[Blindtlk] Having a Problem...

Jude DaShiell jdashiel at panix.com
Mon Feb 29 03:02:03 UTC 2016


How often have any of you heard  advertising for drugs to handle 
narcolepsy in the media, not to mention at the level this non-24 
condition got advertised?

On Sun, 28 Feb 2016, Mark Tardif via blindtlk wrote:

> Date: Sun, 28 Feb 2016 21:02:49
> From: Mark Tardif via blindtlk <blindtlk at nfbnet.org>
> To: Blind Talk Mailing List <blindtlk at nfbnet.org>
> Cc: Mark Tardif <markspark at roadrunner.com>
> Subject: Re: [Blindtlk] Having a Problem...
> 
> Kerri,
>
> It sounds like you are taking on a lot of unnecessary shame and guilt.  I 
> used to fall asleep at work, now that's something I felt embarrassed and 
> ashamed about.  But I found out at last that I had a medical issue, not the 
> non-24 necessarily, but another sleepp-related issue.  Browbeating yourself 
> with shame and self-loathing isn't going to help.  Trust me on this one, I've 
> done it too often and it only made things worse.  And by the way, I think 
> anyone who is the least bit reasonable, blind or sighted, would acknowledge 
> that some of us probably have this non-24 condition.  If so, it is a medical 
> issue, not a reason for shame.  Just because we don't like those commercials 
> doesn't mean that there isn't some truth for some people regarding this 
> illness.  I have said this before, but I think some times we are all ready to 
> assume that we have to get up and become adverserial because some potential 
> employer might assume that because we're blind, we must have this illness. 
> If you or anyone else has this or any other medical issue regarding sleep, 
> the thing to do is to help that person, not shame them.  My strong suggestion 
> is that you make an appointment with your doctor and express your concerns to 
> him/her, don't wallow in shame.  That does really bother me when we are so 
> ashamed of a possible medical condition we might have because the message we 
> are getting is that this means we are weaklings, or whatever other label you 
> want to use.  Frankly it infuriates me!  So again, treat yourself right, this 
> is not your fault, get the medical help you may need, if this is a medical 
> issue.  I hope this helps.
>
>
>
> Mark Tardif
> Nuclear arms will not hold you.
> -----Original Message----- From: Kerri Kosten via blindtlk
> Sent: Saturday, February 27, 2016 10:17 PM
> To: Blind Talk Mailing List ; Anjelina Cruz ; Ed McDonald
> Cc: Kerri Kosten
> Subject: [Blindtlk] Having a Problem...
>
> Hi Everyone:
> First, I am very very ashamed and embarrassed to admit this, so please
> no judgment for this message.
> I am really really struggling with wanting to sleep all day and
> staying awake all night. No matter what I try to do though, I can't
> seem to fight it.
> For example, on Wednesday, I woke up at 10 PM.
> I was wide awake the rest of the night. On Thursday morning at around
> 8 AM, I got up and went to my couch to watch TV.
> At 10, I sat on the floor and listened to one of my favorite radio shows.
> At noon, I again went to my couch and put on the radio.
> At around 2, I began to become exhausted.
> When I try to fight it and stay awake I become increasingly exhausted
> until I get a headache.
> Unable to take it, I usually end up laying back down and falling asleep.
> Here is the thing though. Even if I manage to stay up all day when it
> is time to go to sleep I am still wide wide awake all night and don't
> get tired until like 1 or 2 the next day so have to try to fight the
> whole thing all over again.
> I can't sleep at all at night, but if I try to stay up during the day
> when the world is awake my body fights me with everything it has.
> But when it's night I am wide awake.
> This is happening every day and is making me feel really ashamed and 
> depressed.
> I read the thread on Non 24-7. I am a member of the NFB.
> Like everyone else on this list, I hate those commercials on the
> radio. It makes me very very ashamed that I struggle to get through
> the day like those commercials say.
> I don't want to ruin any blind persons chances of employment because
> an employer hears those messages on the radio and believes them. I
> myself want to fit into the sighted world. My passion is sports, and
> so I've always wanted to do something with sports media. I want to
> show blind people can do things. I don't want to give off the message
> we can't even stay up during the day.
> I also feel ashamed because I can't really get a job or go to school
> or anything if I can't even stay up during the day. Sure I'm awake all
> night, but if I sleep all day I feel so depressed I slept through the
> day, I have no motivation to do anything.
> Even as I type this, I'm really upset. I fell asleep today at 1 PM. I
> am a huge sports fan and my favorite team had a game at 6 PM. I'll
> admit, I forgot to set an alarm for 6 PM to wake myself up. Anyway, I
> ended up waking up at 8:30 PM and missing the entire game. I found out
> my team won, but this is the first time I've ever missed an entire
> game.
> Today is also my Mother's birthday. When I was still awake this
> morning at around 11, I called her but she was out so didn't answer.
> She tried to call me back at 1:25 PM and I totally missed her call
> because I was asleep. I of course got to talk to her when I woke up
> but now I'll feel horrible the rest of the night because I have been
> asleep all day, and I missed the entire game.
> And I'll be wide awake all night and tomorrow I'll get exhausted at
> around 1 PM again.
> And yet, when I determinedly try to fight this, my body battles me
> with everything it has until I give in.
> This is out of control!!
> Does anyone else struggle with this?
> Is there anything that works or do I have to go to the doctors and
> admit these stupid ads Vanda has on the radio are true at least for
> me?
> The world is already so much about sight...I don't want sleep to be
> about sight too!!
> How do others deal with these sleep issues?
> If I go to the doctors and say I get my nights and days mixed up will
> they automatically assume I have this non 24 thing and immediately
> contact Vanda no matter how much I protest?
> Is there any way to lessen the exhaustion or something enough to stay
> up the entire day so I can force my body to sleep at night?
> I don't know what to do...
> Thanks,
> Kerri
>
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