Inability to live a normal life.

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.

Hi, @davidinvegas – I'd like to add my welcome to Mayo Clinic Connect. Sounds like you've gone a very long time feeling like your epilepsy is not fully under control. 32 years is a long time to be in that position. About two seizures a month with lots of injuries sounds very challenging. Losing your mother and going through a divorce are also huge. If you look at a life stress inventory like this one, https://www.stress.org/holmes-rahe-stress-inventory/, you will see you have at least three in the top six.

I'd like to introduce you to some members who may understand your situation with epilepsy, as well as members who may have some experience and knowledge related to the emotional side of what you are experiencing with your epilepsy, compounded by these major losses. Please meet @dawn_giacabazi @gailb @hopeful33250 @michele0161 @burner12 @lmcquade.

@davidinvegas – you mentioned feeling scared. What is making you feel scared the most at this moment?

REPLY

Hi @davidinvegas. Sounds like a roller coaster. Life sure throws us plenty of punches without adding in our own health problems. You have had a lot of huge life changing events that would leave many feeling lost and afraid. Reaching out to a community like Mayo Connect is definitely a step towards finding comfort and plenty of caring people around who love to chat and support each other. Even if it’s just a shoulder to cry on. A virtual shoulder of course. I to have seizures but was blessed to have discovered Mayo Clinic. After 10 years of seizures daily, I was admitted in their Seizure clinic, I am now Seizure free.
If you want to share, I would be interested in what kinds of treatment you have found successful?

Prayers for better days!
Dawn

REPLY
@dawn_giacabazi

Hi @davidinvegas. Sounds like a roller coaster. Life sure throws us plenty of punches without adding in our own health problems. You have had a lot of huge life changing events that would leave many feeling lost and afraid. Reaching out to a community like Mayo Connect is definitely a step towards finding comfort and plenty of caring people around who love to chat and support each other. Even if it’s just a shoulder to cry on. A virtual shoulder of course. I to have seizures but was blessed to have discovered Mayo Clinic. After 10 years of seizures daily, I was admitted in their Seizure clinic, I am now Seizure free.
If you want to share, I would be interested in what kinds of treatment you have found successful?

Prayers for better days!
Dawn

Jump to this post

God has a purpose for you You are gonna be living a new chapter of your life I hope you have disability income. I hope you can get to live with a roommate that can help you Please do not give up!

REPLY

@davidinvegas, I understand what it means to feel like coping is a full-time effort, leaving one feeling so different or even outcast from the normal routines that other people follow. My life is complicated by both mental and physical, chronic problems that require constant attention on my part to be able to function daily. I don't like it, but I have learned to accept it, and I do have those days that cause me to pause and wonder why I it has to be so hard. Our lives are informed by every aspect that we face as challenges and in victories, and you have been through things that other people cannot relate to with your illness. Some of what you describe is what happens to many or most people in their lives, so try to remember that you are not going through those any differently than others but have also come through despite facing obstacles. If you are able to do so, pursue whatever avenues are available to you to address the seizures, to seek out care for feeling depressed, and to plan for a future that can hold many possibilities that today might seem remote. The path to having things turn out in a different way is to do things that may help to realize those changes. Expressing your feelings here and elsewhere is a great way to begin.

REPLY
@lisalucier

Hi, @davidinvegas – I'd like to add my welcome to Mayo Clinic Connect. Sounds like you've gone a very long time feeling like your epilepsy is not fully under control. 32 years is a long time to be in that position. About two seizures a month with lots of injuries sounds very challenging. Losing your mother and going through a divorce are also huge. If you look at a life stress inventory like this one, https://www.stress.org/holmes-rahe-stress-inventory/, you will see you have at least three in the top six.

I'd like to introduce you to some members who may understand your situation with epilepsy, as well as members who may have some experience and knowledge related to the emotional side of what you are experiencing with your epilepsy, compounded by these major losses. Please meet @dawn_giacabazi @gailb @hopeful33250 @michele0161 @burner12 @lmcquade.

@davidinvegas – you mentioned feeling scared. What is making you feel scared the most at this moment?

Jump to this post

My roommate has not and does not look like he will be paying any. Looking another friend. Afraid of being alone, more alone than I have ever been. My wife and kids seem to be growing farther away from me. I was a stay at home dad for about 10yrs with my mother in law. I screwed up and went and lived with my mom. Turned out she needed me to take care of her, kind of a blessing. With her every day 24hrs a day till the moment she passed. Could not afford mortgage so sold her house and bought a condo. Had a friend move in, was comforting not being alone but his problems are now turning into mine. I've spent money that was put away for bills untill I hopefully start getting disability. He is more comfortable in my house than me. Going to nv job services this morning, scares me traveling on my own. Hope working won't mess with chances of getting disability. I've been looking for

REPLY

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.

REPLY

@davidinvegas , you have an inventory of things that you need and/or want to do, and that's a good thing. I cannot think of anything better than working with your present doctor on an approach that may work for your seizures along with consideration of Mayo as well.

I agree that a new roommate will smooth your situation with finances and compatibility, just be careful on how you select somebody, verify references and resources, and be clear about your own expectations. I don't mean to scare people away, it's just that there are plenty of people out there that could take advantage of you aren't careful. Having some questions on paper ahead of time, meeting with a third party who can serve as support, both of these things could serve you well on that front.

I think that you can work while on disability, but there are income limits that apply. It would be a good idea to check that out to avoid getting into trouble with having to pay back money or losing your eligibility. There are some jobs that encourage persons with disabilities to apply, and those can be special workplaces that you can look for in your search. Try not to worry about this too much before you take those steps like traveling on your own or building up undue anxiety in the process. Be deliberate and you will find it a bit easier, don't roll up everything into a ball of fur that has you choking on the experience.

You do well to remember the positive things in your life, I'm happy for you to realize it. Talk to your therapist about how you see things moving ahead. Have a productive and safe journey today.

REPLY
@guener

@davidinvegas , you have an inventory of things that you need and/or want to do, and that's a good thing. I cannot think of anything better than working with your present doctor on an approach that may work for your seizures along with consideration of Mayo as well.

I agree that a new roommate will smooth your situation with finances and compatibility, just be careful on how you select somebody, verify references and resources, and be clear about your own expectations. I don't mean to scare people away, it's just that there are plenty of people out there that could take advantage of you aren't careful. Having some questions on paper ahead of time, meeting with a third party who can serve as support, both of these things could serve you well on that front.

I think that you can work while on disability, but there are income limits that apply. It would be a good idea to check that out to avoid getting into trouble with having to pay back money or losing your eligibility. There are some jobs that encourage persons with disabilities to apply, and those can be special workplaces that you can look for in your search. Try not to worry about this too much before you take those steps like traveling on your own or building up undue anxiety in the process. Be deliberate and you will find it a bit easier, don't roll up everything into a ball of fur that has you choking on the experience.

You do well to remember the positive things in your life, I'm happy for you to realize it. Talk to your therapist about how you see things moving ahead. Have a productive and safe journey today.

Jump to this post

Thank you for encouragement. I'm up and ready to go and see welfare about food stamps and help with job search. The roommate is still sleeping. I'd like him not to be here while I'm not here because 5x he has gotten drunk while I was either in hospital or just out. I had 2 things I asked of him when he moved in. No drinking here or being here drunk and need rent. I'm really being taken for a ride here. Need to check my legal options. Thank you for your advise, helps a lot.

REPLY
@davidinvegas

Thank you for encouragement. I'm up and ready to go and see welfare about food stamps and help with job search. The roommate is still sleeping. I'd like him not to be here while I'm not here because 5x he has gotten drunk while I was either in hospital or just out. I had 2 things I asked of him when he moved in. No drinking here or being here drunk and need rent. I'm really being taken for a ride here. Need to check my legal options. Thank you for your advise, helps a lot.

Jump to this post

@davidinvegas Welcome to Mayo Connect. We are sure glad you are here, and that you are looking at your situation, and figuring out how best to approach things. That takes a lot of courage, just by itself! Like others have said you have had many challenges. I bet seeing the way you have handled things as you write it down on paper for us to see has make you feel better, too. It's hard to think a roommate might do you wrong before they even move in, so it's understandable that you feel so disappointed in your current roommate. Are there any Social Services that you can reach out to that will help you get a decent roomie? We hope that you will let us know how you are doing and you know that we will always encourage you!
Ginger

REPLY
@davidinvegas

Thank you for encouragement. I'm up and ready to go and see welfare about food stamps and help with job search. The roommate is still sleeping. I'd like him not to be here while I'm not here because 5x he has gotten drunk while I was either in hospital or just out. I had 2 things I asked of him when he moved in. No drinking here or being here drunk and need rent. I'm really being taken for a ride here. Need to check my legal options. Thank you for your advise, helps a lot.

Jump to this post

@davidinvegas – just wanted to check in and see how things went with seeing welfare about food stamps and help with the job search? Have you had any seizures in the last week or so?

REPLY

I suffer from anxiety for the first time in my life and I’m 40 years old! I have been nauseous for 8 months now and tried various meds and for 8 months I have been taking Xanax or clonopin but now it’s only Xanax! I had my gallbladder out 3 weeks ago hoping that would cure the nausea but it hasn’t! I’m sick all of the time and it’s making it hard to want to live and enjoy life! Does anyone else suffer from anxiety and have nausea all the time? I have had major tests done to rule out other issues and otherwise I’m “supposedly” healthy! I take zofran for nausea every day several times a day! I feel like I’m getting addicted to Xanax and needing more! Please any suggestions?? Thanks

REPLY

Bless your feelings and heart. I can identify with your anxiety as I've suffered with anxiety since I was a child. I've many diseases and take many medications, .I'm fortunate to have excellent Doctors, Therapists and a therapy group that I attend twice per week. I believe anxiety and depress ion effects our physical health more than we understand. I have finally accepted my mental and physical conditions which has brought peace and serenity. I pray for you to learn and understand that life can bring many beautiful things by working with your support people, May 2019 bring good to your life.

Charlie

REPLY
@lisalucier

@davidinvegas – just wanted to check in and see how things went with seeing welfare about food stamps and help with the job search? Have you had any seizures in the last week or so?

Jump to this post

Getting food stamps and help with power bill. Job interview on Thursday. Oh boy. Haven't really worked for 10yrs or so. Stay at home dad. Back with theripest. Little thinking problems but no big probs. Thank you so much.

REPLY
@charlie75

Bless your feelings and heart. I can identify with your anxiety as I've suffered with anxiety since I was a child. I've many diseases and take many medications, .I'm fortunate to have excellent Doctors, Therapists and a therapy group that I attend twice per week. I believe anxiety and depress ion effects our physical health more than we understand. I have finally accepted my mental and physical conditions which has brought peace and serenity. I pray for you to learn and understand that life can bring many beautiful things by working with your support people, May 2019 bring good to your life.

Charlie

Jump to this post

Wish there were more therepy groups here. Therepy is very helpful. My anxiety really gets bad after siezers. It's like three steps back. Mentally it's harder to recover than it is physically, like you said mentally not feeling good makes you not feel good physicaly. Then just can't get out of my head that there will be more, just matter of time. Just a big circle. Trying new things and a day at a time. Right.

REPLY
@charlie75

Bless your feelings and heart. I can identify with your anxiety as I've suffered with anxiety since I was a child. I've many diseases and take many medications, .I'm fortunate to have excellent Doctors, Therapists and a therapy group that I attend twice per week. I believe anxiety and depress ion effects our physical health more than we understand. I have finally accepted my mental and physical conditions which has brought peace and serenity. I pray for you to learn and understand that life can bring many beautiful things by working with your support people, May 2019 bring good to your life.

Charlie

Jump to this post

I have some of the same things. My ibs and diarrhea are the word t right now and my husband had a terrible cold right now

REPLY
Please login or register to post a reply.