HealingWell
Search Close Search
☰

HELP ME!! I CANT LIVE WITH EPILEPSY

Support Forums
>
Epilepsy
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/3/2007 2:58 AM (GMT 0)

  I've had epilepsy since I was one (1) year old due to a high fever. I am now in my mid 20s and STILL, I am uncertain on the right medication and dosage (right now, thankfully, this is the first time ever SEIZURE-FREE for 7 months with LAMICTAL (300 & 250) as well as with KEPPRA (500 & 500).

 

   However, aside of the frustration and sometimes feelings of hopelessness that I've had throughout my life, I think that throughout the process of finding control of your seizures, epilepsy brings MISERY to your lifestyle.

 

    Throughout my WHOLE LIFE (College years and next working), I've had rough times JOINING the world and getting the most out of it. All the time, DADDY (can you give me a ride), MOMMY (can you pick me up) -- but the worse of the worse is with SOCIETY. Imagine, at work, everywhere they say: * Where did you park your car? * If they know that I do not have one, they say: why don't you BUY a car ... that even if you do NOT have a job they STILL assume that yours is waiting there in the PARKING LOT. Otherwise, WHY don't you drive?

 

At this moment, I work. However, I have to take one (1) bus, walk two (2) blocks and next, take another bus -- That's why I bring my clothes and CHANGE -- it is TOO hot...

  I cant stand it -- can you help me? I do not know how to deal with this... so much that when they touch that topic, I may get SENTIMENTAL and maybe depressed.

 

* I dress comfortably (shoes and shirt), in order to WALK and because it is SOOO hot.

* Meanwhile, when I get into my second bus (I put the shirt that I want/need to wear and change from WALKING Shoes to sandals).

* Some coworkers have seen me crossing the street - dressed like this and know that I change).

     The bus drivers and them -- they LAUGH at me: I feel so stupid and inferior sometimes. Other times, they feel SORRY for me and they keep insisting =

                 DRIVE: buy a car (they think I had a CAR ACCIDENT that makes me now NOT want to drive.

 

SO MUCH PRESSURE from others (gossip, laugh at me) - SO MUCH = WHY ME -- always me Suffering. HELP me please... I need advice and Compassion.

 

       I dress comfortably, I walk, I sweat, I cross the street, I wait again -- sweating further. Meanwhile, the WORLD is in their cars, dressed NICELY and APPROPRIATELY, air conditioners, etc. I suffer and see other -- ENVY/INFERIORITY.

       Next, they LAUGH at me (because they know that I CHANGE CLOTHES).

        Next, DRIVE, they say. I hate heading out of work with them. I try to get there LATE and leave LATER. I can;t stand it = everybody smiles:says goodbyes in the PARKING LOT = they get in their DRIVERS SEATS and leave INDEPENDENTLY - mingles with the rest. Meanwhile, I walk to the bus stop (wait and sweat) , the rest LAUGHS at me and sometimes, FEELS sorry for me). HOW MUCH still?

 

HOW DO YOU DEAL with EPILEPSY being in such a world? I just cant stand it. I have to be CAREFUL (including what I wear - there can be WEIRD people sometimes in the bus. I just hated it!!! Where is your car?? In Houston, nobody can believe that one doesn';t have a car -- YOU DONT PERTAIN here. Imagine, what worse>>

   * my daddy dies - we moved to Houston.

   * my mom is depressed (I am the only one who lives with her).

    * I did not go to SCHOOL here.

    * Also, I have EPILEPSY

 

Can somebody help me? I need a friend for ADVICE AND COMPASSION.

Posted 8/3/2007 9:27 PM (GMT 0)

Hi Caroleena,

Hopefully I can offer you some advice and compassion. Epilepsy is not very well understood by many people and this is one of the reason that people are so horrible about it. Personally, I would simply tell them that you cant drive because your epileptic. If they want the gory details, then tell them. Epilepsy is something that you suffer from but it doesnt define who you are. Be proud in who you are and if people are small minded enough to laugh at you then I would ignore them as they are obviously not worth knowing. I know this is easier said than done, but after a while they will get the message.

I think its shocking that you have had epilepsy 20+ years and no-one has found a suitable med. Which ones have you tried? You need to kick your doctor into shape over this one.

If you want to email me, feel free... My inbox is always open

I hope this has helped

Darren

Posted 8/4/2007 5:53 AM (GMT 0)

Caroleena,

I am 56 years old and was just diagnosed about a year ago and do not have my seizures under control yet.  I get bored and depressed being stuck in the house and hate depending on others to take me places.  Now I feel bad for feeling sorry for myself at times.

You are trying so hard just to do what others take for granted every day.  You are just trying to go to work.  I agree with Darren.  I would explain why you are doing what you are doing.  It would be nice if some of your co-workers would at least be courteous enough to drop you at the bus stop.  I know that would feel awful in the morning to be rushing to go from one bus to the other and feel all sweaty when you finally get to work, plus you are probably stressed out by the whole ordeal when you finally get there.  I know I would be.

I know having epilepsy this past year has certainly changed my life.  I just hate to hear what it is doing to someone so young like you.  Keep coming back to the forum.  Darren is young and has a lot of wisdom for his age and we have some other young people also.  Let us know if we can help you in any way.

Take care!

Carla

Posted 8/6/2007 1:41 AM (GMT 0)

 Hi everybody --- thanks Darren and Carla for your nice sympathy & advice. It is wonderful to know that there are some people out there who can understand me. Not even my family does -- I guess it hurts them too much to listen HOW MUCH I can suffer (especially my mom).

 

    Well, now that you know what I go through everyday AT LEAST to go to work, I simply want to state that what really bothers me THE MOST is to know that others who know me LAUGH at me & GOSSIP about it (especially WHEN and AFTER they've seen me WAITING, WALKING and CHANGING)--- Sometimes, they feel SORRY for me.  Carla, there is one person who lives close by to me and I think that she could PERFECTLY pick me up (she even told me). But see, the thing is that I want to go everywhere and do everything INDEPENDENTLY. Hence, rather, I try to avoid those favors (even though, deep inside I am thankfu). I've been through it my whole life. I cant stand it anymore - that every time I go out, I have to take the PASSENGER's SEAT of somebody's CAR = I am stuck with the choices that that driver makes. In the end, sometimes, in order to feel better, I look around and say to myself -- at LEAST I have two (2) wonderful and healthy legs.... not like this guy in a WHEELCHAIR.

Next, I still think that if I tell them that I have EPILEPSY, they will treat me with an attitude as if I were a RETARD/SLOW (this is one stereotype of EPILEPSY) and hence, they may not trust me ANYMORE on new tasks to come about. I am LEARNING more now at work -- but sometimes, if I am slow to learn and get it: they may immediately assume that is EPILEPSY vs. LACK of Experience. I still dont feel that PROUD OF MYSELF to let them know that I have EPILEPSY. Next, everytime they see me -- they will probably feel SORRY for me.

 

THANKS for you kind words -- hope to HEAR FROM you soon!!! :-)

Posted 8/6/2007 6:08 AM (GMT 0)

Caroleena,

I think maybe you are being too hard on yourself.  We all have to ask for and accept help at times.  Boy, have I learned that this past year.  I'm wondering if you just shouldn't let your co-workers know about your epilepsy and see if they don't show more compassion.  As it is, they are probably just wondering why you are changing buses and changing clothes as you go to work and they are probably also wondering why you are not driving.  I would talk to your supervisor about it first and let him/her know that it does not effect your work at all, but that you just felt you should let them know about it. If you feel comfortable with the supervisor, you could let him/her know that you are coming to them now because of the way you have been treated and you wanted to let them know the reason you do the things that they laugh at you about.  I would casually mention it, because you are being harassed in the workplace and if the supervisor is smart, he/she will put an immediate stop to that.

Caroleena, you are obviously a very strong person, I feel like you can handle this by talking to your supervisor, or better yet if you have a Human Resources Department or Manager, that would be your best bet.  If you can go through what you do every day just to get to work, you can take this on.  I have faith in you.  You are woman!

 It would really make your life easier to take that lady up on her offer of a ride to work.  You could pay her something for gas and that might help her out also

Let's see what Darren thinks about this.  He has dealt with epilepsy a lot longer than I have.  I just hate to see you going through all of this just to be able to work, something most people complain about having to do.

Take care!

Carla

Posted 8/6/2007 9:51 AM (GMT 0)

"Let's see what Darren thinks about this." --> So there's no pressure here or anything then! tongue

In my opinion, anyone who thinks epilepsy makes you slow or retarded needs a good kicking. (Not that I condone volience of any kind! Just a verbal kicking lol) Epileptics brains (In 99% of cases) hold exacly the same functionality of those without epilepsy. If someone had lost some functionality and they have epilepsy, then chances are its not the epilepsy but some kind of damage to the cortex or inner structures. They may not even be able to spell epilepsy, let alone know what it is and ignorance is a brilliant breeding ground for discrimination. If you take away the ignorance, you stand a much better chance in fighting discrimination. Explain what a seizure is, explain what happens during a seizure, explain how it feels etc, etc... (If you want any info, give me a yell!) Tell them EXPLICITELY you dont need people to feel sorry for you because EPILEPSY IS NOT A DISABILTIY. (If it was I would be claiming from the state, since disability pay is more than I get busting a gut in a supermarket!)

The independance issue is something I hear very clearly. I used to have a car. But 14 months ago, I crashed it after having a seizure. (I dont believe it was a seizure, but thats what the docs put on my medical records so I have to go with it). I lost all my independance in losing the car. I now get lifts back from work and I have to walk into work. (And like you, I have to wear a different set of clothes and get changed because I sweat a lot too). All I can say is that, independance doesnt come on 4 wheels. You still get to work by yourself dont you? You dont get lifts do you? (Unless I missed something!) So you still get to work BY YOURSELF. Isnt that indenpendance? Having a car is convenient. This is the way I have come to look at it. On the bright side, you have 7 months sz free! How many do you need to get a driving licence? (It sounds a bit like collecting points! lol)

Your Personnel department should be informed purely from a risk assessment angle. At the end of the day, you could have a sz at work and they need to make sure that they are aware of how to deal with it. (They should know anyway, but I'd tell them anyway!) As for people treating you like your slow, keep a watch out for the next time they have a problem understanding something... Then ask then if they have epilepsy! (Its not a very social response, but it would make me feel better)

Educate them is my answer. (And if you want any info before you start educating them, so you can look SUPER clever, give me a bell and I will help... I know alsorts off useless stuff!)

I hope this helps and that I was able to perform to a satisfactory standard! tongue

Darren

Posted 8/7/2007 8:31 AM (GMT 0)

Hi Caroleena,

I had epilepsy as a baby but outgrew it when I was about 2, 5 years ago when I was almost 25 the epilepsy came back.  No one is sure why I got epilepsy again. 

I was never interested in getting my licence as I live fairly central to town and walk to most places but also catch buses or taxis. I also felt that a car was a big expense to have especialy when I am currently unemployed. My neurologist has told me that if I ever wanted to get my learners permit then I need to go 3 years without having any types of seizures. I am an Aussie so the requirements for a person with epilepsy to get their licence might be different in other countrys.

People often ask me why I don't drive which sometimes bothers but I still be polite and answer. If I don't know the person well I just say I don't see a need to have a car as I can walk every where or I think cars are too expensive (with the cost of maintaining them & petrol/gas). If I know the person and trust them then I tell them that I have epilepsy or have a medical condition.

Posted 8/9/2007 4:42 AM (GMT 0)

Hi everyone, nice to hear from you... thanks for the support and advice. I share the advice of the last reply (new member). That is, to FIRST say that I have EPILEPSY with people who I trust. However, in order to do that, I think I'd actually want a note from my doctor indicating that I've been SEIZURE-FREE for almost 7 1/2 months.  

 

It's also so much pressure. I think there is ONE particular person at work, who likes to PICK on me, when I'm not there. She keeps telling others, what I do: walk, wait and CHANGE clothes (she tries to make jokes out of the shoes and shirt that I change from).

 

I don't know how to deal with that. It's a lot of PEER PRESSURE, it makes me FEEL STUPID/INFERIOR and what I hate the most is that she shares it in order to make JOKES out of me and my circumstances and overall, THE REST follows her and LAUGHS at me. I consider it so IRRESPECTFUL, that it now makes me feel INFERIOR and avoid having LUNCH with them.

 

How would you feel? How would you deal with it>> for your one PERSONAL well-being??

 

 

take care and thanks for your SUPPORT.

Posted 8/12/2007 9:32 AM (GMT 0)
It sounds like this ONE PERSON that you talk of needs to be sorted out. Do you have a line manager that you could talk to about this? When all is said and done, she is bullying you and that is something that must not be allowed to continue. If you dont have a line manager then maybe your union rep can help, if you have one? They need to be taken down a peg or seven and i'd gladly be the person to do it! lol

Posted 8/12/2007 1:03 PM (GMT 0)
Just tell that old gal to shut her trap!
Posted 8/13/2007 3:52 AM (GMT 0)

Caroleena,

Everyone is pretty much giving you the same advice.  Having epilepsy is nothing to be ashamed of.  I think the sooner you either stand up to this bully or tell the person in charge that you have epilepsy and that is why you do the things you do and you are tired of being bullied in the work place,you are going to feel so much stronger.  Right now you are giving her your power.  Please don't do that.  I think when everyone finds out about your situation, they are going to realize that she is evil and they will treat you with the respect you deserve.  Set yourself a day and a time and go and do it.

I think you are a very strong person.  Just look at what you go through every day just to get to work.  You can handle this and you will feel so much stronger after you do.  As a matter of fact, if you set a day and time, let us know and we could all stop what we are doing and say a prayer for you at that very moment.

Caroleena, we all care about you and don't want you to have to take that crap for another day.

Take care!

Carla

Posted 8/13/2007 8:43 AM (GMT 0)
Carla is right, you will feel much better for standing up to her because you will be taking back your power. I believe you can do it, as do many people on this board. Being epileptic is nothing to be ashamed of. Stand up to her and put her in her place
Posted 8/13/2007 3:57 PM (GMT 0)
Hi,

Do you have a trustworthy friend to confide in? If not, you need to make a relationship with someone nice. My mom has had epilepsy since about age 12 due to a car accident when she was three. I have Crohn's Disease so I know how hard it is to feel alienated and to have a disability setback your life.

My mom has never driven, but I always encourage her to go down the street to the church and join a women's group to make some friends. She's had one lady friend who has been understanding throughout the years. She calls my mother very often just to say hi, how are you?

about work, if what this girl does bothers you, then you need to tell her and be firm, but not rude. You don't need to give a speech, but tell her not to do it again.

If that doesn't work, then I'm not sure what the laws are in the States, but I'm pretty sure you have rights about feeling safe and secure at your job. People picking on you or centering you out (especially because you have a disability) deserves for them to be fired or reprimanded by a manager in my opinion. Do you have a state number to call to find out what can be done for you? I don't want this girl(s) to get in trouble, but she needs to be put in her place.

Best wishes, Roni
Posted 8/20/2007 11:56 PM (GMT 0)
Hi,
I've had epilepsy since I was 2 .I'm now 45 I just gained control for the 2nd time in my life.
E is something u need to accept not be ashamed of .
I can say it was rough having going through school but that would be for me or anyone. There's not much difference with us than anyone else except when we have a sz for a few minutes or seconds and I can understand it being hard for anyone at any age.

I've never driven and worked very little and I'm med resistant allergic most drugs. Thats life though.I've been on 19 different AEDs until I found something to help .I'm on 5 drugs weaning off 1 and I have VNS.
yeah yeah

Wayvonne
Posted 8/24/2007 8:34 AM (GMT 0)
HI Caroleena,

I havnt heard from you for a while and was wondering if everything was OK? Please let us know how you are getting on.

Best Wishes

Darren

Posted 8/26/2007 2:24 AM (GMT 0)
Hello Caroleena! I'm new here, but was reading your post and many of the responses. I didn't read them all because...believe it or not...I have to pick up my daughter from work soon because she too has epilepsy and is unable to drive at this time. There are two things that I wanted to tell you if you don't mind. The first is this...

It is many times a blessing for someone to help out another! I feel so blessed to be in a position to help out my daughter getting from place to place (although it isn't always convenient...). I have also given my services of helping others that may need a ride here or there. One woman out our church needed to go to her Drs. office a few times and even though she lives 45 minutes or so away...I was so blessed that she asked for my help! Sometimes people feel that they have no purpose in their lives...or at least very little purpose. So...anyway...my point is that if someone offers to help you...or if you need help and need to ask someone for help...allow someone to be blessed by helping you out. You will get the assistance that you need and they will end up feeling really good about themselves for helping someone out. (I hope some of that made sense!) eyes

The second thing I wanted to talk with you about is the hard time some people are giving you. I had epilepsy from the 1st grade up until I was in my mid-twenties. Thank the L O R D...I outgrew it! I am one of the lucky ones and I pray that the same happens for my daughter. In the meantime, I remember the jokes, etc. when I had epilepsy. And I see how my daughter responds when some of the kids at school pick on her a little bit about her epilepsy. And they ALL know about it because she had a major seizure last year during her English class. Anyway...I like what Carla had to say about giving someone else your power. She is very correct and I tell my daughter this same thing all the time. Only YOU can "give" away your power. Only YOU can decide to allow someone to make you feel inferior or not. Caroleena, you should be PROUD of who you are! KNOW that about yourself. You are doing what you have to do to not only succeed, but to survive! Not everyone can do that. Many would have quit by now. Here is something else that I tell my daughter all the time and it has helped her many times. When you think of this girl who jokes around and laughs at you with the other co-workers...think of what would make her do that? Happy people....people with healthy self-esteem...self-confidence....etc., don't ever feel the need to put anyone else down! Many people that are NOT happy with who they are, they can only lift themselves up by putting others down. Recognize this about this person. Try to see why she does what she does and you will take the power back! And from then on...nothing she says or does can really harm you in any way!

Anyway...again...be proud of who you are and all that you have had to overcome. And know that you are loved and cared about. My compassion to you Caroleena! Stay STRONG!!!

Karen
Posted 11/24/2007 1:22 PM (GMT 0)
Hi LJames,

I have deleted your posts on the grounds that you are not supposed to post contact information for yourself (E.g. Email address) for your own safety. There is software out there that scans forums looking for peoples email addresses which is why we encourage people to add it to their profile (Which I see you have done.) Also, we dont allow people to ask others for contact information (Such as messenger addresses).

Regards

Darren

Posted 11/28/2007 1:45 AM (GMT 0)
Anyone who thinks epilepsy makes you less of a person, or makes fun of someone who has it is not even worth recognizing.
Posted 11/28/2007 10:58 AM (GMT 0)
Taz,

Whilst I appreciate you have an opinion and we welcome people sharing their opinions, it is not ok to verbally attack other members in the process... this is why I have deleted your post.

Darren
Posted 12/27/2007 8:18 AM (GMT 0)

I'm late coming to this forum, but Caroleena's post was so heartwrenching and yet so common to all of us epileptics in varying degrees, that I wanted to reply.  I have simple partial seizure syndrome, and have experienced 4 gran mal seizures in my life.  I am 56.  Despite having 3 gran mal seizures from ages 11-16, I was first properly diagnosed as having epilepsy at age 43 after suffering another gran mal seizure out of the blue.  Since that time, I have experienced seizure symptoms daily that accompany my condition.  I am extremely sensitive to seizure control drugs and have tried them all.  Only a combination of Dilantin and Lorazepam helps control my symptoms.  As many of you know, Dilantin can have bad side effects.  I lost my law practice due to its adverse affects on memory and mental sharpness.  I no longer work and cannot drive.  I am now housebound due to almost constant seizure symptoms and it is fair to say that epilepsy has significantly disrupted my family's life as well as my own.  I refer to epilepsy as the "hidden affliction," despite the fact that as many as 9 million Americans are epileptic.  It is not well publicized or understood.  Gran mal seizures can startle or even frighten those who witness them.  People can be dismissive, rejecting or even cruel about things they do not understand.

Obviously Caroleena the unkind co-worker is abusing you due to her own inadequacies, not yours.  No one wants to be out of the mainstream, and we all fully empathize with your anguish.  It sounds like you are particularly sensitive to how you perceive others to respond to your condition.  Other posters are absolutely correct in stating that you need to let your co-workers know that you have epilepsy, and THAT is why you do not drive and must bring changes of clothes.  But not everyone will embrace your situation, and you have to face up to that fact.  So, you need back-up.  If you can afford therapy, even if it is just once a month and conducted by phone, it will help greatly to have someone in your corner to whom you can open your heart and complain and cry and say whatever is on your mind.  The therapist will help guide you to insights that may ease your pain.

Please understand that there are millions of people in your boots worldwide.  We ALL suffer in a great variety of ways.  Unfortunately, our malady is caused by the least understood organ in the body and most of us have unique situations.  Society isn't constructed, even in the U.S., to fully support us.  Do what you've done so far.  Keep posting.  There are a LOT of forums that deal with epilepsy in one form or another.  WE are your family, we understand you, we love you, and we support you fully.  You drag yourself to work, for crying out loud, despite all you've experienced.  You're a hero to me. :-)

Posted 12/28/2007 11:13 PM (GMT 0)

Picocrescent,

I want to welcome you to HealingWell and thank you for responding to Caroleena.  I hope she is doing well.  I am also 56 and was diagnosed about 16 months ago.  It is definitely a life changing event.  Please keep posting, it sounds like you have a lot to offer to others and I hope you will also find the support you need here too.

Darren, our moderator is from the UK and I am sure will be around soon.

Take care!

Carla

Posted 12/29/2007 12:13 AM (GMT 0)
Hi
First I want to cheer for all of us (*cheers). Second, walking isn't such a bad thing. While I can drive, I ride my bike everyday. Many of the neighbors are envious of the fact that I am clearly quite fit. I make a point of bragging about my bike use whenever possible. I'm quite pleased that I've ridden thousands of miles in 4 years. It's a garage sale bike ($45) so this has saved me a lot of money. Also, exercise has been one of the best "medicines" I have. It has really helped me deal w the stress and depression.

People pay money to join health clubs and use treadmills. Walking or biking is free and often has mental and physical benefits. I'd buy a nice pair of running shoes and a athletic looking jacket and enjoy the chance to be physically active. You can also brag about a lower carbon footprint and the money you've saved in not driving a car. Add up the purchase, gas, insurance, repair and depreciation costs; it's often a lot of money.

I hope this has some relevance to your situation. I also hope you can get the coworker under control.

Best of luck

Jim
Posted 12/29/2007 12:31 PM (GMT 0)
Thats a good point Jim. Exercise is good for you and is much cheaper. If I were fitter, I would ride a bike, but I cannot ride very far and when I am at Uni (in Wales, UK) it is mostly hills which doesnt help! tongue  Its a great idea though for all those who can do it. I guess having a driving licence is simply a recognition of independance for some people (including myself)

Posted 12/30/2007 12:59 AM (GMT 0)
I really like being free from having to rely on a car. Does this make me crazy? Probably. I've owned quite a few vintage sports cars. I have a lot of fun helping people use bikes. I built up a trike for my 72 year old neighbor. She pedaled around the block and loved it. Then she told me she'd never ridden a bike before!

It's possible to set up the gears on a bike so riding hills isn't such a problem.

LOL I still have my driver's license basically because I ride a bike. I ride to all my doctor meetings (sometimes this is a 20 mile roundtrip) and make it clear I only drive if necessary (hauling supplies to work on my house for instance). I think the fact that I am healthy enough (and willing) to bike w/o problems is probably why no one's reported me yet.

It's fun to figure out what a car would cost per year (possible $500 - $1,000/month?) Then invest that into a good mutual fund (some American funds are paying 15% and better). Do this for 5 years and be pleasantly surprised.

Good luck.

Jim
Posted 10/18/2008 1:20 PM (GMT 0)

 Good Morning Caroleena,

 I have had Epilepsy almost as long as you due to a brain abscess and am now 44 years old so I understand where you are coming from since I also ride the bus and walk just about erverywhere.There is nothing wrong with dressing comfortably because of the weather (i live somewhere where it gets really cold so I know exactly what you are talking about.I also hate having to get a ride from someone because I am an independent sort of person. The fact that your doctor cannot find the right dosage may mean you need to find another doctor. If these people at work who supposedly are your friends feel the need to ridicule you and gossip about you maybe you just need to find different friends.

With seizures you always have to be careful, I know I do because I can have a grand mal at any time day or night since I also have them in my sleep. I always tell my cat when I go out that I will be back in a little while "hopefully".You just have to not let is stop you from doing the regular things every one else takes for granted.I just remember that there are people out there that are alot worse off than me.

good luck

✚ New Topic ✚ Reply
12