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At What Point Do You Start Considering Disability?


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#1 818sis

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Posted 14 December 2013 - 08:39 PM

Hello,

 

I have been away from the forum for a while.  I'm sure many can sympathize with being tired and busy and all.

 

I was just wondering at what point does someone with narcolepsy (without cataplexy) begin to consider disability, or is that only something you consider if you have cataplexy?

 

I am the type to persevere a little too much when I really should give myself a break.  I sometimes need to admit to myself that I am not like everyone else, so if I can't live up to the standards they have, that is ok.  I went all through grad school before I was diagnosed, and in grad school, I never got a grade below an A-.  As far as I'm concerned, that is nothing short of a miracle, considering that I fall asleep after reading 3 pages every time.  And my major was Theology.

 

I am currently a full-time teacher, but that drains me so much that even on Nuvigil, all I do is work and sleep.  Sometimes I don't even bother to eat, because I'm too busy sleeping.

 

Anyway, I am not trying to get something for nothing, but I realized that maybe I should give this a good hard look before dismissing disability forever.  There is a definite chance that I do not deserve it, but I want to be fair to myself just in case it is really something I should be looking into.

 

So, at what point in your life with N do you consider the possibility that it may not really be reasonable to do this on your own?

 

Any advice is appreciated!  I am so grateful that NN exists.  Sometimes it is difficult to get people in my life to understand what life is like for me.



#2 IdiopathicHypersomniac

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Posted 17 December 2013 - 10:54 PM

I'd say the time to pursue disability is when all medications have failed, or you develop serious side effects from them and must stop.  You could pursue short term disability through your employer while your doctor tries out different treatments.  If you've only tried Nuvigil, you've still gots lots of unexplored avenues -- Adderall, Vyvanse, Concerta, Ritalin, Xyrem, plus other sleep meds (Lunesta, Ambien).  Good luck!



#3 Jennell

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Posted 23 December 2013 - 03:54 PM

Hello,

 

I have been away from the forum for a while.  I'm sure many can sympathize with being tired and busy and all.

 

I was just wondering at what point does someone with narcolepsy (without cataplexy) begin to consider disability, or is that only something you consider if you have cataplexy?

 

I am the type to persevere a little too much when I really should give myself a break.  I sometimes need to admit to myself that I am not like everyone else, so if I can't live up to the standards they have, that is ok.  I went all through grad school before I was diagnosed, and in grad school, I never got a grade below an A-.  As far as I'm concerned, that is nothing short of a miracle, considering that I fall asleep after reading 3 pages every time.  And my major was Theology.

 

I am currently a full-time teacher, but that drains me so much that even on Nuvigil, all I do is work and sleep.  Sometimes I don't even bother to eat, because I'm too busy sleeping.

 

Anyway, I am not trying to get something for nothing, but I realized that maybe I should give this a good hard look before dismissing disability forever.  There is a definite chance that I do not deserve it, but I want to be fair to myself just in case it is really something I should be looking into.

 

So, at what point in your life with N do you consider the possibility that it may not really be reasonable to do this on your own?

 

Any advice is appreciated!  I am so grateful that NN exists.  Sometimes it is difficult to get people in my life to understand what life is like for me.

 

 

Oh gosh do I feel this post! And honestly I keep circling back to this question myself. :( But I'm nervous, very nervous about the lengthy process, the denial and resubmission - and how do I survive in the meantime? And then if all is approved and set up it's about 1/2 what I have now from what I understand and goodness I'm always behind it seems NOW - how can I live on 1/2 of that? :(

 

I understand the not eating to sleep, though with Xyrem it's maybe more that it kills the appetite AND I'm too tired to bother. So far today I've had part of a 1 3/8 oz bag of peanuts. Hmmm.

 

I'm also sure happy for NN - beyond aggravated with people who say, Oh I'm tired TOO!!! I really don't want to be that "My thing is worse than your thing" person but when it comes to tired - sorry, folks if you're not a narcoleptic and you're working a job etc I just am really confident that I am more tired than you!!

 

And I actually had someone say to me yesterday (someone I dearly loved and trusted) how they could understand that my father would feel disappointment in me not living up to my potential..............WHA THE EFF???? No you did NOT just say that to me!! A - my dad hasn't even said that - you're reading into a situation and to say you can see cause for disappointment - ?? who the heck do ya think you are!

 

Wow, just rough when someone you've let into your inner circle turns on ya...a lot of days lately I can't get to work. Just can't get dressed and drive in. And then friends say ya me too. What? You um are currently at work right? So you did not feel so tired you didn't go in or are you saying you were as tired but you were stronger than me and therefore able to go in despite fatigue?

 

So I just start to say, oh (very genuine) how many stimulants do you take a day? They get this look and say Um what? No, I don't take any stimulants. Oh really? Cuz I take six a day and still too tired to go to work.

 

Ok - sorry for the rant!! Whoops a daisy just sorta slipped out!!!! Yes being overly tired does bring out some of the beeyochiness in me :( BUT hoping some changes with things will help!!

 

Best to all of us!



#4 louie

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Posted 03 January 2014 - 02:35 AM

I am a full time teacher too. I have been asking for accs for years, and am usually successful. I plan to work with accommodations until I no longer can, like if my empliyer refuses to grant them and I risk being fired.