Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
I have been reading the questions and answers on this website since I was diagnosed with epilepsy and have found the participants to be thoughtful, caring, and "supportive". I see the website as a safe forum for opening up. I don't need a response to this, I just need to say it for dealing pruposes.
I have always been a strong (mentally, physically and emotionally) person. I have always had a positive outlook. It's not that my life was cushioned form harm, in fact, I have survived some pretty horrible challenges. I have held on because of my belief that "what don't kill ya, makes ya stronger".
I am in a mental crisis right now, and am just so disapponted in my lack of ability to deal with my failures. I was at work the other day, on a 24 foot ladder and started an incomplete seizure. I felt it coming on, as I always do. Instead of calmly climbing down, I panicked and had a complete meltdown. I cried to the point of not being able to breath. I'm sure it was because of my lack of sleep, my loss of balance since my seizures began and my "being so strong" from the beginning (not allowing myself the right to be pissed or depressed over the onset of epilepsy). I felt like a complete failure because suddenly I couldn't do my job. I have lost confidence in my ability to do any job I would have blindly jumped into previously. I lost the confidence to travel alone (I prevously drove cross country about 20 times alone, including to Alaska). I have camped and hiked and lived in the most remote areas without fear. I was so brave and so confident that I could handle ANYTHING thrown at me that epilepsy was not going to bring me down or change me. And now...I have become a fearful and uncertain about EVERYTHING! Deep sigh. I thank you for letting me say these things. As supoortive as my friends and family are...what can I say, they already try to overprotect me from harm since they found out I have epilepsy.
I have always been a strong (mentally, physically and emotionally) person. I have always had a positive outlook. It's not that my life was cushioned form harm, in fact, I have survived some pretty horrible challenges. I have held on because of my belief that "what don't kill ya, makes ya stronger".
I am in a mental crisis right now, and am just so disapponted in my lack of ability to deal with my failures. I was at work the other day, on a 24 foot ladder and started an incomplete seizure. I felt it coming on, as I always do. Instead of calmly climbing down, I panicked and had a complete meltdown. I cried to the point of not being able to breath. I'm sure it was because of my lack of sleep, my loss of balance since my seizures began and my "being so strong" from the beginning (not allowing myself the right to be pissed or depressed over the onset of epilepsy). I felt like a complete failure because suddenly I couldn't do my job. I have lost confidence in my ability to do any job I would have blindly jumped into previously. I lost the confidence to travel alone (I prevously drove cross country about 20 times alone, including to Alaska). I have camped and hiked and lived in the most remote areas without fear. I was so brave and so confident that I could handle ANYTHING thrown at me that epilepsy was not going to bring me down or change me. And now...I have become a fearful and uncertain about EVERYTHING! Deep sigh. I thank you for letting me say these things. As supoortive as my friends and family are...what can I say, they already try to overprotect me from harm since they found out I have epilepsy.
it took me another 2 years before i would leave the house alone...i was terriffied..sigh..i am still not controlled..not by a long shot..at present i have 4-5 what am now calling grand mals a day..sigh..and i have cluster seziures as well..my neuro just told me he upped me to a status epileptic...but i figured to hell with it..i have identifiction in my purse..medical alert on my body..and cell phone handy..sigh...i wont let it rule my life..it has already taken so much from me...i also have primary progrissive ms...but the epilepsy comes first...mind you when i first left the house alone..grin..it was small..and i do mean small trips to begin with..smile...and i cant say i would go cross country as of yet..smile..but i have taken 4 hour train trips alone..i just inform the right people about my medical condition before i get on and give them my information first...
i hope you work past this..it may take some time..we each have our own calander of time for these things...but please try to work through it or perhaps join a live support group as well as this one...i know how hard it is..but we cant stay shut up forever..smile...
and your right...family and friends no matter how much help and understanding they want to give..they just dont get it..not until they have it..unfortunatly...i was finally made aware of that the other day when my spouse brought home a huge bag of oranges..grin..my number one seziure aura..sgih...his response....they were on sale...rofl...duhhhh...
hugs
heather
Grab an oar, because most of us are in the same boat as you !!!
I thought I got over the worst of it, then Bang, back to step 1 again....
I use to do everthing & anything before the E started, now I have to have a good think before I do things, I used to go surfing at the beach every day, I haven't been in the water since that day I was told I had E... It makes you think a little bit more on what you can & can't do in life.
I have a little saying I like to use.....
They say Heaven is up & Hell is down, so we must be currently living in confusion.. As no-one really knows where both these places are..
The way I look at it is people that have seen what a Tonic clonic can do to others, might be a bit daunted about what they have seen, what I did when I had one on a job site, was to make sure the people that I was working with knew I was alright. Pesonally I think the meltdown stage is part & parcel with the meds myself, And a person that says they don't have one are kidding themselves in the end... God bless & take care !
we are very good at adapting to the situation. you have not failed!!!!
you just have a new situation to deal with and you need some time to learn the game!
it has taken me over two years to recover from being fired from my job for having a seizure in a patients room. i am okay now.
time for the next phase
be kind to yourself.