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rosanna1980

How Do You Cope?

I was diagnosed 5 months ago and I'm not coping well. My family insults me and refuses to educate themselves on my condition (they assume it's "common sense" and they already know). So, I've found that it helps to cope with pills and alcohol, cutting, journaling, etc... What are some ways you cope when you have no one in person to talk to and are constantly insulted and let down by people who claim to care about you?

Comments

Re: How Do You Cope?

Why exactly do you feel insulted and put down?

Re: How Do You Cope?

My family insults me all the time. They are getting tired of helping me out and feel i'm exaggerating. They know nothing about epilepsy and refuse to read and find out, even though i've asked so many times. They say things like "just get in your car and go find a job!". They know I can't drive or work. But, they talk to me as if i'm just pitiful. I'm sick of it.

Re: How Do You Cope?

when i was first diagnosed in 2008, I was told by my neurologist that I was not to drive, etc.. all the safety precautions.  My state requires only that you voluntarily turn in your license and/or withhold driving UNLESS a physician does deem you to dangerous and files a legal petition.  Otherwise, the physician is only to warn and advise.  The first, second, and third Neurologist has warned (all residents in a teaching hospital).

"the family" decided that this was too much of an inconvenience, a burden, an obligation on them.  So, the 3 family members I have that I would have to rely upon - primarily - to assist... all said to me "you can drive.  Just get in your car and go anywhere you want to go.  You must work, you have no choice, we are not going to tote you back and forth everyday and we are not going to assist you.  So, you are going to have to keep working and you will continue to drive everywhere you need to go because we will not be obligated to try and figure, or assist you, everyday to get back and forth.  If you "feel" one of your "spells" coming on, while driving, you immediately stop or immediately pull over and stop, even if you are in the middle of traffic, you stop or pull over, do you hear?"

You know what?  Only on 3 occasions for which I had a seizure while working, did they come to pick me up and take me home because my employer refused to allow me to drive myself home.

They used to not believe that I had seizures because for the most part, no one "sees" them.  It's just me and my teenage daughter.  She has seen many of them, or have caught me at the end of them.  The rest of the family has not.  My previous employer (was laid off in January, partly due to the seizures) witnessed 3 in 1 year.

It wasn't until my previous employer had the ambulance called with 1 seizure, and my elderly Dad actually witness 1 himself... that anyone, outside my daughter, believed me.  Course, that doesn't urge them to assist.  However, I do tend to "ride" more when we all go out and luckily my daughter now has her driver's permit, so she does most of the driving.  Yet, for the last 3-4 years....

Long rambling but, your reply/post sparked something and well.. I wanted you to know that you aren't alone in this... you really are not.

 

 

Re: How Do You Cope?

Thank you! I think a huge part of their insensitivity is that they've never seen one. I'm almost wanting one to happen in front of them so they'll believe me. This just isn't good.

Re: How Do You Cope?

I feel the same way sometimes . I think that if people would just see me have a really bad one , it would change the way they all seem to not care. Anyway, don't let that stop you from being happy . Do everything that is in your power , I will too . Lately I have been letting myself gain weight but today I will make it day one and begin to treat myself better . Having had seizures makes people around me not respect me much and think that I'm weird . I do have an elliptical and a treadmill so I will exercise today and eat healthy - I can't change a lot of things in my life - however, I can and will get my butt in gear today . I hope that you do the same - Believe me, I know how much it sucks to have seizures , just hang in there please . Do today the best you can and I will too

Re: How Do You Cope?

I live in California and they have taken my driver's license away . I don't have family or friends nearby to help me. So, I'm force to drive even though I don't want to. I live in a rural area where there are practically no buses and the closest grocery store is 5 miles away . I usually have one seizure a day and after it passes I will get in my car and go do the things that I need to do really quick . I would like to see more support from friends and family but is not there. I feel very alone and sometimes I do get angry when I see my children helping others and not me . My husband works long hours and is almost no support either . Lately things have been getting very sad for me . My oldest son lives and works far away , my middle son won't mind me and part of it is because I'm weak . What I go through on a daily basis makes me pathetic and stupid in his eyes. So, there is no respect for me . My daughter is 15 and the one that helps me the most. She is kind and helpful , however I don't want to put all of my problems on her, I just want to get well , be independent, be happy for a change. I have no friends because my attitude has gotten to be one that is very depressed. I'm a depressing person to be around. Is hard for me to see the bright side of my life . Anyway, all of that to say this: hang in there, don't give up. One day we all might just get up and no more seizures , it could be today the day . And also know that you are not the only one

Re: How Do You Cope?

What are you having difficulties with? Forgetfulness? Tiredness? Feeling different than other people, as in "lesser than"?Dealing with limitations?

Re: How Do You Cope?

Rosann, You are in a very painfully difficult position.  Have  you ever checked out the Epilepsy Foundation (EFA) website? (www.epilepsyfaopundation.org).  It contains a lot of basic info on epilepsy as well as provides advice.  This can help you educate your family.  Good luck,

Gandalf

Re: How Do You Cope?

Here is a link to a really good book on TLE:

http://www.amazon.com/Seized-Temporal-Epilepsy-Historical-Phenomenon/dp/...

When I read this book I learned a lot. And I didn't feel as alone because things that happened to me started to make sense. It brings a little relief knowing that you are not the only one experiencing these things.

Re: How Do You Cope?

I started to have seizures only when I am sleeping 2 yrs. ago. I was taken to the hospital, had all the usual tests, EEG, MRI, CT scan, all came back normal, had blood drawn, and was given Dilantin 100 mg 3xaday. No dr.s have really told me what type of seiz. I have or why I am having them. 

I did my own research on the Net, and came to the conclusion that I have Nocturnal Seizure Disorder. It is a type of grand mal seiz. that only happens when the person is asleep. I have all the usual symptoms of grand mal, my face and lips are blue and I stop breathing (I have been told this by my boyfriend who has seen me have seiz. in my sleep), I have tongue bitten, peed pants, weak legs, pounding headache and extreme nausea. I might also have another type of seiz. called Abdominal Epilepsy. Because months before I had my first seiz. I had stomach like flus at least 5-10 times a month. I would have a nauseated stomach, but I would be hungry still, eat and then throw up later. Dr.s don't really think Abdominal Epil. exists cuz it mostly affects children, and they don't always have all the symptoms of epil.

Right now I am not taking any meds. After taking my seiz. meds for 2 yrs. I have noticed that my memory was getting bad. I found out that seiz. meds cause memory loss and I refuse to take them anymore. I don't want to lose my memory any more than I have. So far I have had 2 seiz. since I have gotten off my meds. To date I have had 15 seiz. since 2 yrs. ago. It may be wrong for me to get off my meds. but I would rather suffer with seiz. than lose my memory.

I just wanted to tell all you people who have no support from family and friends, that you are not alone. Don't ever give up and think you are less than somebody else just because you have seiz. Make your family understand what you are going through and make them understand you do have seiz. Keep on insisting it and have your dr. call them and talk to them.

They have to learn about epil. and seiz. so they know what to do for you if they ever witness you having one. Knowledge is power. Keep on fighting for yourself and never give up.

Good luck to all and peace to all.

rebmil

Re: How Do You Cope?

I appreciate your comment. Like you, my MRI, EEG, and CTscans were all negative. Doctors have no clue why I'm having seizures, don't seem too interested in determining the exact type i'm having (other than grand mal and noctural) and honestly don't seem too interested in finding any treatment beyond meds. Sigh. My memory is shot. When I can afford it, I am going to look into a more wholistic approach.