poll: what are your daily epilepsy struggles?

daily struggles

  • depression

    Votes: 68 54.0%
  • psychotic thinking

    Votes: 14 11.1%
  • dealing with medical community / Rxs

    Votes: 40 31.7%
  • stress / anxiety

    Votes: 86 68.3%
  • feeling lost / helpless

    Votes: 51 40.5%
  • feeling separate / loneliness

    Votes: 70 55.6%
  • panic / fear

    Votes: 38 30.2%
  • pain management / coping

    Votes: 23 18.3%
  • not driving / other physical challenges

    Votes: 74 58.7%
  • disbelief / rationalizing

    Votes: 26 20.6%

  • Total voters
    126

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What are my daily epilepsy struggles? All of the above.

Wake up depressed about the same old routine Pop my AEDs hope
for the best. It just makes me want to go psycho on my house and
trash the whole place.

Hello neurologist are there any new AEDs that might actually help me? No, ok just write my Rx for the same ole crap. Hi pharmasist, can you fill this Rx for me? Sure I'll wait until you call all your friends and family while you're supposed to be working.
It's not like I need this Rx for anything serious.

All that crap makes a nice stressful day. Can't do much more than that. Can't
drive, can't work, can't enjoy life. I might as well find a cardboard box to live in. Anyone get a new refridgerator lately? The way my life is going I guess it's time to let the old doc crack my skull open for a round of "OPERATION", but he needs to remember this isn't water on my knee. Also if the machine buzzes, he doesn't get a due over.

Pain, what pain? I don't feel no stinking pain. I'm so used to the headaches I could set a clock to them. Can't drive, can't go to the gym. Even if I did get there, who would care if I lost three pounds. It would only be my head being crushed by one of the machines during a seizure. I can't believe I'm stuck living a crappy life like this, day in day out.
Who knows maybe I'll win the lottery one day. With my kind of luck the day after I win, I'd die.
 
I am ready for a positive change. I'm thinking about moving to Sandiego California. What do you guys think. I want to start new. They have good Dr.s. I would have to check the schools out. I sick of living here in the rain with all this stuff that has happenned to Alex and I.I need some sunshine. I need some input.
 
My top struggle is my memory. I assume it is due to the amount I seizures I have. I've read and been told that small simple partial seizures I don't even notice can damage my memory along with other causes. Before I even started taking medicine it was bad. I hate when people mention things that seem pretty important that I have absolutely no recollection of. I was not diagnosed with epilepsy until the age of nineteen but I no longer recall my childhood except for the constantly retold stories. I try my best with many strategies to compensate for my memory but it still is a struggle. I never know how many times I am repeating a conversation or question until the look of their face relays to me be quiet.

Depression would be the second struggle with epilepsy. I've always had it. It seems to be closely related with epilepsy and very low moods possibly predict and oncoming generalized seizure. I am grateful for the way my depression seems to have reversed since epilepsy has taken me. I no longer am so mentally depressed.

Not driving might be one struggle, but I would call it being burdensome or dependent on others. When I am in countries/large cities with good metro rail systems, it feels better. I'll wait for the automated auto as opposed to waiting for people to agree to increase their taxes for changing transportation.

In moving it is always possible to rent or room and board with someone for a time to get the feel of a place and make sure it is compatible with you before you make a permanent decision.
 
Stilldancing, if you move out here let me know and we'll go out and have fun! (I missed the whole conversation and am literally jumping into the middle lol so excuse me) But San Diego is my town and that got my attention. :)
 
Stress/anxiety and separation/loneliness. I'm one of the caregivers rather than the one with epilepsy, but our son's condition (combined with autism) makes it difficult to move freely throughout the community. My wife and I are rarely ever to do anything apart from the children together, since we know almost nobody who's able to care for him if he were to have a seizure (and he's a challenge even when he's not having a seizure).
 
The not driving and the anxiety are my biggest ones and contribute to many of the other options. No public transportation in my small town so going to work is utterly impossible since we live far away from anyone we know.

My anxiety makes it to where I don't want to leave the house. My house is my comfort zone and being anywhere else makes me uneasy. My anxiety only kicked in like this after my grand mal last year.

I only have the more serious seizures once every 1-3 years, but the simple partials most days and throughout the days. Now that I know my episodes are seizure related it causes even more anxiety. Eck
 
I hate not being able to drive, not the fact that I want a car, I want to get out, I'm stuck in the house all the time and I don't have many friends because of it.
 
I hate not being able to drive, not the fact that I want a car, I want to get out, I'm stuck in the house all the time and I don't have many friends because of it.

I sort of know the feeling. While I live with my mother, she is getting older n' older. Where I am having to do more for her. Because she can't do it anymore, or is close to that point.

My only friends are online and/or, at the bike shop and/or, the bike club I am a member of.
 
This ain't a daily struggle but i mulled it over the other day while filling in an application form for a job.As soon as it asks me about my medical history,i am compelled to lie.If i don't then i KNOW i ain't going to get a fair crack of the whip as other applicants for the position.I suppose i suffer from this tinge of guilt every form i fill in,and it ain't even my fault.F&*k LIFE IS STRANGE.
 
oh yeah, forms :(
what do you guys have there for rules re: medical discrimination?
 
Oh there ain't supposed to be medical discrimination,but it's like anything.They might say it ain't allowed but i can guarantee that it does go on,law of the jungle and all that jive.
 
lol law of the jungle. well that's when you fight back like a tiger ;)
 
Nah on that page i lie like a snake Q!
 
You have been duly thanked!!!:)
 
oh yes, ahem, how are those coming for you by the way??
 
...........I think the numbers speak for themselves,but i shall fight like the tiger mentioned above.So don't you be getting sloppy now,cause im ready to pounce!!!
 
...........I think the numbers speak for themselves,but i shall fight like the tiger mentioned above.

:banana: omg thanks you, i needed that laugh. maybe muay has some pointers for you...
 
That above post will be forever used as my incentive from this day on!!!
 
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