New here.. Hi ... and alone, no one can relate to me in my life

[ShannonD]

Hello, my name is Shannon, I'm 36 and have had seizures since I was 13 years old. I know no one with epilepsy so I feel alone. I don't actually feel like I have someone to talk to 100%... I do have supportive people in my life, but since they don't have epilepsy they can't fully understand... and do tend to brush off days I am not well. I was hoping to be able to join in conversations with people that know exactly how it is like to be an epileptic.

 

[CQ:)]

Hi Shannon

Welcome to CWE, you are not alone. You will meet some great people on here who will be able to relate to epilepsy & share their stories or just give some good advice.

 

[huskymom]

Hi Shannon and welcome!!

You have found a great support system of people here! We have all had different experiences, so there is always someone here who knows where you are coming from. Just enjoy reading the posts and jump in whenever you want. Glad to meet you

 

[Dolores]

Welcome Shannon,

I do understand. I've had epilepsy for 40+ years but only recently met 2 people with epilepsy. So for over 30 years I was "alone". My seizures are now under control but the side-effects of Dilantin and of an epileptic brain were difficult to deal with especially because I had no proof that what was happening to me (memory loss, lack of coordination etc) were all related to my epilepsy.

CWE is a great place to gain knowledge (I found the proof I need ), discuss your issues with people who understand, vent your frustrations and just hang out. The people here are wonderful, I'm glad you found the site!

 

[Nakamova]

Hi Shannon, welcome to CWE!

Folks here definitely "get it" about epilepsy. You are not alone! I hope you feel free to explore the different forums here, and post as the mood strikes.

Best,
Nakamova

 

[jyearta]

Hi Shannon,

Welcome to CWE and you just found the place you have been looking for.

The people in this forum are understanding, share their experciences about E. or Dr. and meds. and just what it feels like to have E.

I want to encourage you to go into all the forums and read as much as you want. That helped me alot.

Ask any question you want.

 

[MuayThaiFighter]

Welcome and im glad you're here. I felt the same way until I got on this forum, about not being able to relate. Couldn't relate to anyone, just felt lost. You are in the right place, the knowledge and support people on the forum give is a huge asset. I'm always here to talk, so you are not alone.

 

[PFunk]

I do have supportive people in my life, but since they don't have epilepsy they can't fully understand...

I felt the exact same way but since I joined CWE that is no longer so. There are some really wonderful people here. I second what everyone said above me!

So, welcome!!

 

[tkopi]

Hi Shannon and welcome to CWE. Boy have you come to the right place. Everyone on here can relate to each other and you get all sorts of info.
Feel free to ask any question you want or if you just need to blow off some steam there will be some one with an open hand ready to help.
Again welcome!

 

[Chaz1]

Warm welcome Shannon.

Not me with E, it’s my Son of 26.

My Son was saying to me before dinner tonight, odd name Coping with Epilepsy as he saw me on the forum again, and he asked me so Mum, how you think I am coping with Epilepsy, I said I felt he is coping great and he is . One of the reasons he/we are coping so well is because here we (our family) have learnt so much and we talk about all potential options (many of which we have put into practice), keeping the hope high….

AND in my heart I now know he will know where to go if he not coping, yep, it will be straight to CWE I have great comfort knowing that if he ever needs the support, he knows where to find CWE

 

[kellert16]

WELCOME!!! I joined here for the same exact reason, if someone doesn't have it, they don't understand and sometimes judge.... or put me down. I have only been here for a short time but I sure love it here and feel like a big family! If you need anythings I am more then willing to talk!

 

[Fedup]

ShannonD

Welcome to CWE, and feel right at home. Everybody is willing to help and listen.

 

[ShannonD]

Thank you everyone! I feel right at home. Everyone is so nice

 

[qtowngirl]

Welcome welcome!
It's strange isn't it; they say epilepsy is fairly common (here in Canada they tell you one in 300 people), yet a good portion of us on here have never met or heard of anyone in our lives having it.
That's the gold of CWE. Ask anything Shannon, from seizures to jobs to sex to doctors to... you'll see. Everyone's friends here b/c we know exactly what it feels like to be 'us.' Glad you're here and talk away!!

 

[Crash]

Welcome welcome!
It's strange isn't it; they say epilepsy is fairly common (here in Canada they tell you one in 300 people), yet a good portion of us on here have never met or heard of anyone in our lives having it.
That's the gold of CWE. Ask anything Shannon, from seizures to jobs to sex to doctors to... you'll see. Everyone's friends here b/c we know exactly what it feels like to be 'us.' Glad you're here and talk away!!

Thats a very good point Q,ive seen two tonic-clonic,one was a random guy at a bus stop,and a girl had one in my house.Its weird to see peoples reactions to say the least.But i still dont know anybody with epilepsy,apart from on CWE.

My brother said a 50 year old woman took a seizure at college last week,once again a tonic,he couldnt believe it people were actually walking past her,some more or less over her,so it still shows you what we are up against.

Anyhow at least you have found this site now,it is great,all the best.

 

[katzy]

Welcome to CWE and I'm glad that you found this forum! I was diagnosed at 13 too

 

[SAF]

Hi Shannon,

I know how you feel. Everyday is different and people just don't seem to understand what it is like. The meds alone make it difficult to feel 100%.

 

[ShannonD]

Hi Shannon,

I know how you feel. Everyday is different and people just don't seem to understand what it is like. The meds alone make it difficult to feel 100%.

That is so true!!!!

 

[ShannonD]

Welcome welcome!
It's strange isn't it; they say epilepsy is fairly common (here in Canada they tell you one in 300 people), yet a good portion of us on here have never met or heard of anyone in our lives having it.
That's the gold of CWE. Ask anything Shannon, from seizures to jobs to sex to doctors to... you'll see. Everyone's friends here b/c we know exactly what it feels like to be 'us.' Glad you're here and talk away!!

I will, thank you it will be WONDERFUL having a conversation without using the words (I wish I could describe it right) and ( omg the pain and weakness after a grand mal is ....) and (no, I have no idea what is happening around me) lol

 

[new shoulder]

i just found this site too. Also feel the same as many here: can't relate to the world around me, to the people. I see the people all seem to relate to each other, and i find i do well one on one, but i'm terrible in groups and my different-ness has always made me stand out, in a bad way. scapegoat and shit magnet. Not being walked over while t-c'ing in the hallway, but walked over figuratively in the job place, the social life, and in my family.

Never knew what was wrong. Age 40 finally got the news. All these years my self-image has been formed and solidified through the faulty perceptive/cognitive epileptic brain and been very depressing and turned to much self-loathing. Now i know epilepsy is at the root of the problems, i am trying to do a psychological overturn, to see what's me and what's based in epilepsy, and i find that nobody can help. the best i get is ppl here and there try to understand what it must be like.

Good luck.