NOT SURE OF THINGS

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Hello All,

As I always start out any discussion I find that I wish everyone well. Right now I am during a big long struggle, and just don't know what to do.

Have had my epilepsy for 40 years. Tough areas I have dealt with is how I don't feel like near family members don't care about my situation. Looking for help.

Brother / sister: Never call, never ask.

Father / Mom: My Mom just doesn't like hearing bad things so she never asks, and my Dad is just there to support her, so doesn't say much.

Right now I am on Keppra & Dilantin. My current neuro is not much to speak with. Feel the Keppra may have been causing some anxiety issues. But in my path towards getting a new job, don't want to rock the boat if it were with a new med.

I am on my own anyway, so if I made decisions it would only be to myself. Back to my folks, they won't ever ask about anything.

My health insurance is not there right now. I have meds to help me out temporarily, but other things could arise.

I have skipped out on some bills, but just trying to get by. Do I ever hear anything from anyone? Don't feel like I have any friends that want to hear it.

I have been looking at things more positively lately(trying). Weeding out the negative nature of things.

I am starting to ramble now. I need to find a really nice church to be around. But am finding that my anxiety is preventing me from that.

Currently unemployed and had seizures on the job with my last two jobs. Financial struggle. Not hearing anything back from anyone on job applications.

Comments

Re: NOT SURE OF THINGS

Submitted by just_joe on Wed, 2013-11-13 - 16:51

One of the many things we have to deal with is what seems like isolation. It is not that they don't want to know how you are doing it is just not a thing that comes up in normal conversation. Don't feel that way since it isn't just epilepsy but diabetica and heart attacks. How many times do you hear hows you hear doing today or is you blood sugar at normal levels today. Or even Hows tour wheel chair getting you around today. You are having to deal with something that can't be seen and if it isn;t seen they others know nothing about it that is until you have a seizure infront of them. There are many people in here dealing with the same issues and in some causes they need to vent.

Also understand that Epilepsy has a stigma which other things do not have. If you look back in history you would see that many people were still being put in homes away from the public back in the 1960's. The old saying is out of sight out of mind. Even in the 1970's there were still some states that would not give marriage licenses to people with epilepsy. Which is why some of the stigma still remains. I have family members that will not bring up anything regarding to the E word. However I do have a couple that will check how my medicines are working. My sis especially ans of course Mom.

As for family members not calling it runs in most families not just in families with a person with epilepsy

Good luck with your job search and do let us know whats happening

Joe

One of the many things we have to deal with is what seems like isolation. It is not that they don't want to know how you are doing it is just not a thing that comes up in normal conversation. Don't feel that way since it isn't just epilepsy but diabetica and heart attacks. How many times do you hear hows you hear doing today or is you blood sugar at normal levels today. Or even Hows tour wheel chair getting you around today. You are having to deal with something that can't be seen and if it isn;t seen they others know nothing about it that is until you have a seizure infront of them. There are many people in here dealing with the same issues and in some causes they need to vent.

Also understand that Epilepsy has a stigma which other things do not have. If you look back in history you would see that many people were still being put in homes away from the public back in the 1960's. The old saying is out of sight out of mind. Even in the 1970's there were still some states that would not give marriage licenses to people with epilepsy. Which is why some of the stigma still remains. I have family members that will not bring up anything regarding to the E word. However I do have a couple that will check how my medicines are working. My sis especially ans of course Mom.

As for family members not calling it runs in most families not just in families with a person with epilepsy

Good luck with your job search and do let us know whats happening

Joe

Re: NOT SURE OF THINGS

Submitted by Stanstedy on Wed, 2013-11-27 - 13:37

Hi Toddsw,

I'm glad you sent in your comments. That's why there is this forum. Each of us has there own personal struggles but as people with epilepsy are things we do share. I have had epilepsy since 1970, following a brain operation.

Sometimes they are more controlled or less so, but they have been chronic. It can affect so many areas of your life.

I have been in the hospital and ER more times than I can remember and lost a number of jobs. I have fallen off of ladders and down steps and injured myself. The long-term side EFX of some medicines can be worse than the seizures.

But what you have addressed is someting additional and equally important...feelings of social isolation, misunderstanding, sometimes ostriazation and lack of care from some people. After 40 years you have been on a long road.

Here are some things that have helped me:

1. Medicines and doctors can help. With the education and skill of physicans and new medicines being tested and prescribed there are many ways seizures can be alleviated. Finding the the right doctor and a fairly effective medicine may take time; since you have had it so long you are aware of this.

2. Friends and family are sources of encouragement and comfort. But understand though that we cannot depend on them for everything you need. It can be exasberrating when our emotions run low to try to understand but we all have limitations; even if many won't admit it. Even so, be willing to ask for practical ways for help from someone.

3. Reaching out beyond our comfort zone from isolation to become involved in an activity or helping others is very healing and takes my mind off of myself. Your posting a comment on this forum is already something you have done! And my answering you has helped me.

4. Know your limitations physically and emotionally and avoid activities or things that trigger seizures. That is not often easy (whew), for me my seizures are nocturnal so if other things are not well they wake me up from sleep. I look very tired. :-). I need to remind myself of this regularly.

5. Watch out for feelings of guilt or shame about your epilepsy. Very often depression goes along it. Once I gave my life to the Lord, I return again and again to the fact that he is sovereign and in control over all things. He knows you and will not forsake you. He knows our pain and will guide us as we seek him. Read and pray from the book of Psalms. Don't worry about "venting", you can be completely honest with God, he will always listen and knows already.

6. Financial struggles can be very pressing for some whose epilepsy is intractible. I am inspired to see there are others who have health issues far worse than me who are persevering. Read "Life without Limits" by Nick Vujicic, a man without arms or legs.

7. Join a church and become connected with even a few individuals there. You will find God's love there and also realize that none of us is really completely "healthy or perfect". Become involved in some outside activity that connects you with other people than your family; you will feel a greater sense of purpose and strength.

8. Refuse to see yourself only as just "disabled" or as an "epileptic". We are more than that; after 40 years for you and me we can see that. Use your "weakness' as a strength to encourage others.

9. Develop a sense of humor. This helps to see things in a different light and can disarm people and bless them in surprising ways.

Thanks for listening. I'm still learning and putting these into practice, too.

Stanstedy (Greg)

Hi Toddsw, I'm glad you sent in your comments. That's why there is this forum. Each of us has there own personal struggles but as people with epilepsy are things we do share. I have had epilepsy since 1970, following a brain operation. Sometimes they are more controlled or less so, but they have been chronic. It can affect so many areas of your life. I have been in the hospital and ER more times than I can remember and lost a number of jobs. I have fallen off of ladders and down steps and injured myself. The long-term side EFX of some medicines can be worse than the seizures. But what you have addressed is someting additional and equally important...feelings of social isolation, misunderstanding, sometimes ostriazation and lack of care from some people. After 40 years you have been on a long road. Here are some things that have helped me:  1. Medicines and doctors can help. With the education and skill of physicans and new medicines being tested and prescribed there are many ways seizures can be alleviated. Finding the the right doctor and a fairly effective medicine may take time; since you have had it so long you are aware of this. 2. Friends and family are sources of encouragement and comfort. But understand though that we cannot depend on them for everything you need. It can be exasberrating when our emotions run low to try to understand but we all have limitations; even if many won't admit it. Even so, be willing to ask for practical ways for help from someone.  3. Reaching out beyond our comfort zone from isolation to become involved in an activity or helping others is very healing and takes my mind off of myself. Your posting a comment on this forum is already something you have done! And my answering you has helped me. 4. Know your limitations physically and emotionally and avoid activities or things that trigger seizures. That is not often easy (whew), for me my seizures are nocturnal so if other things are not well they wake me up from sleep. I look very tired. :-). I need to remind myself of this regularly. 5. Watch out for feelings of guilt or shame about your epilepsy. Very often depression goes along it. Once I gave my life to the Lord, I return again and again to the fact that he is sovereign and in control over all things. He knows you and will not forsake you. He knows our pain and will guide us  as we seek him. Read and pray from the book of Psalms. Don't worry about "venting", you can be completely honest with God, he will always listen and knows already. 6. Financial struggles can be very pressing for some whose epilepsy is intractible. I am inspired to see there are others who have health issues far worse than me who are persevering. Read "Life without Limits" by Nick Vujicic, a man without arms or legs. 7. Join a church and become connected with even a few individuals there. You will find God's love there and also realize that none of us is really completely "healthy or perfect". Become involved in some outside activity that connects you with other people than your family; you will feel a greater sense of purpose and strength. 8. Refuse to see yourself only as just "disabled" or as an "epileptic". We are more than that; after 40 years for you and me we can see that. Use your "weakness' as a strength to encourage others. 9. Develop a sense of humor. This helps to see things in a different light and can disarm people and bless them in surprising ways.  Thanks for listening. I'm still learning and putting these into practice, too. Stanstedy (Greg)                     