does anyone else feel the same?

[reynoldsEp123]

My E. Ive recently had surgery on my right shoulder due to my Gml'S. Its made it very hard to go back to work. And some days I just want to disappear. I used to like drinking socially but this definitely triggers seizures. Ill admit i used to use recreational drugs now and again. But these never brought them on. Ive since stopped but sometimes I just want to throw caution to the wind and stare into every strobe light with a beer in my hand and the other giving the finger. Sometimes I cry, sometimes I scream as loud as I can. Is this normal? Sometimes I just want to leave and not come back. Just walk away from it. I know I cant. But thats how I feel. No one understands, or seems to try. They tell me to cope. Not looking for pity, I just want people to know what I go through on a daily basis. The fear, the lethargicness. The emotional rollercoaster that is my life. I know it could be worse, but im so tired of asking for help from everyone. My parents, my brother, my friends. Onx e my roommate found me naked in the bathroom after having one. Im fucking tired of it. I feel like I burden them. But the state doesnt qualify it as a disability, so every time I have one and cant drive for 3 months, it gets hard. And sometimes, I get depressed over it. Its hard not to.im always tired from the meds. Even though im still covered under my parents insurance, I still cant make ends meet. Even the compass are racking up. So what happens when I turn 25/26? Am I just fucked? I hate it. I just hate it...bad day.


Oh...and this condition is a paradox.


Im on 2000mg depakote/day.

 

[Fedup]

reynoldsEp123

Its ok you are not on your own, all of us would love to give epilepsy the finger. I have cried about it myself and there is nothing wrong with that, it can do you the world of good, the depression that can go with the medication is hard to deal with and the thoughts it puts in your mind about you being a burden are all WRONG, VERY WRONG.
This is not an easy life and it does not get easier when you throw in epilepsy, the fear which grips you of the unknown and feeling alone but know one thing YOU ARE NOT ALONE there are a lot of others who feel the same as you including me. I know and so does everybody else here that you do not want pity nor are you looking for it but like you said its hard for others to understand and its hard to explain.

The emotions you feel are real to you and mean something, yes it is a roller coaster ride but then its a roller coaster that has not meet you yet, its in for one hell of a surprise when you get on and enjoy the ride. Enjoy you say, what kind of crap is that, well its simple, epilepsy is not who you are and you are not going to let it take you over, it does not decide who you are, what you are, it does not decide all the good things you do. YOU DECIDE ALL THESE THINGS NOT EPILEPSY.

Yes it feels like you are thrown by the way side but that does not mean you are not getting back up to fight again and again and again until you WIN. Yes you get depressed, you get tired and angry, it seems like its all too much but its not, you are stronger and better, you will fight this for you and you will fight for your own peace of mind.

Is this condition a paradox, maybe but its still not taking over your life, its yours and nobody else's.

 

[reynoldsEp123]

Thank you so much. That really helped me. Its a cycle and it gets daunting. But I also know deep down youre right. Ill bounce back. And eventually i will have another. The cycle repeats. And stress being a trigger, when e in itself adds so much.

 

[Fedup]

reynoldsEp123

I only told you what you already know, your right its daunting but you get through this and you are among people who understand and will try to help you in any way.

 

[reynoldsEp123]

I just talked to my brother about it since he picked me up from work. I feel like he berated me on it. Saying its all in my head. To just change the way I think and to stop wanting to do the things I used to. And it really hurt...kinda still does

 

[Fedup]

reynoldsEp123

Of course it hurt and you probably think that people do not care especially those close to you, but nothing could be further from the truth. Its like you said people do not understand, to a lot its like having the flu "get up and walk around you will be ok" "think positive its all in your head, think positive and you will be better" I have been told that as well and felt like you. But this is not a flu or anything like it or near it, its something completely different which others do not understand and trying to explain and make them understand can take as much out of you as a seizure or you feel like your banging your head off a brick wall, repeating yourself and asking "is any of this sinking in". There is no harm in wanting to do the things you used to do is a matter of fact are you sure you cannot do them, now you do not do them if they are going to put you in harm or somebody else but since when are you not able to do things. You decide what you can do and cannot do, you use common sense to tell you if its safe or not for you to do. There was a time when you would never be allowed to leave the house then somebody did. Your Brother means well but has a lousy way of saying it, thats all.

 

[KittyI]

Hey, so sorry to hear how you are struggling. What you are experiencing is so tough and its not wrong to feel angry!

I'm 22 and I'm being investigated for epilepsy. My entire life has been taken over by hospital appointments and scans. I'm so tired of being in hospitals and tired of getting examined by doctors while everyone I know is out living their lives.

I can't drink because it makes me have really horrible seizures. I've given up performing comedy because I can't even speak clearly anymore. I lost a job I loved because I was sick so much and I have to do my last year at university part time, losing all of my funding. But I'm too sick to do it full time and don't really have a choice. It sucks, epilepsy is an awful thing to go through, it makes you lose control of everything.

What I'm saying really is its really hard and upsetting and isolating. But it also makes you stronger and more resilient and I think a better person. Since getting sick I think about everything different, I connect with people more and I appreciate all the good things in life way more. It's made me realise how lucky I am and made me so thankful for so many things. It's made me enjoy life more and feel that everything is really special.

But then no matter how positive I've been feeling, I have a really bad day. I think you need to allow yourself bad days, you need to feel down and just rest and allow yourself to grieve. Because you are grieving in a way, for your old life and for things you can't do anymore, and thats natural. You have to let yourself work through that stuff, dont ever feel bad for feeling sad.

Also, talking to people experiencing what you are is so helpful. Most people can't even begin to understand what you're feeling, so forums like this are great. Come here and rant and talk to people, its so helpful.

I take it one day at a time, I feel like I can get through most things one day at a time. If today is a bad day, then its just a bad day. Tomorrow I'll get up and start fresh.

Being sick has made me realise how strong I am, and its only made me stronger.

You are strong too and you can get through this! Be kind to yourself and let yourself grieve. Tomorrow you can start again

 

[reynoldsEp123]

Thank you kitty and fed up. Very inspiring g words. And I guess hearing im not alone makes a world of difference.

 

[Cint]

I just talked to my brother about it since he picked me up from work. I feel like he berated me on it. Saying its all in my head. To just change the way I think and to stop wanting to do the things I used to. And it really hurt...kinda still does

Tell your brother, "My BRAIN IS IN MY HEAD and my seizures are a BRAIN THING!
So YES! It IS ALL IN OUR HEADS!" And folks like him are fools for not trying harder to understand. Did any of us ask for it? No!

I've struggled with E for over 30 years now and have suffered thru many of the same feelings you mentioned, reynoldsEP. Sometimes those feelings lie waiting, festering, until someone says something that infuriates us because they have NO clue. But eventually it does become easier to deal with and we learn to ignore their ignorance.

 

[Belinda5000]

I've had E more than fifty years and I've only been able to work three jobs.
I'm on SSDI I've never driven and I take public transportation to get back and forth to my appointments. My E has put me through the test of time. I was dx'd when I was two years and I've known nothing else. I've been lucky that I've found a great spouse who has always been there for me and he also has epilepsy, but his surgery in 1972 stopped his seizures.

 

[trippergreenfeet]

Hey reynolds, hang in there brother, I'm picking up what you're putting down.

Been having seizures for eight years (40yrs old now). Misdiagnosed for all but the last 18 months, even told by one doctor "it's all in ya head, nothing can be done about it" before hitting my butt with the door on the way out of his office haha.

Lost my job, I was a contractor in the mining game for near on 20 yrs travelling the world with the job. License gone, no longer surfing, and that is my lifestyle man, surfing. My world has gotten very small compared to what it once was...that is very hard to reconcile.
Had to stop flying radio controlleed planes and helicopters too, the whole spatial dimension of a craft in the air would fizz my brain and send me into seizure...nothing like trying to land a giant scale plane while laying on the deck with transmitter in hand mid seizure, but there was a lot of $$$ in the air...amazing what the brain can multitask while the signals are jumbled.

The tyranny of distance and reliance - I live 30km from my GP and 100km from my neuro, that in itself is a challenge when living out in the sticks as I do. At least I've got a bike, helps keep the fitness up now I'm no longer an ocean dweller. Good set of weights help too in that regard.

Relationships, now there is a doosy...my partner of 15 years is all heavy on me for no longer working...she just can't get it through her head that no mining company is prepared to take the risk having me onsite...she's just pissed that the money is no longer rolling in like it once was, only 50% of what it used to be...thanks to insurance, yew. Yet she is not prepared to take up some of the slack, she took a couple of years off from her profession just to chill but now the shoe is on the other foot she is not happy...some people find it hard to adjust I guess, heck look at us having E and adjusting to that.
At least my two girls have been great through all this, most understanding I've got from anyone regarding the issues of having E, and from a 9 and 14 yr old too...gotta love untainted minds.

I do fear that the worst is yet to come with my missus, I know I've become an uneasy partner to live with (bloody med swings) but she seems to be getting harder the more seizures I have, and I have em frequently...11 last month, 4 already in June.

Plus I've just got back from my neuro visit today...Keppra here I come, on top of carbamazepine and valproate. Oh, have a good cry when all this is getting ya down too, I did today at the neuro, kinda shocked him but it is what it is.

And if ya still having trouble at the end of a day, have a read of some Taoist or Buddhist philosophy...not pushing any religious context here but those monks really know how to put the self in perspective without the "ego of poor me". Those last few words may sound harsh but it really is our own ego's loss of what once was that hurts through the adjustment of living with epilepsy.

Onward and upward mate, it's the only way.