Elaine H
New
- Messages
- 498
- Reaction score
- 0
- Points
- 0
Hi CWE and Bernard
Wow, I feel like I'm home I really do!! I haven't been on for a while for a ton of reasons, but I've been dragged into a couple of Facebook websites re epilepsy, and I just wanted to kind of warn you guys on here, or see if anyone had experienced the same hostility as I just have?
I've been playing around with Facebook, and I've found myself getting uninvited e.mails from a group called United Kingdom against Epilepsy, and another called something like Epilepsy Fighters Speak your mind (which is a contradiction in terms) as you are certainly not allowed to speak your mind and when I tell you I was shot down in flames when I did, you'll probably not bother going there. Yesterday, I had an e.mail from a guy asking if anyone else had experienced discrimination in employment, if you know me on here, you will know that I was only too pleased to write back and support the bloke, having been booted out of several jobs, this is where madam smarty pants comes into it, sticks her nose in, and gets really rude to me quite personally, me being me, a crazy horse without Keppra, I fired a few rounds into her and she got both barrels, no swearing though, but what she wrote back was disgusting, and my challenge about it being a "speak your mind" site went unanswered, we are all adults, discussing a common denominator, and she wasn't even in on the conversation, I was so angry, I did have some support from others on there, but after a very tearful day anyway, I deleted them all and went to bed.
A few of the guys I've met on here over the last few years don't bother with these Facebook sites, saying that they are set up by "Joe Bloggs" people claiming to be professionals, any old so and so can set them up, and they are feeling sorry for themsleves, don't like any retort from anyone, and I really just wanted to warn anyone who hasn't tried them yet not to bother? I've been telling everyone about CWE, you really can talk about what you want on here, I don't think I've ever upset or offended anyone have I? I know I can be a gobby cow, but that's the Jock in me and as I said, Keppra hardly makes you sit back and blush does it folks? Buut come on, you all know that we have to get out there and talk about epilepsy, on the UK site, I suggested that we try and get celebrities with epilepsy to come out of hiding during Nat Epilepsy Week and Purple Day, and wave the flag too, they accused me of two things, trying to plug my book, which is a long way from being typed up yet, and of slagging off all the hard work people do across the world at the moment during these two dates in the epilepsy calender?!! I just couldn't believe it.
I'm going to drop into CWE a couple of times every day from now on, it's an intelligent well put together Forum, and it's for people with a condition called epilepsy, and we all want the same thing, to rid the world of the unbelievable stigma that exists towards us, I still do not have a job though!! Hope you are all ok though?
Lotsalove
Lainey
XXXX
Wow, I feel like I'm home I really do!! I haven't been on for a while for a ton of reasons, but I've been dragged into a couple of Facebook websites re epilepsy, and I just wanted to kind of warn you guys on here, or see if anyone had experienced the same hostility as I just have?
I've been playing around with Facebook, and I've found myself getting uninvited e.mails from a group called United Kingdom against Epilepsy, and another called something like Epilepsy Fighters Speak your mind (which is a contradiction in terms) as you are certainly not allowed to speak your mind and when I tell you I was shot down in flames when I did, you'll probably not bother going there. Yesterday, I had an e.mail from a guy asking if anyone else had experienced discrimination in employment, if you know me on here, you will know that I was only too pleased to write back and support the bloke, having been booted out of several jobs, this is where madam smarty pants comes into it, sticks her nose in, and gets really rude to me quite personally, me being me, a crazy horse without Keppra, I fired a few rounds into her and she got both barrels, no swearing though, but what she wrote back was disgusting, and my challenge about it being a "speak your mind" site went unanswered, we are all adults, discussing a common denominator, and she wasn't even in on the conversation, I was so angry, I did have some support from others on there, but after a very tearful day anyway, I deleted them all and went to bed.
A few of the guys I've met on here over the last few years don't bother with these Facebook sites, saying that they are set up by "Joe Bloggs" people claiming to be professionals, any old so and so can set them up, and they are feeling sorry for themsleves, don't like any retort from anyone, and I really just wanted to warn anyone who hasn't tried them yet not to bother? I've been telling everyone about CWE, you really can talk about what you want on here, I don't think I've ever upset or offended anyone have I? I know I can be a gobby cow, but that's the Jock in me and as I said, Keppra hardly makes you sit back and blush does it folks? Buut come on, you all know that we have to get out there and talk about epilepsy, on the UK site, I suggested that we try and get celebrities with epilepsy to come out of hiding during Nat Epilepsy Week and Purple Day, and wave the flag too, they accused me of two things, trying to plug my book, which is a long way from being typed up yet, and of slagging off all the hard work people do across the world at the moment during these two dates in the epilepsy calender?!! I just couldn't believe it.
I'm going to drop into CWE a couple of times every day from now on, it's an intelligent well put together Forum, and it's for people with a condition called epilepsy, and we all want the same thing, to rid the world of the unbelievable stigma that exists towards us, I still do not have a job though!! Hope you are all ok though?
Lotsalove
Lainey
XXXX
Last edited: