Working/living well with epilepsy

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missus

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Hi everybody,

Am new here, first time writing, can't wait to share. I'm reading a lot about how to cope with this leech that is epilepsy and EXPERTS (I will refer to them in capital letters cos they're soooo knowledgeable) all seem to agree that rising early, exercising, eating well and then meditate (relax) will help manage your condition.

And that's great advice! But I have the hardest time fitting this in reality. Cos you see, in reality, I am either on my way to work, working or sleeping. Working full time requires my whole amount of energy. I am gone from 10:30am to 8:15pm, Monday through Friday. I am SO exhausted at night I usually don't have the energy to cook my own dinner, let alone do chores around the house. I will usually collapse around 10:30pm and will sleep til the alarm wakes me up again.

I was wondering if any of you guys cracked the code of living that perfect way of life while actually LIVING. Cos for me, it's work work work and sleep. No energy for anything else. If I were to follow their advice on healthy lifestyles, I wouldn't finish my day at work.

Sorry for the long thread but as you can see, I don't cope with this too well. I want to feel strong and healthy but I need to work to live. How do you do both?


Missus
 
missus

That is an easy question answer, you cannot do both, at lest I cannot. Your right that is good advice until you try doing it, there is only 24 hours in a day and you have to sleep. If you ever figure this out make sure you let me know your secret.
 
Thanks, at least I don't feel like the one retard who can't figure out the easy puzzle. And I WILL keep looking and share the secret when I find that Holy Grail of knowledge. I could write a book! I think I'll call it: The Secr...aaah no wait, it's already taken...
 
Hey Missus,

I had that 10:30 - 8pm type schedule before i had seizures and even if you don't have seizures, that schedule sucks. Like you say, not enough time for yourself. Can you get that changed? My day starts at 6am, and i'm out the door by 8am. There is 2hrs of my time, granted 1/2 of that is just starting the day and getting ready for work. I get home at 5:30pm, so that gives me 4.5 hrs of time for myself, including cooking, looking at computer, and playing piano, going on a date, or whatever. Then by 10pm -10:30pm i'm wondering of to my bed. It's not the best schedule, but it works for me. Then the weekends are all Mine, unless if i'm oncall for work.

:piano: :pop:
 
Ay you're right, that schedule does suck. Your typical day sounds pretty nice and active. Hopefully, I'll get meself one of those soon enough!
 
Hi missus, welcome to CWE :)

I think you've already seen how great our little community is for advice and support!

That's a hard schedule to live with- whether you have to live with a condition or not. Many people don't have room in their lives for personal/free time, and it really is wearying. I doubt there are many people in the rat race that have much 'me-time' during the week.

I've just turned my back on a successful IT career because the overwork and the extra hours that were simply 'expected' had caused my seizure rate to triple in the past year.

As Zolt says, try and make the most of those precious weekends ;)
 
SlimBlue

Precious indeed! I've been fully booked for the last 3 months!! Can't stand anybody anymore!!! Thankfully, autumn is on the way and things will die down naturally. Helloooo me-time!
Your story is hard to read. It reminds me how often you have to redirect your life or change your plans with this condition. Challenging isn't it? I'm sorry to hear that, wish you the best.
 
Cheers missus, but no need for sorrys- now I've had a chance to get used to it, I feel great having finally done it. I've gone from overworked cubicle-nerd to sun-bronzed beach bum, and if that isn't the best treatment for E then I don't know what is :)

Yeah it was a bummer at first, but like you say- you get used to being more fluid than most with your plans and expectations- and that, like the strength you were talking about earlier, is another benefit of E..

The only way I can suggest to cope with it in full-time employment, is to try for a better schedule if possible (aren't there disability laws up there about telecommuting and such? Is that possible with your job?).

The other suggestion is work for yourself, and set your own hours. I know there are a few people on here that have managed to deal with it like that :)
 
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SlimBlue

Yes I could work earlier I suppose, but that would be pure chaos (I work in a BUSY restaurant that opens at 7am). Don't worry too much about it anyway, I plan on moving in a few months. Hoping a smaller town will bring me a slower pace of life. Running around like a headless chicken ain't for me I'm afraid! I must be getting old....

I like where you're going with that ''work for yourself'' thing. It's all about being useful isn't it? I think sick people crave that a lot.

Thanks for the suggestions!
 
If you can manage it financially (and your job allows it - easier to get the approval when you're associate with a union), consider dropping to part-time. Even a 0.8 FTE work schedule will give you a couple of more extra hours in the day. Generally benefits (ie. medical and dental) are the same whether one is full-time or part-time. See if your workplace will allow this first, and then work out the numbers to see if you can afford the drop in pay. And if this doesn't work, be pleasantly persistent with your boss/supervisor regarding a schedule change. While I am not generally one to advocate using epilespy as an excuse for anything, if you feel that your schedule is contributing to worsening of your seizures (severity, more frequent, etc.) then that needs to be addressed and you may have medical justification for seeking a change to your schedule.
 
Defiantly :)

I was on disability benefit for nearly a decade, in a crappy council bed-sit, and it nearly drove me crazy. I was desperate to finish my degree I'd been so rudely forced from, and get the IT job I'd always wanted. So that's what I did- just turned my back on the benefit and went for it :)

Now I've got it and been working for 5 years and proven to myself I 'could have done it' it's not quite so bad now I've had to stop because things were getting too much.

I'm going back on disability, but living in a cheap coastal town, and I'll be offering my services to various local charities etc that need an IT man- like you say, gotta be useful ;)
 
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Masterjen

Pure sens and wisdom coming out of you. Unlike you though, I think you should use epilepsy every time it can serve you. Since it's always there to kick you in the hole and bar your way; make it an ally sometimes! Yes, I'm a mercenary.

And you know what? I used to work part-time before. LOVED it! But like you said, it's only good if the finances allow you.

No benefits where I work but I'll keep in mind everything you've said. Smart advice. Thanks!
 
SlimBlue

Jaysus! So disability benefit is like the dole for ''special people''. Yeah...been there. It doesn't feel too good. But at least you were working on something. I was just waiting to get better.

And living in a cheaper place is a good start for a better life I think (probably even more true for ''special people''! hehe).
 
masterjen said:
Generally benefits (ie. medical and dental) are the same whether one is full-time or part-time.
Click to expand...

That is not the case in the USA. If you want benefits, you need to work full time. If i could work part time and get benefits i sure would.

But with this new Obama care thing, they say you won't need to work in order to get your benefits, but not sure how true that is. Just like the "u can keep your personal doctor" was an incorrect statement.

:piano: :pop:
 
Lmao @ 'special people dole' :)

It's a quiet little coastal town, with that mellow lifestyle you were talking about, I have a wonderful sea-view from my window, and the beach is 30 seconds walk away- suddenly 'dole' isn't quite so bad, huh? ;)

Tbh, full disability isn't too bad really (well, compared to unemployment) and I've never been one for needing lots of money. I have ways of making more if I need it, but the big thing is my seizures are at their lowest rate in years, and all my time is well, my time :)
 
missus

SlimBlue has the right idea when he says "all my time is well, my time". nice view you have.
 
SlimBlue

Fair enough, it does sound nice. I'll go back to my one bedroom apartment facing a wall now. Yay big cities.
 
Fedup

Yeah, SlimBlue is definitly winning at life here. I bet you have the Cliffs of Moher behind your house? Can't say I'm enjoying my wall view here. AND I'm working my way to see that!
 
You've got the right idea though- you said you were planning on trying life in a mellower small town. It can be a drop-down after life in a big city, and I'm guessing you might have to take a pay cut?

Well sod it. Money's not everything, you've gotta do your best to look after yourself- nobody else will do it for you..

If you're working in a restaurant- and that's your chosen profession, with food- have you seen these new mail order connoisseur meals you can order online just for one, or a small dinner party? Maybe that might be a way to work for yourself.. Just a thought ;)
 
missus

Sorry missus I am not as lucky as SlimBlue but I have been around there a few times but if I drive 5 minuets I am out in the country side again, I live in a big town (Irish town) a lot want to make it a city :roflmao: a city they need to get out more.
 
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