What is the worst thing you have had said infront of you while recovering?

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LJ-Bain

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I know alot of you don't retain your memories after or during your seizures.
But for those who do....have you ever had to listen to anything cruel, or uneducated without being able to defend yourself?
It happened yesterday to me. I was recovering at work and I couldn't really talk or move yet but they always ask me to squeeze their hand to communicate with them. This is not a perfect system.
I can't squeeze when I'm seizing but only when I'm recovering and it all gets so confusing.
They are trying their best to help me but I don't always know what is best when I'm in the middle of it. Plus it must look pretty drastic when I'm recovering with my eyes still twitching slightly and drool cascading down to my shirt.
How does everybody else handle communicating? Or just not at all.
Is it better to be alone or to have someone around?

Oh yeah. The quote "See, she's squeezing my hand. I don't understand. She must be fine. They just don't seem like seizures". Thank-you well meaning and kind vet. If dogs could talk then maybe you'd understand.
 
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The best way to counter such talk is to address it directly. Explain to the offenders that partial consciousness is not the same as full awareness, that seizures come in all shapes and sizes. Most people are ignorant about epilepsy, rather than deliberately cruel, so they don't mind being [gently] set straight.
 
I was in hospital. and after a while i was fully conscious and alert, but confused and disorientated, so they left me alone again to try and sleep but i started wandering around the er, confused. only to be told by a nurse "this isnt a nursery! if you want to be treated go and sit down and behave like an adult" i dont recall this but this is what my partner told me.
 
Ouch! I'm glad you did make it back safely! I feel for nurses...they've been around the block and then some and seen so much. She obviously didn't know your full story...but still! Who says that?
 
Nakamova...I think I will talk to this one vet. She is a very kind person and I don't think she even realizes that I heard her. Sometimes I don't remember. This time I did. We'll have a little chat coming up I think.
 
i really get a chuckle when I see 'what to do if you see someone having a seizure' in the office.I have been asked all about 'your problem'.Do you really think they want to know how to help?Would you really want help from someone who has no idea how to help?
 
I have heard too many nasty things during complex partials where I am semi aware but cannot move or respond. Or when coming out of TCs
 
It's unfortunate, isn't Rae? It's terrible when it's from nurses and docs at the hospital too just because they think you're too out of it. I wonder if it's people trying to make light of things, make a joke or belittle you in attempts to control the situation? Doesn't help a bit though.
Libbyl: I don't think they really want to help if someone else can. I have instructions to give me sublingual ativan that I keep in the same place but no one has been that brave yet. It's funny to hear them talk amonst themselves and try to decided what to do.
Would I want them to help? Hmmmmm....if I'm turning blue yet please!
 
yes,most people are more frightened that they will do more bad than good,and in reality I can understand that too.
 
I had some sort of aura/partial while I was on the phone requesting a patient's brain scan report and my speech totally jumbled/cut-off for a couple seconds..I think.. and heard the clerk laughing "maybe you need a brain scan" . I was okay about the same time but just could not get any words out for a couple more seconds. I remember hanging up and thinking 'well I guess she has that right'. Funny and not funny at the same time.
 
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Awwww...sorry MaryK! I find that being on reception and keeping track of many conversations and phone call after phone call is harder than any physical labour. It's more work on our little brains than pick up this, or press this button, or mop that part of the floor.
You'd think it would be easier sitting on your tush but I find I struggle through my reception shifts and have way more seizures on those days.
It sounds like that patient took it light heartedly at least! It doesn't sound like you were much of an embarassment but I bet it scared you a little. I hope that hasn't been happening more frequently!
 
I'm unconscious when I have my seizures but people have conversations with me that I don't know about. My husband jokes with me and says that I must be talking to him subconsciously. He says that he could ask me anything and that I'll tell him the truth. Thankfully I have nothing to hide. I just hope he doesn't ask me something like, "Am I overweight?" LOL.
 
LJ: I am now retired, took early retirement. And you are so right about keeping it together with phone calls... my brain can only take in so much information then fuzz.
 
Cordero: Seizures = truth serum! Who knew? The same thing happens to my sister too. She can have conversations and go to work and even do a pretty good job at it but have no memory of it afterwards whatsoever.
It's a good thing you have nothing to hide. It's always easier to tell the truth anyways. So much less remembering to do it that way.
MaryK: Hurray for retirement!
 
LJ- This isnt an actual worst thing I have heard said (in terms of hurtful or ignorant) but it is the scariest thing I have heard said. Sometimes I have complex partials where its like my conciousness is handcuffed to a back wall in my brain and I can hear/see everything that is going on, but I can talk or move or control what I am doing. So in february last year I went to the hospital with some abdominal pain, and they gave me a drug called Hydromorphone. I am allergic to Morphine so pretty much instantly after I was given this, I had trouble breathing. Which in turned cause a few tonic clonics and ALOT of complex partials. I remember during on CP, the doctors were in the room and were talking about giving me a drug to counter act the Hydromorphone they gave me, and that if the seizures didnt stop they were going to intubate me and put me in a Med induced coma for a while, while they waited for the Hydromorphone to leave my system because they figured my heart or breathing would give out soon like the last time I was in the ICU. It was shear panic and I couldnt do anything but wait for the seizure to end. (I was in the ICU in july 2010 because of seizures. I have nightmares about it, even though I have NO waking memory of it)
 
Rae: That is terrifying. Truly. Did you know you were allergic to morphine before this? I can't imagine what that must have been like for you. No doubt you have nightmares about this. It sounds like you are lucky to be alive...and that they either discovered a horrible allergy or were incredibly negligent or unfortunately unaware of your reaction to morphine.
I hope you have that on a medic alert bracelet. I also hope you NEVER have to go through that again.

little fruitcake: Bless her heart? I've been to Texas a handful of times and that sounds about right! At least they are being sympathetic! People are funny.
 
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