May I cry?

[seizures4ever]

To those who take the time to read this, bless you.

I'm sick and tired of being told I'm such a "positive" person. I don't want to be anybody's "role model" or "hero" because I deal with everything so well.

I HATE EPILEPSY! The seizures, the side-effects, and all of the dam* limitations it places on my life!

I have a Master's degree. I wanted to work with children who are abused and/or neglected. Instead, I'm on disability! It took me eleven years of clawing my way through school to finally get my degree.

My seizures are atypical...during my complex partials, I don't simply stare and drool. Nope, not me, I urinate, deficate, undress...you name it, I've done it. Most recently, I climbed up on the counter at Subway. Once, after getting completely dressed for work, I took the lid off the toilet tank and stuck my arm in! I've also "had the pleasure" of brushing my teeth with toilet water during a seizure. Nobody understands! I have done so many more embarrassing things that I absolutely cannot write...I can't think about them or I wouldn't get out of bed. I have bled and bruised and burned my body in a seizure too many times to count.

I have 10-20 Simple partial and/or complex partial seizures a day. I am on four anticonvulsants; I'm a walking zombie-I am not a candidate for surgery and I have the VNS already. I keep getting passed from doctor to doctor. The congenital "scar" (genetic mutation) on the right side of my brain touches every lobe except my frontal lobe. I am just a science experiment.

I am stuck at home all day with the baby. My husband works 10 hour days. When he does get home, he is too tired to talk or do anything. All of my college friends have gone their separate ways...I feel like I am alone in prison.

Our new house is too rural! I have searched the internet for a local "mommy and me" group or something similar, but I haven't had any luck. My husband and I have talked about selling the house (we've only been here eight months), but no one can sell a house in this economy. And, even if we did manage to sell, we would make no money for a down payment on a new house. So, I'm stuck here for now.

Thanks for letting me vent. I've been crying for two days. I just feel alone and misunderstood. Things will be better tomorrow.

-Julie

[wowthissuxass]

but of course.....

I cant say I understand your situation, because we all have such different situations, but I surely understand your frustration. Don't feel bad about crying. I am a 30 year old father/husband who has always been able to be the strong one, and be there for everyone. Since my diagnosis/seizures/keppra nightmare, i find myself crying all the time. At a movie, tv show, or just for no reason.

If I am learning one thing, it's don't try and hold it in....just let it go. Get yourself to a quiet place, and just let it out. I am sure this doesn't make you feel better, but atleast you know your not alone.

Good luck!!

[morgan381]

You're not alone. We all have to wage a daily war against epilepsy. The important thing is to not let it win. We ALL hate it...

How rural of an area do you live in? Do you have a cow pasture for a neighbor? I do (I'm serious). Things are much harder when you feel even more isolated than E makes you, I know. Have you looked into mother's day out programs? I know it's not mommy and me time, but it would give you a chance to just do something that makes you happy for a few hours a week, to be selfish for a change. I know it's hard having E, staying home alone w/ baby...you miss conversations that don't involve the word "poop".

I hope you're feeling better soon. In the mean time, you have the right to cry and feel sorry for yourself. Just remember, you are not alone...

[Georgiagirl88]

Hi Julie,

I am really glad you popped in here. You can certainly unload all of your pent up sadness, frustrations, anger and anything else you need to unload!! We are all here to listen to one another and help and support each other when we can. I am truly sorry you are going through such a low point right now. I think we all have been there at one time or another and some are still going through it. I am hopeful that maybe someone here will have some suggestions for you. One thing that comes to mind to me is..not sure if you belong to a church or any group type situation. even nearby schools??.but that may be helpful in alot of ways..meeting friends, children for your little one(as you mentioned play groups) maybe even help getting around if needed. Or in your nearby town are there any groups that may be able to help? Just trying to think of ideas for you..Does your Drs. have any ideas that may be helpful? Also, Not sure how old your little one is, but do you think it could also be post partum along with seizures? Just a thought.. I had it with our first child for a short while and then I didn't with our second. Lord knows depression can absolutely go along with epilepsy. I always feel very sad/depressed after my seizures for a few days.There are multiple posts here about this. Great place to unload as well!!
I can't say I completely understand all that you are going through, because I don't...but I do understand being bounced from Dr. to Dr. and still no answers and feeling very helpless with. I guess there are so many things we all go through at different times in our lives and we feel so very low.. Just know it has to get better for you!! It is easy to say.."Stay Positive!" I totally understand that..you just can't feel or act that way when you don't feel that way. But it truly does help to try to change your mindset even if it's a little here and there. When I was really feeling terrible and had zero answers..I read a book about this and it truly did help me. Something just clicked. By coming here, that is your first positive step!!!
This group has been so warm,welcoming and helpful to me. I can't even tell you! Just a great place to unwind and chat with people that can understand some of what you are going through. Julie, I will keep you in my thoughts and prayers! Hope you join in the group and can find some solace here!! And maybe even some good suggestions! : )) Glad you are here!!

Take care and hope you feel better!

[RobinN]

Julie - I am an artist and I found an incredible forum with all artists. There are almost 150,000 members. I have met some of my artist friends in person, and am going to a workshop in a few weeks with a couple of them.
The internet can open your world up to work, education, friends etc.
Keep the faith. Kids do grow up, even though at times it feels like you are stuck in a tar pit.
Any chance you could get a book club started? There are gardening forums, and knitting forums... maybe we need to start a list of them (of course CWE is the best).

[seizures4ever]

How rural of an area do you live in? Do you have a cow pasture for a neighbor? I do (I'm serious). Just remember, you are not alone...

Yep Morgan, I have cows nearby too, and horses. The entrance to my subdivision is in a cow pasture! There are only two police officers for the entire county! I know this because my neighbor got robbed and all of the county's police came (including the sherriff) ...in one car!

Nope Georgiagirl, it isn't postpardum depression. My little guy just turned two.
I think it is "buyer's regret" plus my compounding health problems.

Robin, those are excellent ideas. Thank you for sharing them!

And Mr. Wowthis...thank you too.

Well everyone, the baby will be up in a few minutes (I can't believe he's slept this late)!

God Bless you all. And thank you for caring!

-Julie

[skillefer]

Hi Julie!

I'm sorry to hear about the depression...but I'm glad you came here to vent. That's what we're here for. You are NOT alone. As someone above mentioned, check out the local churches. Some of them have women's groups that meet during the week for moms. And they usually provide a sitter. Small towns can be great, in that the people can be very supporting. Give them a chance. But I'd start by checking out the local churches for women's groups, or if there's a book store, see if they have a book club. Just some suggestions. Hope they help. I'll keep you and your family in my prayers.

[montse]

I can understand your feeelings, I used to feel like that, my husband also works and arrives very tired,friends are gone...
But with the help of internet I have felt better, I live in the other side of the world, its far in distance, you can count on me.
I meet from time to time my epilepsy forum friends in Spain, and we call each other very often, I can not believe that the best fiends I ever had were found by internet
And many pople who live in big cities would like to live in a place like you, so small and quiet.
Take care.

[Loudmouth]

I know exactly how you feel. Although i live in a reasonable sized town, there are NO services for me here, I have to travel to the other side of my county ( one of the largest in England) to get ANY help...I dont even have a neurologist at the moment. It can be very isolating, and being here and talking to people who know what it's like to feel like this helps me immensly. if it wasn't for coping with epilepsy, I may have gone insane over the past couple of months where except for getting the kids to school I have been virtually housebound. I hope you feel like you can talk to us...and maybe soon I will post some of the REALLY daft/ odd/stupid/ weord stuff that I have done during some of my non-typical complex partial seizures...including stabbing my hand instead of a potato, buying mens pants in the supermarket when I am single and I only went in for milk, burning my bum on the grill...and YES, I do have scars on my rear end that take the form of lines as if I was a grilled steak...switching off EVERY socket in my kitchen, including my fridge freezer and ruining over £150 of frozen food...the list goes on and on after 5 years!!

[Loudmouth]

OH and btw, it gets worse...when I switched off all the switches I did the boiler too...only I didn't know it...I even called out an engineer as I thought the boiler was broken as I had NO MEMORY of switching the main switch off...the engineer cost me £175 for the call out and check, only to realise that this daft old mare had turned it off at the wall......what with the food AND the engineer, THAT was probably my most expensive seizure...£275 worth of damage!!!

[seizures4ever]

Thanks to the three of you for your replies!

I appreciate being in others thoughts and prayers. Your idea about bookclubs and churches is a very good one!

And some of my good "friends" are internet friends as well! It is comforting to be around a circle of people who understand, to some degree, your situation.

It amazes me that we can be in so many parts of the world, yet feel so close to one another in spirit.

Oh Loudmouth, Bless you for sharing. I needed to hear examples of others mishaps during seizures. Sometimes the embarrassment is overwhelming for me. So thank you for sharing (((Hug))).

I wish everyone who has responded the very best and a seizure-free week.

Lot o' love. -Julie

[sindrella1]

Don't depressed, we are all fightings to our life, we all are with you, don't feel alone, you are a great one, i appreciate you and pray for you. Don't think about your past, only trust on god and try to make your present better, your future will be better.

I pray for you all things will be better.

This is the best discussion area feel free to discuss with this community, you will be feel relax here

[TeeTees]

Thanks to the three of you for your replies!

I appreciate being in others thoughts and prayers. Your idea about bookclubs and churches is a very good one!

And some of my good "friends" are internet friends as well! It is comforting to be around a circle of people who understand, to some degree, your situation.

It amazes me that we can be in so many parts of the world, yet feel so close to one another in spirit.

Oh Loudmouth, Bless you for sharing. I needed to hear examples of others mishaps during seizures. Sometimes the embarrassment is overwhelming for me. So thank you for sharing (((Hug))).

I wish everyone who has responded the very best and a seizure-free week.

Lot o' love. -Julie

^^ You shoulda asked....I got my dick (can I say that mod's ?) out at a till in a superstore over here as I was paying for my stuff with one hand, and holding it in the other....yep, I WAS having a seizure at that time.....honest

I hope that brings you much to laugh about Julie, as depression and epilepsy do have a tendency to go hand-in-hand. You sound a very intelligent person, would it be possible to do any courses from home ?