Surprisingly when I think I am really messing up others around me don't notice near as much as I do. I am sure that was probably true at your meeting also.

Take care,
Lazylegs
 
#10 ·
I am so sorry to read that you are having such difficulties. I hope you find relief soon.
Be assured you are not alone in the "My head has had this strange feeling one that it is hard to describe. Almost as if I would fall and become unconscious but that doesn't happen". I have had that off and on for *decades* and have only fallen a couple of times. Maybe it is related to the "I have this odd feeling that I am going to barf but don't". It is not related to the "I am so infuriated with this idiot that I should break his silly neck but don't".:)
Be weller.
Douglas+
 
#11 ·
You are all so right and I knew if anyone would understand it would be you.

But it was actually a bit worse than my words describe here and it was VERY noticeable. I think I blew it.

See my job is confidential so without disclosing much, it was not a presentation, but a recordable conference that what I said really mattered in the situation for many people and I think I blew it. I was way to confused and the words coming out did not make sense and the more it happened the more upset and panicky I got....... and it was a blurr............Everything went blank. So yes, I really think I blew it and that is why it is very upsetting to me. Sometimes it happens at home or with family, even with my boss, but I easily cover it but this time it was way out of control. It is embarrassing to even mention.

Joan....I have the lights above my desk at work - out....the rest florescant are on...my boss knows this....however this conference was at another office where I guess I could have said something, but that is so embarrassing too...... we would all be sitting in the dark....and I usually do position myself away from lifes at doctors offices, etc. but this time, there was a chair for me and I could do nothing about it.

Douglas...you gave me a laugh, I needed that...thanks....

thank you to all who have responded, I am so glad to be able to share these things with you all.
 
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