How do you deal with it all? - Epilepsy Message Board

painterguy · 03-11-2007, 10:03 AM

I have had epilepsy for 39 years, and I am 49 years old today. For the most part I have done pretty good at dealing with it. There are times however like the present when I am having problems and feel like I can't take anymore of this. I often feel as if I am stuck in this world very much alone to myself which no one really understands. I admit that I get a little frightened and worried at times as to my future. I look at my life and it is not where I want it to be because of my epilepsy. I wish I felt stronger emotionally right now. I am afraid to go for a simple walk because I do not feel that clear headed and fear what might happen. I do not drive anymore and that has really hurt me. Friends and family really do not want to bother with driving you here and there. At times I wonder what I did to deserve this, or was there something I did wrong when I was a child. I have been on quite a few drugs unsucessfully and that scares me as well. How many more chances do I have? I am trying to keep myself together and ask any of you to tell me how you deal with it. I am feeling real low right now.

creativenative · 03-11-2007, 12:07 PM

it is hard to live with my daughter was diagnosed with epilepsy 2 yrs ago she is 9 now. And it is a hard to live with. as a mother I am finding it very hard i have had a couple of days of being really stressed. I have been surfing around tryin to find support even just talkin about it. Helps. My daughter has seizures in her sleep they had her on topamax and slowly took her off the meds and changed it because of some side affects. I will say a prayer for you that God gives you the strength to go through what has been happening in your life. Take care of you
Shirley

Kodo · 03-11-2007, 06:18 PM

Hello painterguy,

I have lived with epilepsy for over 20 years and have often felt the same way you are feeling. I had SO many dreams and goals when I was younger, but my goal began to be just to make it through the day without a seizure, depressive mood swing or some other mishap. Once I tried taking an anti-depressant and it actually caused more seizures. I have asked myself so many times as to why I have the condition, is it is just pure chance, some type of punishment or test?

I do try to remind myself that there are many beings on this planet that have it much worse and not to take what I do have for granted. One method I do use is meditation to help help me relax and deal with the condition and its effects both mental and physical. You can find different methods of meditation all over the internet, so just go with the one that feels right. Although simple it is not easy and does require some discipline, but I have found it to be very valuable and also chemical free!

Best wishes,

kodo

Trish17 · 03-11-2007, 08:12 PM

Happy Birthday!!

I know just how you feel. I think the most depressive part is not being able to drive. We can't just pop up and run to the store, or go on a drive just to get out of the house. The seizures are damaging to your emotional life, and anxiety sort of sets in when you never know if or when it happens, especially among other people. I had to get used to biking or riding the bus, until I started having the courage to ask for rides. I have learned to look at one good side--at least I can see, and I can walk to bus stops. I would like to invite people to do things, and not feel like I'm inviting them to take me.

It has been a tremendous help to find a super support family within my church. God has taken care of me, and I have ( in the past 2 years) found more peace with it all than ever before in my life. They have made me feel like I'm not a burden. I'll pray for you, too. Do you have a support group, or a seizure clinic to meet with others? It really helps to meet other people with health problems. It sounds wierd to say that, but everyone deals with their own health in different ways, and good advice comes from someone else who has been there.

Why do you call yourself Painterguy? Do you paint? I paint as a hobby. Oils, and craft acrylics. It's good therapy.

Take care, and find helpers. Meditation, music and prayer are tremendous helps.

Trish

Travis from MN · 03-11-2007, 08:34 PM

Painter, think to yourself, what you like to do. Be it fishing, camping, hunting, arts&crafts, sports, ballgames. I think you can see where I am heading. If you can take time off, or a break, RELAX for a week or so. You don't have to do anything if thats what you want. Just remove yourself from your "home" environment. Recharge your batteries so to speak.

It sounds like you are wearing ragged and need to do something different, if only temporary to "mix up" your routine. For me, that can be getting up in the air for an hour or so in a small high wing plane. Come this spring there are the "pancake fly-in's" starting up. See if we can make any of those on float again.

I have a daily-weekly "rut" I am in. When I can break free from that and do something different, out of the norm it helps.

Correct, nobody deserves a medical condition. Babies didn't ask to be addicted to controlled substances before being born. We didn't ask to have epilepsy/seizures. It was something that happened beyond OUR control . Once we accept that, then it's starting to mend the torn fences we have inside.

In my case, I can't change what happened 26 years ago. If they didn't remove the tumor I wouldn't be here now. I Look at it that way. I'm a lot better off WITH seizures after the operation than if they did nothing. I'm alive and breathing. I could drive for a few years. Still have all my fingers and toes, I can talk. Heck there are people who are a worse off than me. I shouldn't complain at all.

Try to see the positive in things...

--Travis