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Ppl don’t get that Having a disability like Epilepsy. We have to network differently. Can’t just jump up and go get milk when I run out . Everything has a $sign next to it. I hate asking for help ! I can’t do it .
Every person that has Epilepsy is slightly different from the next but that is what makes each person unique in his or her own way. I began having seizures at the age of 1, have taken 32 medications as of this point and running out of medication options. I have gone through 3 surgeries; first brain surgery in 1995 then VNS device surgery in 2008, then DBS device placement three years later. Now I maintain my seizure activity. I can't drive but I am independent as I can take care of issues around the house, take care of my family and do what is needed on a daily basis without needing to be constantly watched over 24/7/365.
My husband does take me to doctor appointments the majority of the time or if there are early mornings he needs to get something else important taken care of I can arrange a schedule ten days ahead of time with the city medical taxi so in either case I am in good hands and will be taken care of.
Having the disability of epilepsy isn't an easy thing but it is a life I have been able to adjust to. I refuse to let this disability tell me how to live, I will be the one making the daily decisions within reason of course. I take each day as it comes and do the very best that I can. It's all that anyone can ever (or should) ask from you.
How can you work toward independence while managing epilepsy's challenges?
It's completely understandable to feel frustrated about needing to plan differently and rely on others. Many people with epilepsy share this struggle, especially when it comes to transportation and the financial burden of managing the condition.
There are people who get their epilepsy under control and become completely independent. Mine took more than 15 years. During those 15 years, I found that having a community really made the difference. My church family was my reason not give up and quit. My family was always talking down to me and saying that I should just give up. I focused on my church family, and I am now headed towards 12 years seizure-free post-surgery. I am over halfway to the Master's program, and I am in the practicum, starting the counseling part. All things that were said to be impossible for us. Never give up, and never accept "no" as an answer.
@A MyEpilepsyTeam Member, I agree with you about being unique and different from each other, and take everyday has it comes.
Amen!🙏🏽
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