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.

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

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@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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I keep trying to make positive changes. I reach out to others and end up being used. Just cannot take the trying and getting no where. When things get this way the only thing I can do is try to get myself calmed down. I love people. I enjoy them until they want me to do things for them all the time. I am at the point in my life I will NOT enable others. I am humiliated when I ask for help. I have been referred to a new primary care as the one I was seeing is leaving and has referred me to the new one that has been hired. She is internal medicine. I hope I can understand her English. So stressed and in extreme pain trying to live in a normal world. I have made connections here.

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@parus

I keep trying to make positive changes. I reach out to others and end up being used. Just cannot take the trying and getting no where. When things get this way the only thing I can do is try to get myself calmed down. I love people. I enjoy them until they want me to do things for them all the time. I am at the point in my life I will NOT enable others. I am humiliated when I ask for help. I have been referred to a new primary care as the one I was seeing is leaving and has referred me to the new one that has been hired. She is internal medicine. I hope I can understand her English. So stressed and in extreme pain trying to live in a normal world. I have made connections here.

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I know life can be really hard. I learned a hard lesson. I tried to find support in the wrong people who weren't able to support me. I dont like asking for help either. This is a great support. Find other ways to make connections in your community. Hope this helps

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@suscros68

I know life can be really hard. I learned a hard lesson. I tried to find support in the wrong people who weren't able to support me. I dont like asking for help either. This is a great support. Find other ways to make connections in your community. Hope this helps

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@suscros68
I don’t understand what the problem is in asking for help. True loyal friends don’t mind at all. I enjoy helping my friends whenever and however I can. If I take them somewhere or help them out when they are home I m able to spend more time with them which I enjoy. Of course they all know better than to ask me to cook, probably because of the yucky slop I always conjure up. I can even ruin a TV dinner. As far as being taken advantage of that is your fault if you allow it. I have been in that position too, but I only blame myself. As far as support goes sometimes people don’t think they are getting support because it’s not what they want to hear. But it’s often the best support you could ask for. A true friend doesn’t just offer superfluous advice but what they consider honest helpful meaningful advice. How can you not appreciate their concern and honesty.
Jake

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@parus

I keep trying to make positive changes. I reach out to others and end up being used. Just cannot take the trying and getting no where. When things get this way the only thing I can do is try to get myself calmed down. I love people. I enjoy them until they want me to do things for them all the time. I am at the point in my life I will NOT enable others. I am humiliated when I ask for help. I have been referred to a new primary care as the one I was seeing is leaving and has referred me to the new one that has been hired. She is internal medicine. I hope I can understand her English. So stressed and in extreme pain trying to live in a normal world. I have made connections here.

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@parus. Parus, what are you afraid of?………….Karen

Liked by Parus, Leonard

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To @davidinvegas. Personal tunnel…… It's pretty accurate. I'm 63 and started with a GM when I was 22. I haven't had head injuries for 15 years but remember well when I did. They still show. Lost a good job in 2003, and for 2 years had about 30 sticky-tabs on walls, doors, kit, bath, bed, front door, telephone, inside fridge, range, cabinets, to remind me what I was doing at each location when I got there. Memory was thinking someone tried to hide my toothbrush and not remembering if my sister spelled her name with a Y or an I. I hired people to drive me to work locations because in construction you can get away with it in the right place. However SS Disability doesn't cover the house payment and, a 2nd mortgage bought groceries and utilities. I had a truly crazy mean mother, worse than no help, and other large parts of the family visited by law enforcement regularly at my house. I've used quite a few meds over the time and I'm on a $2700 a month expensive one now (limictal XR), I get it $60 cheap but, gov or however the program works, it may not be covered next year or the next per the supplier stating they may not know. There is a little panic that goes with those thoughts in January. I'm just about maxed out for taking a larger dosage.

Our tunnels. I didn't tell anyone about my having epilepsy until probably 55 yrs old, and kept it to 3 or 4 people then. But by 63 it gets around with all the same-ol-same-ol that goes with it. No-help for a daily business of life. Getting older has made the tunnel easier only because, like several other items, there just isn't enough time to spend on personal assessments. Not spiteful or angry, just fact, no time. Tunnels, divorces, lost houses, work you can't have, the tunnel, the 2nd mortgage you knew wasn't going to last long. Scrambling. Giving up my own tough assessments of me happened over a 2 year period and I even started wearing shorts in the summer, haven't owned any since prob 15, bow-legged. The tunnel now is mental health degeneration with how difficult it is to fake it, but not letting it show, anywhere, lotta work. My sister has been gone 5 years, spells it with a Y. I try to measure from remembering it's a Y.

I'm fortunate right now in that seizures amount to 30 seconds of speech loss, memory that I'm fair on still learning how to hide. So that has afforded me sticking my head out of the tunnel, but I do live there too and likely will never crawl out much past my waist. David, my measure of fortunate doesn't give you the basic you need now. When some basics become 1% better I didn't know how to act. Maybe some of my act here will help you land easier when things actually do get better.

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