What is "unable to work"?

[Matthew74]

How do you guys understand "unable to work"?

I think the question comes down to how much misery you are willing to put up with to do whatever job it is you can get. Almost anybody can do something.

Take my dad for instance. He worked full time my entire life, made good money, and was working 50+ hours a week when he died. He was in his 60s. He also had a very serious medical condition from the time he was a child, and nearly died more than once. He had an artificial heart valve (several actually), and had 5 or 6 open heart surgeries. He had two strokes, and lived most of his life with effects from the first one. In his last years he had severe problems with atrial fibrillation. He died during his last open heart. I know that it was because he was working too hard that he got sick, his heart valve got infected, he had a stroke, had to have the operation, and eventually died. It was a miracle that he even saw me and my sister grow up, and more than one doctor told me as much. He was not "disabled", and I think he even liked working.

What am I supposed to think of this? I know that people, healthy or otherwise, do all kinds of crazy stuff to work, and keep doing it even if they are thoroughly miserable. I don't feel like I can compare myself too closely to my dad, but I just use him as an example I am familiar with. You can substitute yourself, or someone you know, as an example.

 

[Belinda5000]

mathhew
I'm not able to work stress brings on my sz's really bad and some ppl just have absence sz's or there sz's are controlled and other ppl sz's aren't controlled well enough for them to work.The last time I worked my employer was afraid I'dhave a sz fall into the machinery.
Everyone has didfferent control.
I'd love be workingyou can't put everyone in same pot when it comes to there sz's and not being able to work why are you putting people down?

 

[Matthew74]

I'm not putting anybody down. It's an honest question. Why did you think I was putting anybody down?

My dad worked himself to death, and I told him as much before it happened. I miss him very much.

 

[masterjen]

I'm not putting anybody down. It's an honest question. Why did you think I was putting anybody down?

My dad worked himself to death, and I told him as much before it happened. I miss him very much.

You didn't come across as putting people down to me, Matthew, so I wouldn't worry about it.
I think the statement "unable to work" comes from how flexible employers are when it comes to putting up with someone who might call in sick frequently (most not very flexible), how much of your job might put you at risk for triggering seizures (eg. stress, as Belinda mentioned), and how much of a risk is imposed should you have a seizure at work (eg. risk of injury to yourself or others).
Our parents are from a different generation. The did not (likely) have the benefits that are currently available, such as pension plans, disability insurance, unemployment insurance, etc. and they grew up with the knowledge that if you don't work, you have absolutely no money. And even though later in their careers such benefits may have started to become available, they haven't been in the system long enough to accrue much money in various insurance plans, savings plans, and so on. So as our parents became older, instead of opting to retire early, they continued to work even if it was not in their best interest health-wise to do so.
I agree almost anybody can do something, but employers don't want someone who might call in sick frequently, or who might potentially put themselves or others at risk. In some cases it is the doctor who states that someone should not be working. Some people will make such a situation adapt to their own needs, and develop a business from home that they can do when they are able.
I am currently unable to work in my profession due to frequent seizure activity. It is demeaning for me at times; I am a highly trained professional in the medical field - I went to university for 7 years to do what I do, and now I have to say "I can't do that right now". Fortunately during the 20 years I was working, I was paying into a disability insurance plan, not thinking I would ever need it but certainly understanding the potential value of it. I keep busy by volunteering in an area somewhat related to my profession and I take distance and online education in my field to keep me up to date. Life is what you make it

 

[Penny]

I'm with Belinda, I felt a little put down.

"I think the question comes down to how much misery you are willing to put up with to do whatever job it is you can get. Almost anybody can do something"

I cant work. Havn't been able to since 2000. I am considered "permanently disabled". For work yes. For life, no. I still will live my life the way I can and am able but work wise I cant. My disability does'nt even have to deal with epilepsy although when I get my next review my dr. wants that and stroke put on it too. My disability is for Bipolar 1, Complex PTSD, BPD. I worked 26 years before finally quiting but I could no longer teach children. I have a daughter who "flips burgers" and I would say its one of the most strenuous of all jobs even though most say that anyone can do they just don't want too.

 

[Belinda5000]

matthew,
I'll tell you why I think your putting me down.

You come off like I don't want to work.I'd love to work but the stress sends me into sz's so bad and mine end up being tonic-clonics and they would also be simple partial.I have no aura before I have a seizure either it can just hit for no reason I'm refractory.

 

[Matthew74]

Belinda and Penny (and anyone else out there),

I did not mean to hurt your feelings. I'm sorry that I did. Nothing was further from my mind.

I'm trying to decide if I am really able to work. It's a problem and I don't know what to do.

What you said hurt my feelings. I was looking for help figuring things out, and get told I'm "putting people down". I'm going to have to give up posting because every time I look for help, I get accused of some personal fault. I post and ask questions because I know there are other people here with experience I can benefit from, but I'm not going to continue if it just aggravates people.

:giveup::giveup::giveup:

 

[Topcat]

Matthew - you have to look into your own heart and decide if you can work or not. I was working at a job that I liked when I had an accident that caused a closed head injury that lead to tonic clonic and simple partial seizures. I also have memory loss. Sometimes I think I might be able to go back to work then I wake up on the floor. And as has been mentioned in many cases stress can lead to more (or worse) seizures.

 

[walkerjm3]

My manager is the one who suggested I sign up for FMLA through our company and also try for at least partial disability through Social Security. I joked with her that she was trying to get rid of me, but I know she's just trying to help. She's very understanding about it. I didn't go to work yesterday because I felt so worn down. I work two jobs and only have Saturdays off. Stress definitely makes me more likely to have a seizure as I had four at work on Thursday.
I see my neurologist at the end of the month and I'm going to discuss him filling out the papers for me. It's not that I don't want to work, but I'm finding it harder to get everything done like before. I come home completely exhausted. I've been forgetting to do things that I tell people I will as I thought that I've already done them.

 

[Penny]

Matthew,

Don't look at anyone elses life (ideas are good) for wether working or so on is ok for you. Everyone is under a different situation and challenge. Come from your angle as far as what is good for and what you are able to do. I hear you saying how much you admire your Grandfather for what he was able to accomplish. I was just talking to my mother about how proud I am of my ancestry (I've been studying it). Their life was different than ours though. Times were simpler (in some ways) , especially social lives. They are so pressured now. The pressures we have now can cause more seizures and new physical surroundings more dangers in our jobs and so on.
Please don't leave, we all misunderstand one another at times. I'm sorry if I made you feel bad. Maybe I could have reworded some of what I said to make you understand what I was saying. Not upset though!

 

[Matthew74]

Penny, That's ok, no hard feelings.

If I really had to say one way or another, I would say that I feel like I just can't work in the real world. I have tried, and while I can keep even a hard job for a while, eventually I get worn out.

The problem is that when somebody asks me if I can work I have to answer "yes", because technically I can work. Under the right circumstances I can work regularly, and it might even be possible for me to make a living, but that's all theoretical. Reality is different. What makes it worse is that I look about half my age and appear fit.

I just started a new job. I'm doing house painting, like I did before. I know the trade better than my new boss. I like her, and she's flexible, but she's also a super-energy, 120%, works two jobs plus two on the side, workaholic. She would be very happy hiring me for whatever hours I could work, but I can't drive and can see it's not going to be that simple. The last week has been totally exhausting, and my seizures, which had been getting better, are getting worse. She's paying me a lot, but I feel terrible.

Before I started work I got denied cash assistance and food stamps. My doctor wrote a letter saying that I could work up to 30 hours a week, in a low stress environment. That means I don't qualify for assistance.

If I keep this job, even at reduced hours, I could loose medicaid. If that happens I'll loose all my health care. I will certainly have to start making payments on my education loans.

I just don't feel comfortable saying "I can't work", because under the right circumstances I can, but I don't see how that means anything. I have tried for years, but I have never been able to make a living. If I'm going to say "I can't work", I have to convince myself it's really true.

 

[Cint]

My father had his stroke when he was 69 years old and until then, he was still working. That was 16 years ago. Now he has kidney failure, too, so has to go to dialysis 3 days a week and also has dementia. We nearly lost him to pneumonia several times. But he doesn't realize how bad the situation really is and thinks he can still do things like he did years ago.

Myself, on the other hand, haven't worked since my children were born. I used to be in the airline industry and was married to a pilot. Before we had kids, my seizures were under control. But after my 2nd child was born, the seizures increased and after trying meds and then having brain surgery that made things worse, I wasn't able to work full time. I suffered more seizures and depression, one dr. said I was bi-polar, so couldn't hold down a full time job. Plus, haven't been able to drive most of the time. And also suffer from migraines.

BTW, I wasn't offended by your remark(s). My nephew is bi-polar and is on disability. But he is very creative and is an artist. Like you said, we all have something we can do. I write poetry.

 

[kirsten]

Since you have an academic background: A friend with a philosophy master's makes a living as a freelance tutor. He makes an absolute fortune tutoring every subject under the sun, on his time, with as many breaks in between as he likes.

 

[Dline]

I am so sad about this topic Two years ago, I was making more money and having the best success of my career in the corporate world. Then that all changed.

I would get lost driving to and from work--commutes about eight miles one way--good thing I can't drive anymore. Many times I would leave meetings and have no idea what was said because I had a seizure before, during, or right after a meeting (complex or simple partial). I could not recall agreements or critical info. I began to miss meetings because I didn't remember them being scheduled. The details of my work, which I had prided myself in, began to severely decline.

So, I began a position in a new company. I had made the change in hopes that this new position would offer less stress and a shorter schedule. I still constantly missed meetings because I could not recall how to get to a meeting room on a different floor, missed deadlines, and was making serious, embarrassing mistakes. Because of the physical and mental toll of the seizures, I needed to take a lot of sick days and because I was having seizures almost immediately after waking in the morning, I was also late to work at least 3-4 times a week. Thankfully I was finally diagnose then, because I thought I was losing my mind.

Sorry this is long, but I have work since age 14 (25 years) and not being able to work is devastating. My first denial for disability letter stated that although I couldn't do the job I used to, I could do "simple work without complex instructions". I am currently appealing this. How can I do even simple work when I can't even retain info (maybe due to meds??) or have a seizure in the middle of taking an order?

My plan is to get better someday and go back to work. Until then, I need assistance. Never thought I'd be here in a million years, and sadly, I have to pray I can get disability in order to keep my house and feed my kids.

I'm not giving up though--there is ALWAYS hope!!!!

 

[Cpeezy]

I didn't find this offensive at all btw. I often see people who may be technically "sicker" than I am (but apples and oranges really when it comes to suffering). For example, I know a woman going through chemo who is still a housekeeper and works full-time. Her family begs her to stop, but, For her, that's what keeps her feeling better and her mind off of her illness. For me, it would be a disaster. I would be in bed resting with my family around me. But that's just me. Some people REALLY love their jobs and it's a source of joy for them, and maybe healing. Also, who knows what's going on in someone else's body and mind and the level of suffering they feel while working. Everyone has a breaking point.

I miss going to Grad school. I miss my editing job. Having a sched. and work makes you feel proud and accomplished, so I can see why many sick people would want to hold onto that in order to avoid their issues or pain.

For me-- All I do is gardening, cleaning, resting, watching TV, going on walks, helping my friend restock things at his store, helping my friend with her baby for an afternoon--and collecting Disability money and food stamps.
I have tried going back to work or school probably three times since Feb. 12 2013 when I had my first episode. But each time it was a serious mistake and placed huge stress on my life (Stress is a trigger for my episodes). I also feel very mentally unclear and even mentally ill. I can't drive.
My emotions are out of control (bi-polar), I also have complex partials, and no way could I be a reliable worker--there's just no way (At least not right now). I find it pretty impossible to make plans and keep them because if I have a "bad day" I won't be able to get out of bed.

 

[Matthew74]

For me it's confusing because my seizures are not something that obviously interrupts my work, they're just sensations. Working doesn't usually result in visible seizures. Obviously having the seizures is bad, but I'm the only one who notices them, and for the most part other people probably are unaware of the effects (like forgetting things, etc.) And, if I'm not working I'm still having them. Sometimes, in moderation, the regular schedule even helps.

The worst part is the fatigue. When I get home I'm too tired to do anything else.

Kirsten: Thank's for mentioning tutoring. I looked into that when I was living near Washington DC, but I needed a car, teaching certification, and/or classroom experience. Red Wing is altogether different, so it's a very real possibility here.

All: Thank you for sharing your experiences with me.

 

[Penny]

Penny, That's ok, no hard feelings.

If I really had to say one way or another, I would say that I feel like I just can't work in the real world. I have tried, and while I can keep even a hard job for a while, eventually I get worn out.

The problem is that when somebody asks me if I can work I have to answer "yes", because technically I can work. Under the right circumstances I can work regularly, and it might even be possible for me to make a living, but that's all theoretical. Reality is different. What makes it worse is that I look about half my age and appear fit.

I just started a new job. I'm doing house painting, like I did before. I know the trade better than my new boss. I like her, and she's flexible, but she's also a super-energy, 120%, works two jobs plus two on the side, workaholic. She would be very happy hiring me for whatever hours I could work, but I can't drive and can see it's not going to be that simple. The last week has been totally exhausting, and my seizures, which had been getting better, are getting worse. She's paying me a lot, but I feel terrible.

Before I started work I got denied cash assistance and food stamps. My doctor wrote a letter saying that I could work up to 30 hours a week, in a low stress environment. That means I don't qualify for assistance.

If I keep this job, even at reduced hours, I could loose medicaid. If that happens I'll loose all my health care. I will certainly have to start making payments on my education loans.

I just don't feel comfortable saying "I can't work", because under the right circumstances I can, but I don't see how that means anything. I have tried for years, but I have never been able to make a living. If I'm going to say "I can't work", I have to convince myself it's really true.

Unfortunately "the system" works against us a lot of the time. My psych told me once that if I went to work and took home no more than $900 a month in addition to my disability ($750 a month) that it would not count against me. The lady at DHS told me differently. I would lose most medical and psych benefits or at least have to pay co pays which would put me way in the whole as at that time I was in the hospital every few months for up to 30 days at a time. Now I have the stroke plus epilepsy added in and because of both couldn't do it anyway but you would think they would help you get out of "the system" than depend on it for life. Then they have "the right" to grouch at us. :twocents:

 

[kirsten]

I have this window open while I'm working so I've been thinking about the question. At the moment, I can't see straight. Everything is spinning a little and I can't walk in straight lines. I'm having one TC a week, and simple partial seizures almost daily. I've been working full time and I've managed to increase my earnings during this seizurish time. Right this minute, I'm working with figures on my desktop, and it's hard to get the mouse to point on the numbers I need. Everything takes three times longer than it used to. In the last week, I've had clients send back three sentences that didn't make any sense, and I've had to rework them so that they aren't nonsense. Clearly I'm managing to produce good work: This is what my client said today: "Sorry for picking all of this up with you now only. I think I was loving the style of the article so much that I didn't scrutinise the meaning and accuracy of everything." So one part of my brain is working jut fine, and I guess that part is having a ball with the work. Bearing in mind that my situation is nowhere near as severe as Penny's I was thinking: would I rather be working right now, or not working? And I would rather be working, not for the sake of anything except my happiness. If I wasn't working, I would be horrifically miserable. I would probably be suicidal.

I'm deeply grateful that I have my work.

So I would say the question is not so much 'how much misery are you willing to take?' I don't know what the right question is, but it doesn't seem to be that.

 

[Penny]

"If I wasn't working, I would be horrifically miserable. I would probably be suicidal.

I'm deeply grateful that I have my work. "

There are days I feel like that Kirsten. Lots of them. There is a nursing home here in town that I am looking into going in a couple days a week just to sit with those who need someone, those with no family. It wouldn't be work but companionship. I could handle that and I'm sure it would be satisfying for both of us.

 

[kirsten]

Penny, when I was bedridden a few months back, I just used to do small things for people and that helped enormously. I'm glad that you have people to talk to where you're living now but I think it does help to feel you're doing even the smallest thing for someone who needs you.