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that you don’t want to be bothered?

September 30
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Answer Summary

Members opened up about their biggest pet peeves with family while living with epilepsy, with a recurring theme being the pain of feeling... Read more

Members opened up about their biggest pet peeves with family while living with epilepsy, with a recurring theme being the pain of feeling misunderstood, dismissed, or talked about rather than talked to. Several members described frustration over being labeled lazy when extreme fatigue makes daily tasks nearly impossible, being compared to other epileptics whose experiences are very different, and having family push unsolicited advice instead of simply listening. Many also shared the emotional toll of wanting space on hard days, with one member movingly describing surviving two induced comas and two brain surgeries while asking loved ones to simply offer patience and respect.

A MyEpilepsyTeam Member

And I don't even remember how many years ago now it was since I lost access to My Epilepsy Team account because I had been away from it too long, thus I was officially closed out of it. I have to believe that the founders of the My Team sites didn't mean to punish those of us with memory issues by locking us out of the accounts. And if I wish to go back on the My Epilepsy Team site, I must get an additional email address and start from scratch with a new account and just an ambassador as my friend on the site.

The subject line is my answer and the above is my frustration with My Epilepsy Team site. I am sure if I had bothered to join one of the other incurable disease or mental/neurological sites, then they same would have resulted.

The concept of creating these sites to allow us to socialize with others who understand us is excellent, but the fact that you did not create an option for us to verify that we are the same person and get into the original account means that you really did not see what Epilepsy alone, nevermind the combination of epilepsy, anxiety disorder and heavy depression can do together. I have been seizure free for over 2 years, but I have mild dementia from my dormant epilepsy in combination with my periods of losing control of my anxiety and depression. To this point, it is just mild depression, thus there are only certain pictures that I can look at from a trip that I was on with family members that I have no memories of or even know where it fits in my life timeline.

I don't honestly blame you for this because I have a rare condition create by a combination of these three. No human or even team can be prepared for all of the possibilities.

Thank you for the time that I had on your sites and the same for many others that I am sure agree!

John

October 1
A MyEpilepsyTeam Member

Dear David .. this be Jen, wife of William .. so be wishing I could be hugging your wife 🤗❣.. because I understand how she feel .. after a half century of loving my William through all he been suffering .. it be so hard to watch the one you love more than life be suffering so .. and be helpless to do anything other than being beside him and loving him quietly .. we who be the wives and caring for our beloved husbands need to be walking a fine line between keeping him safe .. and allowing him to be caring for himself as much as he be able to .. yet to walk into ER and she him as you be in that pic . ., I be having no words to make our feelings understood 💔😭😢.. one thing be crystal clear David . ., your dear wife be loving you deeply ., and she be staying with you no matter what .. as I be doing with my beloved William .. many a time William call me his gem💎... and you be having such a gem💎in your own sweet wife .. Gum beannaiche adh Dia thu,, my God Bless the both of you.. keeping you safe .. William and Jen💜💙💎🕊

October 8
A MyEpilepsyTeam Member

I know they trying to check if im fine but when i say im fine i expect to be left alone and calm instead of getting more annoyed about the situation

October 7
A MyEpilepsyTeam Member

Hallo ., this be William .. so sad Jen and me be feeling for all on here who be having pet peeves .. and all be understandable ., we cry for you💔😭😢💜💙
Yet with my dear wife and sons I have none .. I be thanking God each day for them all I do ., as I be so blessed to be having them ., gum beannaiche adh Dia thu.. Uilliam agus Jenn.. May God Bless you all, keeping you safe . William and Jen💜💙🕊

October 4
A MyEpilepsyTeam Member

When my memory is due to age. And being fatigue halfway through the day..

October 1

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