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How Did Epilepsy Change Your Life?

How Did Epilepsy Change Your Life?

I was born, healthy and was always on top of the class before being diagnosed with Epilepsy. I had trouble understanding and solving questions. Had to go to speacial class and I became at the bottom of the class.
Lucky I was diagnosed here in Australia. My medicine are the only thing we need to pay for. How did Epilepsy change your life?

A MyEpilepsyTeam Member said:

I thank the Lord that since my seizures started I have never seen epilepsy as an impediment to live my life. Of course, it has pushed me back and closed some doors for me along the way, but others have been opened as well. Epilepsy has brought my family together (after my parents divorced) and has made me more sensitive to people with the same or different conditions. Through epilepsy, I have learned that I can fall continually and get up continually. I think that the biggest changed after epilepsy has been the lack of freedom, but even that, I have learned to accept and cope with the effects of limited independence. The Lord has been there with me along the way always watching and taking care of me. I should have died some many times before or at least been hurt real bad, but no, I'm still here as all of us are. The Lord has a plan for each of us and with His help, we will fulfill it. Last but not least, this website and all of the friends I have made and continue to make through the sharing of experiences, love, and good wishes.

posted about 2 years ago
A MyEpilepsyTeam Member said:

Mine wasn't diagnosed until a few yrs ago in my late 40's. I had to quit work. I put a burden on my family. My wife got sympathetic but also bitter, as the medical bills got worse.I had 2 surgeries not related, but necessary. I seem to be getting stupider. Forgetful,( i leave the stove on, I can't finish a sentence, I'm real clumsy,
My family members who don't live with me, think I'm making this crap up. From my in-laws- if Your denied SDDI your not disabled/ get to work.
From my nurse sisters (2) - when I said my 30 yr experienced epileptologist saw on my MRI that it was Neocortical and there was scaring from a long history of seizures, my almost LPN sister wanted to review my medical records. (I've had staring spells all my life and was ridiculed for it)
6 months ago My doctor and wife demanded I don't drive anymore. I've been a Stay at home for 8 yrs. we can't wreck with child in car. I can't shower alone. My wife had our Red bone retriever trained to be my full access Service Dog. She's my buddy. My house is my prison, but I love here!
I had the model 106 VNS installed 6 months ago and started a type of Ketogenic duet under my medical teams supervision and my life quality of life has improved greatly, but... I still have seizures every now then. Whether it be nocturnal, absence, simple partials, sometimes grandmal. At least one type every wee. Mostly the not so bad type. We had to hire a guy to cut the grass. It's too much for me. I have to be careful outside that I don't overheat. I get exhausted just checking the mail or vacuuming a couple rooms.
All known by the doc btw. I now have tinnitus thanks to the pills.
But... I wake up everyday and I love the Lord. He has blessed me in other ways, this epilepsy has drawn me closer to him, everthings gonna be alright.

edited, originally posted about 2 years ago
A MyEpilepsyTeam Member said:

Epilepsy helped me understand others who need extra love and care. I have a friend who has anxiety and depression like me. Her story is different from mine but we understand each other. Me and her are thankful for experiencing trial. We can now listen and understand others.

posted about 2 years ago
A MyEpilepsyTeam Member said:

Having epilepsy since a baby to present, a part of my life. I had to adjusted it , learn more about Epilepsy from my Dr. , Books, and other people with this disorder and compare the simllaritles and the differences.

Growing up with Epilepsy is just a fact of life . We have to try and keep learning, finding ways to cope, and maybe get a support group meeting going. Whether it be by an Epilepsy Organization or a independent group looking for others who want support.

posted about 2 years ago
A MyEpilepsyTeam Member said:

Being able to communicate with each other is a great way of making new friends, understanding others and gaining more information and knowledge on several ways to deal with epilepsy... Hang in there!

posted about 2 years ago
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