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

qtowngirl

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i wasn't riding ya, i honestly did think it was cute.

but, *chortle chortle*..... any help you can get right........ :roflmao:
 

Crash

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Oh so did i,internet sarcasm sometimes don't carry to good,sorry

But yeah chortle chortle,any help i can get.........very good.But this dog ain't down yet,just remember every dog has his day,and i ain't had mine.:roflmao:
 

qtowngirl

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hahaha you're so clever you ;)

well, i just realized (as you and i tend to do...) this thread is about daily E struggles, so, to get back on track i'll thank you neil, as the day we've met my E struggle has been a bit lighter of a load.
 

Crash

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Oh it's me is it??? But yes your right

:hj: by QTOWNGIRL,TSK,TSK!!!
 
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reply to poll

I would say biggest struggles are
1) not driving.
2) The apartness issues from everyone else despite the fact that I do work and am with people a lot. Still feel disconnected.
3)Dealing with the medical community
 
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Excellent poll! I just passed the point where I can get my license back... only to have another seizure. It just feeds my depression that I have to ask for rides from my family just so that I can go see my friends or go see a movie.
 

DaraH86

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i think for me its the depession and having to rely on everyone else for rides. (which is no one ELSE but my husband who works from home) so if he doesnt "feel like" taking me somewhere then its pretty much NOT going to happen.

i dont have as much trouble with dealing with the pharmacy, but with the doctor it can just be impossible. He tends to believe what my husband says over ME because im "not in control or conscious when this stuff happens" and with my husband not wanting me to drive anyway, It just gives him all the more motive to lie to the doctor and tell him ive had a partial awake seizure when i know i havnt. my husband pays for my medical stuff in cash or credit card because we dont have insurance right now. he wont pay for me to switch doctors because he likes that this man will believe whatever he says over ME. so it causes me some serious depression and hopelessness at times.
 
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I've had some real trouble with my Doctor(s). So I hear you! I'm sorry that your doctor doesn't listen to you and I wish you all the best in trying to get some help.
 
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Waking up taking my aeds and praying that they work feeling tired and alone. Spending my days looking out the window wishing I could go do something. Not being able to drive any more makes life tough and living alone makes me paranoid everyday is a struggle but I'm getting used to it and trying to be positive
 

qtowngirl

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Excellent poll! I just passed the point where I can get my license back... only to have another seizure. It just feeds my depression that I have to ask for rides from my family just so that I can go see my friends or go see a movie.
:hugs: i'm with you. just don't stop getting screwed do we.
at one time i got mine back after a year, drove my first day, had a grand mal that night. bleh.
 

C0urt

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I think a lot of us are.....several of us miss our motorcycles
 

KaySara

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Depression, not driving, being a burden on persons although they assure me I am not but loss of memory is a major factor, not to remember many major family events or many of my own lives events......
 

Janus

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I am cool without driving. I walk/bus all the time and bike and am thin because of it. I have headaches and indecisiveness/anxiety badly so that I pace a lot worrying about what should get done and don't do any of it. And memory issues so bad that i worry about what i must have forgotten and there must be something big i am missing right now!
 

sassi

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Probably depression, feeling alone (namely because the people in my life don't really understand and they can't), feeling pain due to headaches (almost daily), Rx stuff, trying to believe it and my biggest problem is disbelief. I'm a good rationalizer and I can deny anything and make it seem like it's nothing when it's really something.

Memory issues are also something I deal with on a day to day basis and that's gotta be the most disheartening thing in the world. It just feeds my depression lol. Oh lovely.
 

C0urt

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my legs actually hurt if i don't ride my bike every so often, so I have to stay stretched out I guess it helps.
 
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If I don't get up every day and get myself dressed, get out side I will stay so depressed its unbelievable. Then I get Alex up for school. Sing to him. Take him to the bus stop. We talk about the day. I rest, clean. (sometimes). Then I go for a coffee after Alex gets out of school and we talk about our day. That and prayer and family are my life, and they are who and what rescues me.
 

Janus

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I have motivation problems and a lack of energy. I tend to drink way too much coffee just to keep going and i know that is bad for energy so, ? ce la vie ,
 

QueenieKP

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Depression bites my bottom on a fairly regular basis. As does the odd psychotic episode, but I know the drill now and more importantly people round me know what to look out for when things are going a bit Pete Tong. So I can go from wearing a tin foil hat to normal parameters of mental and back to work in a few weeks.

I get anxious about stupid stuff like not putting on the dish washer at work or the alarm going off because someone from another team hasn't said they we're working late. I think that if I didn't have brain fog I would never forget anything. I never had to keep a diary now I have to write copious notes on my phone and set reminders and I am a complete ditz for taking my medication. Whiz doesn't help with seizure control doh!

Loneliness is creeping up I have friends, lots of them but some have moved on recently. I also can't get out much ony own. I get access to work which helps pay for taxis to work but I can't just socialise when I want. My husband works shifts so I can feel a bit Billy no mates.

My biggest panic is traffic sometimes if I do walk to a shop because I have trouble judging traffic speed and distance even though I don't try to cross roads it spooks me. This has got worse since getting taxis to work which does keep me safer but makes your world a little smaller.

Not driving isn't too much of an issue, I was learning for forever during my seizure control period and spent over £5000 and 5 years learning and failed 5 1/2 tests so it's not like I missed out on much in fact it's saving me money. Plus hubby drives.

But that's on a bad day on a good day I am just full of life affirming arse kicking awesome. Unless I am wearing the tinfoil hat and thinking I am being posioned.
Q
 
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QueenieKP

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Oh and my words losing / forgetting my words has me in perpetual fear that the Univeristy of Kent is going to take back my English degree.

Oh and being referred to occupational health not when there is a problem, but when you have laboured on, sorting the problem out, got it sorted and some twonk of a middle manager refers you again for the 3 rd time when thinks that we're supposed to be put on place from the first one a year ago haven't.

Sorry I had a proper lil rant lol, probably needed a venting. And breathe.

Q
 
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