JME, mum and newbie!

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TimeW

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Hi all

I've been meaning to register/visit some kind of site focusing on epilepsy for quite a few years and currently the kids are in bed and my husband occupied elsewhere so tonight is the night! (I live in Australia hence the time difference).

I'm in my late 30s, with JME diagnosed at 16 years. I have myoclonic and tonic clonic seizures, and both have worsened significantly over the last 10 years. My fits are strongly influenced by my stress levels which, as I'm sure you know, can become quite a vicious cycle!

In general I take a positive approach to my epilepsy and for the most part it's manageable. I'm very lucky that my health is otherwise uncomplicated, and I have complete support from my husband and flexibility from my boss. Despite this it can feel a little isolating and frustrating at times as I don't know anyone with epilepsy - so I'm really looking forward to getting to know these threads. Cheers all.
 
TimeW

Well you have come to the right place so take a look around and see what you think. You are very welcome.
 
Hello and welcome. in my opinion, people who don't have epilepsy can't really understand it in the way those of us who have it can. Our friends, and families, co-workers, etc. can be supportive and everything, but epilepsy is interwoven with who we are, and the sensations that it causes us are very nearly impossible to adequately explain, since nothing else is quite like them. I've been diagnosed and on meds for about 32 years. (I'm almost 56 now), and I probably had unrecognized seizures long before that. For a number of reasons, epilepsy can tend to be in some degree isolating as well. For the most part there is no outward manifestation that there is anything wrong with us unless we have a convulsive seizure. I have found that my short-term memory has gotten worse over the last few years, which can cause problems in social and work situations.
Anyhow, I don't mean to be negative here. On the whole I have been and continue to be very successful in life and have had virtually no limitations on what I can do, but nonetheless my epilepsy has been an undercurrent to everything. That's why I like place like this, because I don't have to explain anything to anyone. They know where I'm coming from.
So, all that said, we're always glad to have new members, so pull up a chair and join the party!

Onward and upward!
 
I agree with what Arnie said and I believe you'll find this a wonderful, supportive and informative place to be. I've found it to be an amazing support and resource. I was diagnosed with "something that appears to be JME" at 42. Welcome!
 
Hi TimeW,
Welcome to CWE, you will find some great support on here.

I'm also an Aussie but there are members from all over the world so the time difference is no big deal.
I had my 1st seizure when I was 9 months old, I had tonic clonics on a regular basis until I was about 2 or 3, I then went seizure free until my seizures returned in 2002 when I was 24.
After I started taking seizures again I mainly took partial seizures with the odd tonic clonic. At the moment my seizures are pretty much under control.

It is great you have a positive attitude towards your epilepsy & great support.
I also try to keep a positive attitude about my epilepsy & try not to let it worry me too much.
 
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Hi, TimeW.

Welcome to CWE. There are people here from all over the world and regardless of that, we all have very different schedules. You should feel very welcome here. :)
 
Welcome! I am always inspired by everyone here! I am the mom of a teen diagnosed with JME and continue to find ways I can support her.
 
Thanks everyone, I really appreciate your responses.

arnie said:
On the whole I have been and continue to be very successful in life and have had virtually no limitations on what I can do, but nonetheless my epilepsy has been an undercurrent to everything. That's why I like place like this, because I don't have to explain anything to anyone.
Click to expand...

I think that's a great way to put it, Arnie. It is always there, a shimmer, that colours my thoughts and actions. I feel unexpectedly unburdened just knowing that there are others who can identify with this feeling. So thanks very much.
 
Welcome to the Cult of Defective Brains... orr, err.... umm... CWE! lol... Nah, we're all pretty tame here and just try to... well... cope...
 
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