1. < Epilepsy & Seizures

Inability to live a normal life — lost, scared

Posted by davidinvegas @davidinvegas, Dec 20, 2018

I have always had a hard time living what I would deam a normal life. I probably don't need to break it all down. My epilepsy has never been fully under control. 32 years or so. The number of seizes isn't the problem, although 1 is to many. About 2 a month, very severe. A lot of injurys over the years. Mostly head injuries. Getting to be a real problem on my mental outlooks. I have had a lot of changes in my life over the past 6yrs. Rainging from divorce too mom passing away, selling her house. Me moving and not being able depend on anyone. Taking care of business is feeling farther and farther away. Afraid, embarrassed and just plain lost. Getting work is proving to be tough mentaly and physically. Leaving it at lost, scared, can't see any kind of light in my personal tunnel.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 31, 2019
In reply to @jakedduck1 "@davidinvegas I agree with @hopeful33250, an excellent point. I’ll take a stab at it but remember..." + (show)
@jakedduck1

@davidinvegas
I agree with @hopeful33250, an excellent point. I’ll take a stab at it but remember I’m abnormally normal. By the way, I don’t like that word either.
Always be yourself David, you are perfectly normal my friend and never think your not and NEVER let anyone tell you otherwise.
Don’t try and fit into someone else’s idea of what they perceive normal to be. My belief is there’s only a perceived normal. You don’t want to lose your individuality. Who’s to say what normal is anyway. Personally I think the so called “Normal” is highly over rated. I’m definitely not normal. I refere to myself as uniquely abnormal and I’m fine with. Not so sure a psychiatrist would be okay with it though but I don’t care. Who wants to be just like everyone else? Create your own normal.
Your doing a fantastic time job coping with what life threw at you. We who have Epilepsy have a different normal anyway. My normal was to have seizures everyday. Now my normal is not to have them. Last one was 6 years ago, YEAH!!!!!
I’d be curious what your counselor has to say about that.
Wishing you all the best,
Jake

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@jakedduck1 @davidinvegas Like Leonard says, who determines what is normal? Think to a time when your issues might not have been so severe. That may be your normal, and what you want to aspire to. Perhaps rather than convincing yourself there will be a problem, work towards a mindset that things will go well, that there may be some minor glitches in the road, but those will be handled on a case-by-case basis and won't be something you experience all the time. Twist your thinking, and visualize how you want things to turn out. Hope this helps!
Ginger

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 31, 2019

@gingerw makes a good point, @davidinvegas. Sometimes it is helpful to visualize a new normal. As I posted earlier, however, it is hard to know what feelings might be from anxiety and depression and which ones might be from medication and the brain disorder. We are all wishing the best for you. You have a supportive community here on Connect.
You are a strong person and we are in your corner.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 8, 2019
In reply to @davidinvegas "Thank you for the info. Stuff I hadn't thought of. Still waiting for call backs but..." + (show)
@davidinvegas

Thank you for the info. Stuff I hadn't thought of. Still waiting for call backs but I need to keep all that in mind. Only problem is when I have one it's bad, won't stop till I'm sedated. Been longer to recover too. Thank you.

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Hello @davidinvegas

I subscribed to The Mighty, which is a daily newsletter for people dealing with chronic illnesses. Today they had an article on employers who are hiring people to work from their homes. You came to mind, so I thought I would share the link with you. Just click on the link and see if it offers any new ideas for you
https://themighty.com/2019/02/work-from-home-jobs-remote-disability-february/?utm_source=newsletter_chronic_illness&utm_medium=email&utm_campaign=newsletter_chronic_illness_2019-02-08

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 20, 2019
In reply to @davidinvegas "Good morning. My stupid anxiety is just getting hard to handle again. I know it's just..." + (show)
@davidinvegas

Good morning. My stupid anxiety is just getting hard to handle again. I know it's just in my head but it's my HEAD! I've always wondered what affect these meds have on me metaly and physically. I'm. On 5 meds. I just don't know what feeling normal is. Is it just me or do these meds affect me, how and how much. Went threw a job service from the state that will train and place me in a job that fits my situation.
Just stuck in my head that I know I'm going to have a problem again. Just a matter of when and where. Trying not to lock myself away and worry. Best I can do is keep going one day at a time. Dreams, meds cause lots of them? Don't remember dreaming so much. Woke up this morning and I don't even want to repeat what my thought was. Going out to theripest tomarrow. Just need to find out what feeling normal is. Don't like that word, to broad of meaning. Only one I can think of though.

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Hi, @davidinvegas - just wanted to check in with you and see how it's going. You'd mentioned your anxiety was getting hard to handle. Has the therapist been helpful with that? Have you gotten to talk to your doctor about your medications and any side effects from them mentally and physically, like you talked about, that you might be experiencing?

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Leonard | @jakedduck1 | Mar 8, 2019

@davidinvegas
Hey Dave,
So how are things. Have you found a job yet. We are concerned about you buddy. You have friends here who want to help if they can. Hope your Seizures and anxiety are better. I hope you post soon and let us know how your getting along.
Take care,
Jake

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tdib | @tdib | Mar 10, 2019
In reply to @davidinvegas "Ward to a new independent outlook on life. Need to get roommate out and try getting..." + (show)
@davidinvegas

Ward to a new independent outlook on life. Need to get roommate out and try getting along with just me and karma, my wonderful dog. My Dr. And I are looking into vns. Only med that worked was dilantin, that was for the first 4 yrs of my disability. Haven't had full control since then. Will never drive again, it's been 15yrs since I've been on the road. I lost a wonderful job for my inability to drive. My wife had to start working and is doing wonderful job with kids. Missing her a lot. Missing my kids a lot. All I can do is live 1 day at a time and see positive things I have. I'm just getting knocked down everytime I start to get up. Will get up and will make new friends and be sure to keep relationship with my 4kids and my wife who I really love. It's put a lot on her threw the years. Going to try getting into mayo clinic. It would be nice to hear second opinion and possibly get a better handle on this. Seeing theripest today, always puts a positive outlook on my life. Thank you for words of wisdom. David W.

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@tdib, hi you mention not driving which I also have problems with but in the rural area where I live I have no choice but to be at home alone I'm 30 miles from my doctors any family, my family wouldn't bother to come to my house to see me so to keep any kind of relationship I have to go to them when they find time for me. How do you find people to be friends with all my friend have drifted away from me ,now noone even bothers with a phone call to me. So I'm living a lonely life as a shut in the only places I go are the grocery store or a doctor appt. I know I'm not a real outgoing person have always been shy and it seems it's pretty easy to forget I even exist. I don't know how to get out to make new friends that one of the main reasons I'm here on connect. Any input on how to keep family and friends from forgetting about you?

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2 replies
tdib | @tdib | Mar 10, 2019
In reply to @hopeful33250 "Hello @davidinvegas I subscribed to The Mighty, which is a daily newsletter for people dealing with..." + (show)
@hopeful33250

Hello @davidinvegas

I subscribed to The Mighty, which is a daily newsletter for people dealing with chronic illnesses. Today they had an article on employers who are hiring people to work from their homes. You came to mind, so I thought I would share the link with you. Just click on the link and see if it offers any new ideas for you
https://themighty.com/2019/02/work-from-home-jobs-remote-disability-february/?utm_source=newsletter_chronic_illness&utm_medium=email&utm_campaign=newsletter_chronic_illness_2019-02-08

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@tdib I also read the mighty they do have heplful and some inspiring articles to read . They would be worth looking into.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 10, 2019
In reply to @tdib "@tdib, hi you mention not driving which I also have problems with but in the rural..." + (show)
@tdib

@tdib, hi you mention not driving which I also have problems with but in the rural area where I live I have no choice but to be at home alone I'm 30 miles from my doctors any family, my family wouldn't bother to come to my house to see me so to keep any kind of relationship I have to go to them when they find time for me. How do you find people to be friends with all my friend have drifted away from me ,now noone even bothers with a phone call to me. So I'm living a lonely life as a shut in the only places I go are the grocery store or a doctor appt. I know I'm not a real outgoing person have always been shy and it seems it's pretty easy to forget I even exist. I don't know how to get out to make new friends that one of the main reasons I'm here on connect. Any input on how to keep family and friends from forgetting about you?

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@tdib Welcome to Connect. I am of the firm belief that we cannot force family or friends. We can't force them to forget you nor can we force them to remember you. It is my experience, and of course yours may differ widely, that there are some friends and family that were beneficial to us in the past and supported us and something happens and they are no longer in a supportive role. Friends and family like that we just don't need! So what have I done myself? I have sourced out new friends that make me feel good about myself, that perhaps see the majority of my views in the same way but with enough difference to make me think and look at the bigger picture. I get out of my comfort zone and stretch myself physically, emotionally and mentally. It doesn't matter whether you're living physically close to people or not. You still reach out. The phrase that came to mind as I was thinking about a reply is, "you're the captain of your own ship." It seems like that was something that my dad used to tell me every so often. He knew the struggles that I had dealing with family while growing up. He was not a source of the abuse that he felt powerless to assist me in escaping it. Hope this helps.
Ginger

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Parus | @parus | Mar 10, 2019

A normal life? I have no idea what normal is or ought to be. Seems everyone has a different normal.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 13, 2019
In reply to @tdib "@tdib, hi you mention not driving which I also have problems with but in the rural..." + (show)
@tdib

@tdib, hi you mention not driving which I also have problems with but in the rural area where I live I have no choice but to be at home alone I'm 30 miles from my doctors any family, my family wouldn't bother to come to my house to see me so to keep any kind of relationship I have to go to them when they find time for me. How do you find people to be friends with all my friend have drifted away from me ,now noone even bothers with a phone call to me. So I'm living a lonely life as a shut in the only places I go are the grocery store or a doctor appt. I know I'm not a real outgoing person have always been shy and it seems it's pretty easy to forget I even exist. I don't know how to get out to make new friends that one of the main reasons I'm here on connect. Any input on how to keep family and friends from forgetting about you?

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@tdib - I know that @gailb has talked about making a number of new connections and friends this past year, so she may have some ideas for you.

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