On Monday I get tested to find out if I am epileptic. (SP?) Its been a rough 8 months recently dealing two other pretty awful (read:life threatening) illnesses. I’m tired of being sick. I want to go back to living my life at the top of my form. I’m beginning to feel as though these challenges aren’t worth meeting, another one will come along until they kill me.
I never realized how precious my lifestyle was to me until it became impossible. How full and rich I could live each day. This new possibility truly frightens me. This is rest-of-my life stuff. I want to be a Chemical Engineer. i want to finish growing up and get married and have kids. I don’t want to be one of those glowing chronically ill people that inspire others to have a hope for life. I want my own hope for life. I want to learn piles of cool stuff, dance barefoot in the rain, meet as many interesting people as I can, grow old.
Sorry to take up time whining, but this was the forum for it, I guess. Any suggustions for help or comments are fine. My only solid comment is that I hope none of you will get the experiances I have gotten to live through.
So many things I could say here, comparing your life to mine. However, I get the feeling you’re tired of hearing sob stories, so I’ll just share a few things with you:
I don’t know exactly how you feel, but I’ve been in similar cirumstances. I have been sick with an incurable disease for probably my entire life. I deal with it by realizing it’ll only kill me if I let it. I have wanted to die before, but even that didn’t kill me, as I thought about painful ways of ending what was then my pathetic existence.
Cry. Get the emotions out there; don’t bottle them. Absolute worst thing you can do is not deal with them now while they’re fresh and the scarring is minimal.
Find one good thing. Obsess about it to the point where it’s all you’re about. People will think you’re crazy. Let them. If it’s making you happy and not hurting anyone else purposefully, they can go get squicked.
Remember we all love you, no matter how messed up (or not) you are. Right now, saying “this, too, shall pass” isn’t the best idea because it seems as though you’ve been getting things passing and new things show up.
Epilepsy probably isn’t going to kill you so long as you get properly medicated. So at least you’ve got a disease that doesn’t kill many people. Plus you don’t have to serve on the frontline if war comes along.
If you feel lonely, get a pet or a SO. They can do wonders for a bad day.
Feel free to email me if you get really down. I’ve been known to help people feel better. Maybe that’ll be the case with you.
Well, I just wrote a really inspiring post and lost it, but Iampunha pretty much summed it up best.
I don’t want to post a “me too”, but I know it helps to hear that others are going through the same things.
Like Iampunha, have a disease that won’t kill me unless I let it (ulcerative colitis) and it puts me in the hospital about once a year. When it’s really bad, it definately affects my lifestyle. I’ve had to give up a lot of good times in order tend to my illness.
That being said, it definately helps to focus on the things that make you happy. If you can’t do those things anymore, try to find new ones. I’ve spent many times wanting to end it all, only to come out fighting because I realize that the bad times do pass. If the good times come few and far between, enjoy them. A lot of people take life for granted and this is an opportunity to make the best of a bad situation.
If there’s any way you can reach your goals, at least try or you may regret it. I finally graduated college at age 26, but I’m glad I did it. My professional life is moving very slowly, but at least it’s progressing and I’m trying. And that’s all you can ask of yourself right now.
I know this is a cliche, but you aren’t alone and if you need to vent, do so. No one here will be bored with your “whining”, because it’s not whining when you’re seriously ill.
You want to complain about how life sucks, go right ahead. We’re here for you. I hope that’s of some comfort.
When I feel really and trult depressed as though nothing will ever get better, I go back and read something a friend of mine wrote to be a while ago . . . a few things by a few different people actually. They basically say that I am a special person and that I am someone they are glad they know. I’m horribly butchering the words they used, but the idea is very special to me . . .
Especially considering they were the first outside my family to say so.
You want to complain about how life sucks, go right ahead. We’re here for you. I hope that’s of some comfort.
When I feel really and trult depressed as though nothing will ever get better, I go back and read something a friend of mine wrote to be a while ago . . . a few things by a few different people actually. They basically say that I am a special person and that I am someone they are glad they know. I’m horribly butchering the words they used, but the idea is very special to me . . .
Especially considering they were the first outside my family to say so.
Right now anything I’d say would be facile at best. Nobody can really know what you’re facing, though many can offer similar experiences and heartfelt hope.
None of your dreams are headed for the trash heap. If you are diagnosed so, it isn’t curable–now–but it is treatable. At the worst you’ll have a hurdle most don’t face. But there are lots of hurdles out there, so don’t dismiss those who are clearing them, day by day.
'Tain’t fair, none of it. Even though I’m not a Christian, I find great comfort and truth in, “you won’t be given any test without equal strength”. A diagnosis is just an identification of a problem, not a sentence.
This sounds so much prissier and cold than I mean it. You, all of you, the past, strengths, and hopes for the future are NOT neatly contained in a test. One of my best friends in the world is epileptic, subject to grand mal seizures. My freshman roomie, to be exact. I freaked a bit when faced w/ the “first aid” stuff, but very quickly learned to see the disease as a minor factor in context of a great human and friend.
FWIW, she’s happily married and parent to 2 great kids. The biggest barriers were the hopelessly mundane male/female stuff.
I’m not belittling your fear, truly. But no matter how it comes out, your dreams, future, hopes and will are intact.
Please…email me if you want. You’re walking through a dark time right now, but wonderful things still await.
There’s a great saying I heard a long time ago about epilepsy: You have epilepsy–epilepsy doesn’t have you.
I’ve been dealing with epilepsy for 17 years. For me, it’s not a huge deal. I was 16 when I was diagnosed, so it was a bit of a surprise, to say the least. Since then, though, I haven’t let it get in my way too much.
Some people do have a far worse problem than I do, though. I’ve been lucky. My seizures are actually a far-out PMS symptom. When I have them, they are either two to four days before my period, or one to two days after my period has started. I’ve had a few during two of my three pregnancies, but those were the result of bladder infections. Peeing a lot, as a bladder infection will make you do, tends to lower the level of meds in your system, which can result in a seizure.
The best advice I can give you, if the tests say you’re epileptic, is to take your meds and listen to your doctor. I don’t know if you’re female or not, but if you are female and take birth control pills, remember that anti-convulsants can interact with the pill and make it less effective.
Good luck to you, and feel free to email me if you’d like!
I know there’s no sense beating a dead horse, but this is an exception. I am a firm believer in that if you see something enough it will become part of you, no matter how much you resist. So if you’re not resisting, this stuff must be ingraining itself.
The sickness I have which is incurable is clinical depression. To some that seems like A. not an illness and B. not something that’s going to kill me any time soon.
A: It is an illness. It is caused by, among other things, the inability of my brain not to absorb every last drop of serotonin it makes.
B. It came entirely too close to killing me several times a few years ago. It is very real, and mental illnesses such as these have killed people before. I have a friend in California whose father killed himself due in part to his mental instability, which was very much related to depression.
From what I know of epilepsy, it is not curable but it is very much treatable. And the key, in my opinion, to dealing with any long-term illness is to get a competent doctor and forge a strong bond with them (male or female is up to you) and keep that bond, because someone who is familiar with your medical history beyond what’s written is going to know exactly what’s best for you, or they’ll know who can help you the most.
Good luck. And don’t hesitate to email if you want to talk more or in depth. While there are some things about which I won’t talk on the SDMB, there are precious few things I won’t discuss on email, and this ain’t one of them.
Medea’s Child – My daughter is an epileptic. She dances barefoot in the rain. While we still haven’t quite reached the balance point for her meds, we’re close. And, if they don’t work, there are other treatments out there.
Life is seeming pretty shitty right now, but there is no reason whatsoever to worry about this having the slightest effect on your career plans. Many brilliant and successful people are or were epileptic.
Persephone – Yeah, the reason we sometimes feel we’re back at Square 3 with my daughter is that she has hit puberty. This will be an interesting next few years as she works through epilepsy and growing up. Do you modify your meds by the time of month?
iampunha – You taking anything for the depression? I went untreated for almost all my life, until it got so bad that I had to try something. So, every day, whether I feel like it or not, I take my meds. Hope you are, too.
Medea’s Chld, I don’t see why any of what you said would stop you from reaching goals you set for yourself.
You said, “I don’t want to be one of those glowing chronically ill people that inspire others to have a hope for life. I want my own hope for life.”
Look to someone who may inspire you then. For me, it was Stephen Hawking, one of the most respected scientific minds in the world. If you can find the documentary A Brief History of Time you will see why he is such an inspiration. It is available on video, I’ve rented it after reading the book. If you don’t know who Stephen Hawking is, he is a scientist suffering from Lou Gehrig’s disease. He is confined to a wheelchair and cannot talk, he uses a computer to synthesize(SP?) his voice for him. He has lived far longer than any of his doctors predicted and has made some of the greatest scientific discoveries of our time. (including a theory that shows how some matter can escape a black hole)
An illness, even an incurable deadly one (such as Lou Gehrig’s disease) will only set you back as far as you let it.
On a more personal note, I was in a nasty car wreck when I was 22. I broke 3 ribs, my left leg, my left arm, hyperextended my right knee and hit my head so hard, I now wear glasses. (Left eye is 20/20, the right eye is 20/70)
My legs were so mangled, at first I was told I may not walk normally again. They told me I would be lucky to walk without the need of crutches, or at the very least, a cane. My left shin and ankle was so tore up they wanted to amputate below the knee, but my father adamantly refused (I was unconscious for 15 hrs following the accident, so my dad made the decision for me - thanks Dad!)
I know this isn’t the same as an illness, as bones can heal more easily, but it’s something that at the time felt insurmountable to me. Everyone telling me I may not walk again, and if I did, I wouldn’t walk without aid. Luckily for me I inherited some personality traits from dear ole Dad and I can be a stubborn son of a bitch when I want. After 8 months of healing and physical therapy, I’m out of the wheelchair, off crutches, don’t use a cane, and the limp is barely noticeable. And I have two legs thanks to my dad.
I don’t know if this helps, but don’t lose your hope, sometimes that’s all that gets us through the hard times.
The best I can do is to echo the words already said by so many wonderful people here, so I won’t. Just know that I agree with them, and am here for you, any time, any way I can be for you. Take care of yourself, listen to your heart, listen to those who love you, listen to your doctor.
dropzone: No, I don’t modify my meds. But that’s because I don’t have seizures every month. At their peak, I had five in one year. The number of seizures I’ve had since I was diagnosed averages out to about 2 a year. That’s why it’s not a huge problem in my life. For others, it is indeed far worse. I’ve just been lucky.
All of the women in my family, with the exception of me, get migraines right around their periods. I just took it to the next level.
How old was your daughter when she was diagnosed, dropzone? If she was very young, there’s always the chance that she could grow out of it. My first neurologist told me that that can happen in many cases. In my case, with the family history of PMS migraine, I more than likely won’t be non-epileptic until after menopause.
((((Medea’s Child)))) Since you’ve had these other problems too, I’d also recommend some form of mental help. No, you’re not crazy! But having so much stuff happen in such a short period of time is no doubt traumatic, and it couldn’t hurt to talk to a therapist and get a little help with coping. There are lots & lots of people trained to deal with this kind of thing. Poor physical health is a much larger strain on your emotional health than a lot of people realize. Good emotional health can make it much easier to deal with physical illness.
I was put on Zoloft at the end of junior year (roughly June '98) . . . dramatic changes the day after, even . . . from suicidal to assertive.
I’ve since weaned myself off the stuff, but I carry a few pills (enough for a week) in my wallet in case Iget into a situation where I need them.
I haven’t taken a Zoloft pill since perhaps this past winter ('99, not '00). I haven’t felt the need . . . the depression hasn’t been as bad as it was midway through soph year, which wasn’t any fun, either.
However, I know my limits. I remember what junior year was for me. If I get like that again I have the sense to not wait it out, since that might leave me dead.
Medea: Some people are frightened at the thought of having to go to a psychologist or psychiatrist. I didn’t want to go initially because I didn’t want to dump all that stuff on someone else. If you feel hesitant about going to one, I hope you remember you’re worth every second of any doctor’s time. They purposefully become psychs for a reason; they want to help people.
That’s about all I can think of for now. Medea, if you need help please do not hesitate to ask.
Thank you all. If I’m not lazy I’ll get around to e-mailing you guys personally, but if I avoid it, thank you. I’m just bumming out for a bit and the chorus of what I know and live by is helpful. I am already in therapy from the rest of the stuff that has been happening.
This is a really big deal to me. I come from a non medical religion. I didn’t know my blood type until six months into my first medical disaster of the year. (Much less any alergies to medications or a doctor or what half this medical stuff is…) A lot of my aprehension is due to the idea that I will have to make a choice about having to take drugs on a regular basis. I like being a strong, free willed, independant person and part of that has always been tied to my freedom from physical adictions.
Anyway, thank you for the sharing and caring. “Shared pain is lessoned, shared joy is increased” (from the Callahan series by Spider Robinson)
I agree with Persephone: you (may) have epilepsy, but it doesn’t have you. The other thing to consider is that this doesn’t change who you are. You are still the same person! You are a daughter, a student, a friend, a (insert employment here), everything else that you were last week. None of these things are erased to make room for the word epileptic. You are still lovable, worthy, intelligent, and a warm and wonderful person. This doesn’t change any of that.
Don’t know if that helps at all, but know that you are in my thoughts.
(((((Iampunha)))))
repeat as needed. Love ya babe.
If you do indeed have epilepsy, you won’t have much choice about the medication. You’ll have to take it, or continue to have seizures of some sort (I don’t know what happened to make the doctor suspect you’re epileptic). Trust me when I say this: taking the meds will allow you to continue on with a normal life. They will NOT change your personality. Nor are they addictive. Depending on the medication, you might feel an effect if you miss a dose (an effect other than seizure, I mean). This is common with darn near all prescription meds that a person has to take long-term, though.
If you are epileptic, taking medication will allow you to continue to be the strong, free-willed, independent person that you are. It will also allow you to do the simple, daily tasks we all do. Take driving, for example. I don’t know the laws concerning epileptics and driving where you are, but here in Michigan (when last I checked, anyway), doctors are not required to notify the state when a patient has seizure. They can, but it isn’t required. If they do, though, you can’t drive for a certain length of time. I’ve never had my license officially revoked due to my seizures, so I couldn’t tell you how long that time period is. BUT, after every seizure I’ve had, my doctor always says “no driving, except in emergencies, for six months.” That totally blows. But it’s a thing I’ve got to deal with. If I take my medication, though, I don’t have seizures, and I can drive. I’ve been seizure-free for over two years now. If you don’t take the meds and get the seizures under control, you will lose your right to drive. Or have a seizure while driving, and lose your life.
Taking an anti-convulsant doesn’t mean you must stay home & be a slave to the drug. It just means that you must take a medication so you don’t become a slave to your seizures. You may have to make some relatively minor lifestyle changes, but that isn’t even a big deal, either. Be careful when you drink alcohol. Be sure to check for medication interactions, even with over-the-counter stuff. Avoid strobe lights. Let the people you spend time with that you’re epileptic, and instruct them on proper first aid when a seizure occurs (and unless you’re biting your tongue in half, tell them not to stick anything in your mouth while you’re seizing. Man, I can’t believe how many people still do this). Pretty simple stuff, really.
You will continue to live a normal life while on anti-convulsants, believe me. I’m doing it, and I’ve been doing it for 17 years. The meds let me. Epilepsy hasn’t stopped me from doing anything I really want to do.
Except hangliding. The doctor did warn me away from that.
Persephone – my daughter was seven when she was diagnosed. We first thought the seizures were febrile (started by a fever) since she got the first one when her temperature was just starting to go up. Just like her ol’ dad. But I outgrew it about the same time as she started hers (just the occasional migraine, now). She hasn’t yet, but we’re still hoping.
The meds they have today are better than forty years ago, at least. I was given an anti-seizure medicine from the 19th century and phenylbarbitol. Mom asked me once if I remember kindergarten. I said no. She said she wasn’t surprised.
iampunha – I’ve heard of depressed people getting better. I’m still on the pile-o-Prozac (50mg) diet after 2.5 years. Probably on it for life.
I’ve been on Celexa (for a while) and now Serzone (newer SSRI’s) for anxiety/depression. Mostly anxiety. It does help. And I will probably be on them for life, as well. It’s worth it not to be constantly tense and anxious, tho the symptoms have never completely gone away.
Medea’s child, never been epileptic, but know what it’s like to be on long-term meds. Email me if you want...rhorus@hotmail.com…anytime–and I work nights, so if you want me at work, email my hotmail and I will give you my work email address…sometimes the middle of the night is when you most need someone to talk to.
