Memory Troubles

[Elaine H]

I have been working for a company called Employment and Disability Services, on a voluntary basis, they obviously knew all about my epilepsy, but what I'm about to tell you will once again show just how the public associate epilepsy with one image and nothing else, a person who falls to the floor, shakes, incontinence, foams at the mouth, and that's about it.

I've been told that I'm finished there next week, but they also mentioned that they were shocked at just how bad my memory has been, they actually said..." It's not been your epilepsy that's been the problem.... but your memory" I tried to explain to them that with Temporal Lobe Epilepsy, short term memory is greatly affected, mainly episodic memory, what's the point?? Even these people, who for a living, are supposed to help people with disabilities find work, have no idea of all the different types of seizure, and the different syndromes of epilepsy, affecting different areas of the brain. onder: I just wanted to share it with you, it's beyond belief the ignorance towards epilepsy in the United Kingdom!!

National Epilepsy Day approaches, we'll wear purple,:e: probably achieve very little, and that'll be it, National Shed Week will probably get more coverage once again. We have got to get together all of us, worldwide, and educate the masses!! Start talking and keep talking!!! Lotsalove to you all Lainey XXXX

 

[Chaz1]

Those %^$#@ !

"We have got to get together all of us, worldwide, and educate the masses!!"

Hear, hear!

Sorry to hear ignorance is so prevalent even in the 'HELP' organizations and instead of appreciating your voluntary services they have the utter cheek to let you go…to say society is disappointing in its understanding of E and all that comes with it is a huge understatement, and even more sad, all we have to do is go to the ‘specialists ‘to have this confirmed time and time again.

I will be turning my office purple 26th and my colleagues won’t be able to escape the messages I will be putting up/leaving all over the office, but I will soften that with some goodies, to create more interest

 

[Elaine H]

Hi Chaz Great to hear from you and many thanks for your positive feedback, I have lost so many jobs over the last twenty seven jobs, stupid ignorant empolyers with comments like "you don't look like an eppy" or "do I just step over you and call an ambulance?" Like you say, I did this job, unpaid, loved it, and I think, did a damn good job, but they almost looked at me as if I was making it up about the memory problems!!!
Good on you for turning the office purple on the, I'm going to try and get on local BBC Radio again, and I have written my book about my experiences with epilepsy, I am just trying to get it all typed up, nearly there, but I really do add to it weekly, I started writing it over ten years ago, I just hope it educates those who need it and helps newly diagnosed people.
I hope you are enjoying your time on this wonderful site? Great to hear from you, and we must become friends!! Best Regards Lainey XX

 

[Chaz1]

Yes Lainey, the ignorant world alright. My Son lost a job he loved recently, after 5 dedicated years of service...I love to plaster their window with Beware - ignorance in Epilepsy lives here. But we will move him forward on a positive foot, ……but I can tell u, the feeling I have inside towards these fools is not something I could leash on them, for they’d be 6 foot under…so pissssed off by it all, can only verbalize now and even then....my blood boils.....

Super, you are just great! Pray BBC will interview u again and well, we will all look forward to your book, which will no doubt be purchased by many of your CWE family…

 

[Cint]

Those %^$#@ !

"We have got to get together all of us, worldwide, and educate the masses!!"

:agree: We all need to educate the WORLD! It isn't just those in the UK, Elaine, that are so ignorant about E. So many right here in the U.S.A. are just as ignorant. I've even had those at the hospital working for my neuro tell me, "You don't look like you have epilepsy." I so badly wanted to reply, "What the hell does a person with epilepsy look like in your stupid mind? You're educated, yet you're behaving like an idiot?!" You're right Chaz, those %^$#@!!!

 

[qtowngirl]

yeah cint you got it... the WORLD!
it even comes right down to people who know you. it's excruciating.

i just got off the phone with my father in law who i haven't talked to in awhile but he knows all about the E and upcoming surgery. he asks how i've been doing, i say 'not very well,' and he says 'why, you don't have anything wrong with you.'

 

[qtowngirl]

I have been working for a company called Employment and Disability Services, on a voluntary basis.

for disability services ey. and voluntary! (insert foul language here).

Even these people, who for a living, are supposed to help people with disabilities find work, have no idea of all the different types of seizure, and the different syndromes of epilepsy, affecting different areas of the brain. onder:

there must be a way around this. in canada there is a law that states an employer cannot use a disability to fire/not hire you. and you weren't even demanding money!! (again insert foul language here).

National Epilepsy Day approaches, we'll wear purple,:e: probably achieve very little, and that'll be it, National Shed Week will probably get more coverage

national 'shed' week - omg lainey that's hilarious - laughed right out loud, you're awesome, i so needed that today :roflmao:

great to hear from you again. my eyes always light up when i see your name after such a long time. i want to talk to you about the surgery but i'll pm ya later. (((HUGS))) girl, and so sorry to hear your shitty news.

 

[seizing more]

you are right gtowngirl, even the people we know.My boss and a friend since childhood thinks i have panic attacks and not epilepsy, he thinks I can just wish it away and it will go....some others I know think I'm just nuts......

 

[huskymom]

I hear you guys. My sister, whenever I have had a seizure, will ask me "what did you do differently?" Well if I knew that, I wouldn't have done whatever it is! Then she will say "well you must have done something to make it happen." ARG!!!

 

[qtowngirl]

hm, sounds like she needs some pamphlets or research articles dropped in her lap.
'learning about E and how someone you love suffers from it.'

ARG!!! is right. god everyone is pissing me off lately! we should all just start our own E planet so that it's just us and we don't have to put up with anyone who doesn't want to get the real story here!

 

[Toxic-virus]

Elaine, Don't know if you have noticed but their seems to be a lil more coverage on epilepsy on tv last couple of weeks.
I'm not talking about, Kelly Osborne.

I've lost jobs because of it, ten I stopped disclosing I surfer from it, instead pulling sickies when needed.
There is a massive stigma associated with E.
People are scared.

I had a TC at one work, my work mates thought I had died and were massively upset, I mean really and those guys were tough.

I think it was really shitty of that company to act the way they have, surely anything important should be wrote down.
But ungrateful gits you volunteered your free time.
You should have a lil chat to BBC Radio Northampton, lunch time.
I know it won't change anything but it'll make you feel better.

 

[AndrewIrish]

I feel like drinking tea now.

 

[knothing]

It is enraging and frustrating but Lainey that is just classic line that sums up all of the stigma in one line . "It's not been your epilepsy that's been the problem.... but your memory". They are saying thanks for the free work and not foaming at the mouth over our paperwork or breaking anything by having a seizure. We just think you are a moron. That company reminds me of the Dunning–Kruger effect, you should look it up it is a fun read (at least for me it was).
Sorry that you lost a job you loved doing but their loss will definitely be someone else's gain.

 

[brydy23]

I recently had my yearly review and one of their criticisms was that I would forget things. I explained that I can't always help it because my epilepsy and medication can affect my memory at times. They just quite didn't seem to understand that it was something I can't help. I don't know about you all, but I seem to have times when I stutter or struggle to come up with a word even though it's on the tip of my tongue. So f-ing frustrating. My girlfriend is wonderful and usually helps me out, but others just give me a weird look. It sucks sometimes...

 

[CQ:)]

Hi Lainey,
Always good to hear from you. I'm sorry that the voluntary work didn't work out. I do agree that as a disability agency they should have some awareness of epilepsy & the different type of seizures.

From June 2002 - August 2004 I worked part time as a receptionist for a disability employment agency. This employment agency did a few different programs, not only did they help people with disabilities & medical conditions look for work but also ran Work For The Dole (WFD) programs. Work For Dole is where people who were long term unemployed were required to do voluntary work at an organisation (often it was non profit organisations) for 6 months to help them gain experience & some times it could lead to paid work.

One day in March 2004 I was at work at the disability employment agency & wasn't feeling to well. I had already had some simple partial seizures in the morning & during lunch but kept it to myself. After I finished my lunch I went back to my work but not long after I started to feel funny & couldn't handle working anymore so went to speak to my supervisor. My supervisor could see I was pail & not well so asked me to take a seat. I had a tonic clonic not long after I went to see my supervisor but don't remember much about what happened.
From what I was told (by both my supervisor & my Mum) when I went into see my supervisor to say I wasn't well she asked me to take a seat then rang my parents to say I wasn't well & asked if she should take me home. While my supervisor was talking to my Mum I started to go into the Toni Clonic, my supervisor said I was hvaing a Tonic Clonic. My parents told my supervisor to get of the phone so she could help me & ring for an ambulance. My supervisor rang the ambulance then called for 2 of our colleagues to come help. Because I started to seize in the chair they didn't want to move me so got another chair which they put my feet on. I keep pushing the chair away so they had to keep pushing the chairs together so i didn't fall.
They must've waited until I stopped convulsing before they moved me to the floor into the recovery position.

I only remembered sitting on a chair in my supervisors office just before I started convulsing then waking up on the floor in my supervisors office with my colleagues next to me & a colleagues jacket under my head which I had drooled all over
Not long after I woke up the ambulance arrived, my supervisor went to the hospital with me & my parents met us at the hospital.
I had partial seizures before in front of colleagues but that was the only time I had a tonic clonic there.

I have been doing voluntary work on & of since September 2004 at a charity shop, I mainly help the manager in the office but also help in other parts of the shop when they need me to (working on the counter, helping moving furniture on selling floor, helping with pickups & deliveries, sorting clothes). My boss has always known about my epilepsy, I educated him from the beginning on what types of seizures I took & what to expect. Over the years my boss has seen me take alot of auras & complex partials so usually knew when I was having a seizure. He would always be concerned when I took a seizure & would let me know what happened after I had a seizure so I could make note of it in my journal. Over the years my memory has been affected from the seizures & meds. My boss is used to me having a bad memory & it doesn't concern him. Quite often when he asks me to do some work he will say to me "go get your pen & paper to write it down so you don't forget'.

 

[Elaine H]

Hi John
Thanks for replying, but I have just spent the last thirty years since diagnosis,losing jobs, and trying to raise awareness of this, the most common neurological condition of all!! I've spoken in The House of Lords, done national radio and tv, BBC radio N'pton several times, and written numerous articles. Yesterday, I spoke to Epilepsy Action's PR dpt, pleading with them to let me do something for them, to get some national coverage for International Epilepsy Day. I can almost guarrantee it'll not be mentioned once anywhere, in the UK. I'll do what I always do, and look thru' all the papers and mags to see, Epilepsy Action themselves said to me "we've approached national tv and radio stations, but they just don't want to talk about epilepsy" OMG!!! Why in god's name not??? They are thinking about focussing Nat Epilepsy Week May 20-26th on Myths and Ledgends associated with epilepsy, might be a start, I have always said that the word, and I can't even bear to see it, epileptic, is still associated with witchcraft and demonic possession, madness and lunacy, and as with this last job, people still expect me to collapse to the floor, spitting foam, rolling my eyes, peeing myselves, kicking my legs etc etc! Short term memory probs aren't thought to go hand in hand with the condition, in all it's many guises. I studied and gained my qualification in epilepy with Leeds Uni as I wanted to know more about my TLE, so I could fight back a bit more, but we've all gotta fight, we are people with epilepsy, not bloody aliens from another planet!!!!!!!!! By the way, no, I didn't notice any mention of the word of epilepsy in the press John, sad to say. I'll keep waiting though.

 

[Elaine H]

Hi Brydy My memory frightens me more than my seizures! I have Temporal Lobe, and have had surgery twice, in fact, I asked the guy to put a zip in the second time, just in case they were thinking of a third op!! I know with me, because the temporal lobe deals with memory, speech, language etc, I am often lost for words, and I'lll be trying to think of a word or a name or place, or a short term memory, and I just cannot think, it's awful isn't it? if that's the area of your brain where the problem originates, that's why, I see you are on what I call the wonderdrug!!??!! Trileptal, that drug, for me personally, stopped my terrifying auras completely, and I just don't have them since taking it.
I can't believe people give you weird looks when you can't think of a word? we all get like that sometimes, with or without epilepsy, but I guess, if people know you have epilepsy, they expect us all to be stark raving lunatics who can't string a bloody sentence together, or get through a day without falling to the floor rattling and rolling. I'm glad you have a supportive partner, that sure helps, I used to have one, maybe one day I'll find another one.
If you ever did consider surgery, please feel free to ask me anything you want, and I hope you are getting great support from this wonderful site too? It's great isn't it?

Cheers
Lainey X

 

[MaeDae]

My 2cents

Im a bookkeeper, I am responsible for way too much. And since I started having simple complex partial seizures/aura's my memory doesnt serve me at all. It's getting worse as a matter of fact. One of my duties is to deposit money into accounts to cover payroll and expenses, well, one week I put together a $200 thousand deposit and put it in the drawer, my boss transfered the funds so bills/payroll was ok, but the steps to reconcile the deposit never got done. I forgot, I freakin forgot. It wasnt until we were looking for the insurance payment that it became apparent I had not done the remaining steps, it was 2 weeks later, freaking 2 weeks later. This is not the first time I have forgotten crittical steps and am sure it wont be the last, but heaven help me if I lose my job. Not only am I forgetful, but I can't focus. ADDHD, new for me. I've told neuro dr, he told me to write notes and I did, I started writing things down only to forget where I put the notes or not clearly understanding the note, so I wrote longer more descriptive notes, it helped but didnt solve my problem completely. So, now if I start a task, I dont stop until completed, if I cant get it done by the end of the day, I leave it lay on my desk no matter how sensitive the contents. It's been working somewhat, I'm having more problems now with the focusing part.

Thank you for starting this thread, I learned a lot. I wish the best for all of us suffering from any ill effects of epilepsy and meds.

 

[Elaine H]

I mentioned the National Shed Week here in the UK as a comparism to National Epilepsy Week because, going back a few years now, I was listening to the radio, and it was mentioned on the news that it was Nat Shed Week, what does your average Brit keep in his/her garden shed?!?! It went into great depth about this, garden rakes, tools, compost? I remember thinking, yeah, compost, that sums it up! A loada S**T!!!! What about some coverage for a really worthwhile subject?!?

I just cannot believe that when I spoke to Epilepsy Action yesterday, here in the UK, they are probably the largest organisation to help us guys, and they said when I suggested some national coverage for Nat Epilepsy Week this year (May20-26) that when they have approached the press/media and tv shows etc, people just don't feel comfortable talking about it. Yesterday on one programme, Alzheimers was being discussed, gradually, people are talking about dementia, prostate cancer etc, but never epilepsy.
My bloody shed is falling to bits by the way!!! So is my faith in mankind sometimes! Love to you all!! XX

 

[Cint]

Yesterday on one programme, Alzheimers was being discussed, gradually, people are talking about dementia, prostate cancer etc, but never epilepsy.
My bloody shed is falling to bits by the way!!! So is my faith in mankind sometimes!

:agree: I've lost faith in mankind at times, too!
So many unreliable idiots out there who haven't a clue what we go thru! Even my ex had the audacity to say to me how unbelievable it was that I couldn't remember things, and this was after the left temporal lobectomy!