What should I do?

[picklenose]

I need opinions here. I don't know any of you folks but I figure there must be some people here who can identify with the problems I have. I need lots of opinions. Whatever you think, I'd rather hear it than not. Even if it's not exactly polite.

I don't know what to do with myself. I feel like I'm just stuck. I have two major problems. Well, actually, three -

1. Epilepsy

2. Social anxiety (Which is exacerbated by the epilepsy)

3. I'm unemployed and have been since 05.

Now, here are my other problems. They all kind of join together and make a sort of "death of a thousand cuts" to my quality of life -

4. My epilepsy is just bad enough that I have a TC about once every few months. However, I have what I believe to be myoclonics and some other kind of "fear" seizures probably at least once a day (usually while going to sleep).

5. This means I probably don't qualify for disability as I understand it. I have never applied for it so I don't know this to be a fact but I have heard many times that it's difficult to get and the requirements for it on the web sites I've looked at for people with epilepsy look really hard.

6. Because of these factors, I'm still living with my parents. I just don't know what else to do.

7. I don't drive. This means I have to ask my parents to drive me whenever I want to go somewhere.

8. My mother is the dominant personality in our household. Unfortunately, though she tolerates me being here and is good to me, she doesn't really understand my problems. She doesn't understand social anxiety AT ALL. And she certainly doesn't understand how it combines with the epilepsy to be virtually paralyzing.

9. I'm not stupid but I have a tough time learning new things and even when I succeed at doing so, I generally forget anything I learn within a week or so of not using the knowledge. I'm terrible at math (And I'm not exaggerating. I mean I have a tough time with 3rd grade math and always have), have a short attention span for most things and just really have no marketable skills and no interest in anything of any value. Even if I could break out of my social anxiety, potential employers might be reluctant to hire someone who is certain to have at least one seizure a year and they are not known for their patience with people who don't catch on to new things quickly.

10. My mother just rides me all the time about getting a job or going to school. I feel like I have to hide in my room because she says something every time she sees me. I have tried to explain things to her but she just doesn't get it. She wants me to go to a neurologist and try and get the OK to get my license back. First of all, I have explained to her many times that I'm not comfortable putting myself and others at risk even if I could get it back. I just think it's dangerous and a bad idea.

But when I ask her to take me somewhere, she resists (Usually refuses) because she is trying to motivate me to try and get my license back. This is unbelievably upsetting and depressing because sometimes, I just want to go out and get some sun and walk around in a store like a normal person. It would help my state of mind. I can't think straight when I'm depressed. I understand she's older now and she has diabetes and she often doesn't feel well. I just wish she could understand that I need her.

11. I think she believes I'm malingering. I mean, she knows the seizures are real and she knows pretty much when I have them but she really doesn't get the way epilepsy affects my mind. Because I seem intelligent in my own way, she doesn't see how this is preventing me from doing things most people do. Indeed, even many people with epilepsy do things I can't because it affects everyone who has it differently and some of the things about my epilepsy (and about me in general) that are unique to me make my situation quite unique.

12. She also thinks I'm smarter than I am. It's just that simple. I don't know how to make her understand that she's wrong. It's denial, I think.

I will leave off here to see what kinds of responses I get. Like I said, I really need advice, opinions, anything. I figure that if there's any place in the world where I could find people who know (Or have some idea of) what I'm talking about, it would be here.

 

[Zoofemme]

Hi picklenose...if you do a search on disability you will find it widely discussed on the forum. Yes, you will get turned down more than likely the first time you apply, that is standard operating procedure for social security. Once that happens, you then go to a lawyer who specializes in social security disability and have them file an APPEAL for you. Remember this...if you have worked, you paid inot social security, if you get disability you are just withdrawing your money a bit earlier than most...it is not charity.

Considiering the frequency that you have seizures your dr probably wouldn't let you have your license back...depending on the state it might be their decision though. I know my dr wouldn't let me have mine and I'm currently on another 3 month suspension in the state I live in now.

Some of us are unemployed on here, some of us aren't. I've been at various levels of employability (is that a word?). I've been banned completely from working for as long as 8 yrs by my dr, I went ahead and tried to work anyway for 2 yrs and, um, that sorta contributed to the mess I'm in right now according to my dr. and now I've had all kinds of limitations put on me and I haven't a clue how I'm suppose to work and make any money at it. There are a few of us who have even run into the brick wall of the stigma that E still seems to have around it.

As for having E itself...I can't speak for others but I tend to ride a rollercoaster with it. There are times when I resent the heck out of it...especially when everything seems to be going great and then it all just falls to pieces. I'm in that place right now. It feels like I've been newly diagnosed again. There are other times when its no big deal. I have it, I deal with it, have been for a long time, it isn't going to go away, its just part of who I am. That is usually when I haven't had a seizure for several months, lol.

Ask questions, do searches, vent in the padded room whenever needed...folks here are great and help when they can

 

[Cint]

Hi picklenose,

I'm sorry to hear about your issues with your seizures and your mother.

First of all, have you seen a neurologist and have you had testing for seizures done? Is there a possibility your mother could accompany you to the neuro and have the dr. explain the seizures and the complexities that go along with it. And for many of us, anxiety, depression do go along with epilepsy, so that does need to be addressed also. I commend you for taking it upon yourself and not wanting to drive. I wish your mother could see the importance of that and give you more support. I also have diabetes along with epilepsy, so I know what diabetes can do to a person and your mother doesn't need to use that as an excuse. Both disorders can be disabling. I have gone years without being able to work, due to the seizures and depression. I also have gone as long as 10 years without being able to drive. Oh yes, I almost forgot... ... my memory is bad now, as is my concentration.

 

[picklenose]

Remember this...if you have worked, you paid inot social security, if you get disability you are just withdrawing your money a bit earlier than most...it is not charity.

Unfortunately, I'm 36 and only worked for about 4.5 years last time. That's the longest period of continuous employment I've ever had. I would say that I've worked less than a total of 7 years total in my life. Don't you have to have paid a certain amount before you can do anything?

Ask questions, do searches, vent in the padded room whenever needed...folks here are great and help when they can

Thanks

 

[picklenose]

Hi picklenose,


First of all, have you seen a neurologist and have you had testing for seizures done?

I had a few tests done when I was in my teens but I wasn't very cooperative. I was still pretty much in denial about the whole thing then. I don't think they found anything.

Is there a possibility your mother could accompany you to the neuro and have the dr. explain the seizures and the complexities that go along with it.

Oh, I'm sure she'd go along if I went to one but I don't know if we can afford it. What would we be trying to accomplish? That's one thing that's held me back from seeing a neurologist. I just don't know what they could do for me at this point. Just paying for the visit would be a sacrifice. We really wouldn't be able to afford any tests unless they had a specific goal that was going to accomplish something.

 

[Zoofemme]

Unfortunately, I'm 36 and only worked for about 4.5 years last time. That's the longest period of continuous employment I've ever had. I would say that I've worked less than a total of 7 years total in my life. Don't you have to have paid a certain amount before you can do anything?

Because of your age, you had to have earned 20 "credits" during the time you worked. You would have to look up the amount required to earn a quarter credit for the years you worked (it varies from year to year). The most credits you can earn each year is 4. As long as you made enough each of the years you worked to earn all 4 credits you should have enough credits (7x4=28 ). Everyone should get a statement every year from Social Security informing them how much they have paid in and how many credits they have earned. If you haven't received one you can request one online by going to the social security website www.ssa.gov

I should also add...credits are not based on how long you worked on a job but rather by how much you paid in. So, for example, in 2007 the amount required to earn 1 credit was $1000.00. If you worked in 2007 and made only $4000.00 you would have made enough to earn your 4 credits for that year.

You can go hear to calculate your credits if you wish:
http://www.ssa.gov/OACT/COLA/QC.html


Hope that helps

 

[Nakamova]

Hey picklenose --

I'm sorry you've got struggles on multiple fronts. I do think it would be worth seeing a neurologist, not only to educate your mother on what you're experiencing, but also to evaluate your current treatment. If you're having daily fear seizures, and occasional tonic-clonics, then there may be more that can be done to help you achieve seizure control. In addition some of the meds you are on now (I assume you are on some) may be exacerbating your anxiety, so it's worth re-evaluating them in that light as well. Your neurologist or G.P. may be able to refer you to a therapist who can help with the social anxiety. And you should check with your local government to see if here programs that may help you to find employment.