The Frustration of E

[knothing]

I got a new boss over the last week and he sat down everyone individually and went through a type of interview process. In the project management field the work can be very time consuming and involved. I let him know about my condition and the meds I take and he understands the best someone not dealing with it at all can. I reassured him that I always plan my work so anyone can take over should the need arise.
Today he asked me to help with a job that would have me work 9 days in a row and as much as I wanted to impress the new boss I turned it down due to how physically taxing of a task this would be and how fatigued I get just on a normal week. He was understanding and appreciated my honesty about it upfront. But for me I feel so ashamed and outright embarrassed that I had to do that. I know it was the best move for me and my family but still it goes against the way I was before the grand mals and the meds. A friend was playing devils advocate and questioned if I am letting it control me. When I gave him a run down of how life has been lately he agreed with the answer(not that I need permission). I still can't help but feel ashamed of not being able to run through brick walls like before.

Is it just me being stubborn or does anyone else ever feel embarrassed or ashamed about limitations that they may have?

[Loopy Lou]

I do. Not very much i must admit, but it annoys me that i got a new bike as a birthday present to me, and now i can't ride it on my own cos i've come off it a couple of times and i keep going into the road. Was going to use it to get to and from work too. My brother gets fed up with me cos i'm overweight and not used to riding a bike (another reason i got the bike) and he doesn't have the patience to wait for me when i get tired.

That was £150 down the drain (not sure but i think thats about $210). It annoys me that i can't work on my own any more and always have to have another member of staff with me. In my line of work thats very inconvenient. Mind you, it means i get every Saturday off. I also tried to tell my boss that i could no longer do 10-14 hour shifts anymore as i'm tired so easily, but she isn't listening so far. Got 3 10-hour shifts over the next 3 days.

And i do feel embarrassed about it. If one of the people i support decide they want to go to the cinema, or swimming or whatever than i have to say they can't go because i can't go with them, and i can't stay in the house at work with the other two clients on my own. I can't take them to doctors appointments, dentists, anywhere they need to go. I still enjoy the job a little (hey, it's work!) but it's just not the same job i applied for anymore, and i no longer get any of the "benefits" that go along with it.

Don't get me wrong - i normally look on the positive side, but lately these things have really been getting to me. We are only human after all and it can be frustrating for someone who normally does whatever they want to have certain restrictions. I suppose it takes time to get used to.

[jgbmartin]

Ultimately it is us that have to deal with the outcome if we push ourselves beyond our limits....and we are the only ones that really understand our limits. There has been times that I was hanging out with friends and it got late and said I had to leave...they were "awww, its not too late" and then I have to explain the importance of sleep to prevent seizures. I think it is a little embarassing...but I think it may be more embarassing for them as it shows they are uneducated about seizures. But I am more embarassed if I have a seizure.

[Nakamova]

At this point I've reached a certain level of acceptance with E. Mostly I get frustrated by not being able to be spontaneous about certain things.

[knothing]

It is very sad that I can say the following : I am glad that I am not the only one that feels embarrassed or frustrated by this.That being said, it is great to know that people do reply and that we are not alone. I will continue to push past the embarrassment and frustration the best I can but I can now feel better about it knowing that I have support like this.......Thanks for being there.

[RobinN]

Loopy Lou - why not get the attachment to turn your bike into a stationery bicycle.
http://www.1upusa.com/
You can then get into shape, lose weight, and show your brother who is boss. Make a goal to do a bike 50k or something similar.

[hawke86]

I know the feeling and where you're coming from.

[epileric]

I had what for me is a HUGE seizure an hour & a half after waking up & had to go back to sleep. Slept for 2 hours then had another seizure 45 minutes after waking up. I've been just dazed for most the day & feel the frustration of feeling totally unproductive.

[Loopy Lou]

Loopy Lou - why not get the attachment to turn your bike into a stationery bicycle.
http://www.1upusa.com/
You can then get into shape, lose weight, and show your brother who is boss. Make a goal to do a bike 50k or something similar.

Wow... you can do that? I've got to get me one of them and then i could ride my bike in my room! I've managed to lose a stone in the last month, but i really need to get fit. I'm going to see if i can find something like that in the UK.

Thanks! I'm not comfortable with going to the gym, so this would be perfect!

[Meetz1064]

hear you're having a rough day, Epileric.

LoopyLou, I think RobinN's suggestion is great. It actually sounds like a great deal of fun........but I have a silly question. What is a "stone" equal to in American weight? I've heard of kilos of course, but never "stones".

Knothing--I can understand where you're coming from too....I change bosses often at my one job, and it is difficult, explaining my limitations each time, even though it is in my file. And a whopper of a file it is, too. And now that I am out actively job hunting, and interviewing, it is difficult for me to decide how much to tell potential employers......especially at my young *ahem, ahem, coughing hard* age.

I have accepted my E completely......I have no problem with that part. It is the knowing whether or not I'm going to get cooperation from each boss (or potential one) that I have problems with...

[epileric]

Thanks Meetz. Yesterday was a bad day. Today's pretty good so far.

Also a stone is 14 pounds.

[Loopy Lou]

I only just read your above message epileric. I got as far as RobinN's and then was like "Ooh, quote, reply!" (Easily distracted)

It's crap that you had a bad day yesterday, but i'm glad you're feeling better.

[epileric]

I only just read your above message epileric. I got as far as RobinN's and then was like "Ooh, quote, reply!" (Easily distracted)

No problem, I (& I"m sure a lot of people here) am just as easily distracted. Nice to know I'm in good company.

It's crap that you had a bad day yesterday, but i'm glad you're feeling better.

It is crap to have days like that but it still felt good to tell someone. Thanks for your support.