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Coming to grips with my diagnosis.
Sat, 11/09/2013 - 12:34Topic: Living With Epilepsy - Youth
As I sit here this morning, looking outside, I thought it would be nice to take a walk in the woods with my dogs. Other days I remember my life as a truck driver. I keep myself pretty busy, but the knowledge of what Epilepsy and seizures have taken away from my life has been hard. My driving career is over along with driving my personal car. My independence is gone.The depression that had left me a mess before I was diagnosed, drove people away from me, and people said I was completely different person. I stopped taking my medications regularly, thinking they were the cause of my problems. The first set of seizures left me in bad shape, I was unconscious for a day and upon waking had no idea where or who I was, or what had happened. I spent 6 days in the icu. My wife was there for me, and we are so close we are almost the same person. Over the six days doctors came and went, new medications and a conference to talk about what had happened, I still denied that anything was wrong. I finally came to grips with what had happened an my memory came back. Going home was nice and over the first month I thought I was ok with it. I had another very bad seizure that left me in the icu again, without the coordination to walk properly, this got better over five days but I needed to go to a nursing home for therapy. After going home my wife and I had a meeting with my neurologist. My medications are being finetuned. I'm having a hard time reconciling what I am now. With the winter coming on, the things I did outside to occupy myself are over. My question for all of you is how have you learned to cope? Working is out of the question and I fear having another seizure away from home. I'm always waiting for the other shoe to drop.
Comments
Re: Coming to grips with my diagnosis.
Submitted by Susan Wright on Sat, 2013-11-09 - 18:38
SusanNW -- You have been through an awful lot. But keep in mind that neurologists tend to stay at it until the meds are right. When that is taken care of and when you can really relax, you very well might find your revised identity.And it might be pretty good. I hope so.
I know what you mean about waiting for the other shoe to drop. I don't get used to that.
Take good care of yourself and give your wife greetings from me. My best to you both, Susan
I can definitely relate. I am
Submitted by Anonymous on Wed, 2014-04-30 - 00:19
I can definitely relate. I am 23 and was just recently diagnosed with epilepsy. I have always suffered from depression but once I found out I felt my got turned upside down. I live in the middle of nowhere so not having a car is a major pain. I'm trying to move to a nearby city but I do not have the money because I fractured my shoulder in a car accident (that I caused from the seizure). It is just now beginning to heal but I cannot even really work anywhere. The nearest job is a good 1 hour long walk. I am too afraid to walk that far on backroads for fear I may have another seizure. My meds also make me even more depressed because it took away the little bit of energy I had. The simplests of tasks overwhelms me. Getting out of bed is difficult for me most days.
Re: Coming to grips with my diagnosis.
Submitted by just_joe on Sat, 2013-11-09 - 17:24
I have read your post and thought of several things which might help some people try to help you get things right.
You age was not entered. You have to be old enough to get married but young enough to think all is over because you can not drive again. Understand that there are many people with epilepsy that have been thru what you are going thru and their neurologist have fine turned their medications well enough for them to bee seizure free and driving again.
What you did outside with your dogs was not entered so we have no idea how we might help you there. I have had dogs and loved playing with them. I also hunted with them and did a lot to train them. So it all depends on what you did or want to do. I was 12 when I had my first seizure and I had a paper route. I couldn't ride my bike but I did not give up my paper route. I got more new customers which took longer to deliver the papers to but I still kept my route. Just because you have to stop driving does not mean your life is over. Hell I have never driven. I know how just in case of an emergency.
You say you and your wife and meeting with your neurologist to fine tune your medications. Listen to your neurologist but also use the diary at the top of this page listen to the person and use the diary. The more information your neurologist has and gets the better he can assist you with procedures and medications or combinatins of medications that can get you seizure free.
You seem to give up on working. You may not drive but does that mean you can not work? I have had dreams of doing many things. I also went thru hell with the stigma of if you have epilepsy you can't do this or that. Been there done that. The more people told me I couldn't do things the harder I tried to prove them wrong. You see I have lived with epilepsy for over 50 years. I have done many things and had many dreams. Just becasue I had a dream which could not be achieved because getting too hot too fast can trigger seizures does not mean there was another road to go to achieve that dream or make another dream. I know I was being trained as a roving chef and like I posted I had a seizure after going over 3 years without any period no aures no nada. I have done many things in my life but just because I had epilepsy did not keep me from becoming a salesman, outside sales rep, office manager. warehouse and office manager, part ownerin a small business. My dreams were to achieve something. I loved working with my hands. I was pulled of shop in school. I said to myself if I can't make it I'll draw it. By the time I was a jounior in high school I could take a motor apart on paper and in my garague. What help me more than anything was having to prove to others that people with epilepsy can do what others can we may have problems getting there but we can achieve our goals. If the road is closed take side street. To get from point A to point B you generally draw a line which is straight and go that way. If something covers the road you take a turn and keep moving toward point B.
I don't want you to think I am saying anything bad about what you are facing but I am saying don't let epilepsy become a crutch. There are too many things that can be accomplished to stop living your life. I may not have becoame that chef like I had dreamed. But I have had and will have a cookbook on the web. My neurologist and also hear me telling some of the nurses what they can do and I have given them all recipes I have created. I have family members still asking me what to do for a small dinner party. Keep your mind active and keep learning. There are always things to do and yes there are and will be jobs that you can do.
I sincerly hope this helps
Joe
I have read your post and thought of several things which might help some people try to help you get things right.
You age was not entered. You have to be old enough to get married but young enough to think all is over because you can not drive again. Understand that there are many people with epilepsy that have been thru what you are going thru and their neurologist have fine turned their medications well enough for them to bee seizure free and driving again.
What you did outside with your dogs was not entered so we have no idea how we might help you there. I have had dogs and loved playing with them. I also hunted with them and did a lot to train them. So it all depends on what you did or want to do. I was 12 when I had my first seizure and I had a paper route. I couldn't ride my bike but I did not give up my paper route. I got more new customers which took longer to deliver the papers to but I still kept my route. Just because you have to stop driving does not mean your life is over. Hell I have never driven. I know how just in case of an emergency.
You say you and your wife and meeting with your neurologist to fine tune your medications. Listen to your neurologist but also use the diary at the top of this page listen to the person and use the diary. The more information your neurologist has and gets the better he can assist you with procedures and medications or combinatins of medications that can get you seizure free.
You seem to give up on working. You may not drive but does that mean you can not work? I have had dreams of doing many things. I also went thru hell with the stigma of if you have epilepsy you can't do this or that. Been there done that. The more people told me I couldn't do things the harder I tried to prove them wrong. You see I have lived with epilepsy for over 50 years. I have done many things and had many dreams. Just becasue I had a dream which could not be achieved because getting too hot too fast can trigger seizures does not mean there was another road to go to achieve that dream or make another dream. I know I was being trained as a roving chef and like I posted I had a seizure after going over 3 years without any period no aures no nada. I have done many things in my life but just because I had epilepsy did not keep me from becoming a salesman, outside sales rep, office manager. warehouse and office manager, part ownerin a small business. My dreams were to achieve something. I loved working with my hands. I was pulled of shop in school. I said to myself if I can't make it I'll draw it. By the time I was a jounior in high school I could take a motor apart on paper and in my garague. What help me more than anything was having to prove to others that people with epilepsy can do what others can we may have problems getting there but we can achieve our goals. If the road is closed take side street. To get from point A to point B you generally draw a line which is straight and go that way. If something covers the road you take a turn and keep moving toward point B.
I don't want you to think I am saying anything bad about what you are facing but I am saying don't let epilepsy become a crutch. There are too many things that can be accomplished to stop living your life. I may not have becoame that chef like I had dreamed. But I have had and will have a cookbook on the web. My neurologist and also hear me telling some of the nurses what they can do and I have given them all recipes I have created. I have family members still asking me what to do for a small dinner party. Keep your mind active and keep learning. There are always things to do and yes there are and will be jobs that you can do.
I sincerly hope this helps
Joe