Employment and Narcolepsy

By MissKiKi Latest Activity December 5, 2011 at 8:34 pm Views 2,117 Replies 9 Likes 2

MissKiKi

This is a new diagnosis for me, though I know I have had problems for decades, if not since birth.

I work full time as a designer, 9-6, m-f. I take Nuvigil, but nothing for the sleep cycle regulation. I have been trying to find the right doctor.

About once a week I have to come in late (10-11am) because I struggle to wake. When the alarm goes off my brain is awake but my eyes wont open and my body is weak.

My employer has done it's best to accommodate me, but the current situation is not working for either of us. I hold a very important position where many people including our clients rely on me. Missing are just 1 hour, is problematic.

They told me they don't want to lose me and would like me to figure out a different way for them to accommodate my illness.

I could doing any of the following:

1.) Take a different position utilizing my expertise
2.) Work part time thereby losing my superb health insurance
3.) Go on short-term disability for 3 months and then return to work when better
4.) Go on short-term disability and still work part time
5.) Go on long-term disability and not work
6.) Go on long-term disability and still work part-time
7.) Take a voluntary lay-off
8.) or something else

Please tell me how you keep a full time job with Narcolepsy or tell me if you think I shouldn't be working.

Thanks,
Kristine

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Replies (9 replies)

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  • jamiejean88
    jamiejean88 March 29, 2012 at 9:16 pm   

    Set your alarm an hour before you have to wake take your Ned's go back to bed then when the hour comes its a little easier. I set my alarm an hour before I have to get up and take my Adderrall and when the hour comes its much easier to get up . The Adderrall doesn't carry me for long though in the day so like you while I am at work I feel myself crashing before lunch and feeling so tired. I to need to find a good doc I just moved to fl in aug and have a doc that gives me my Adderrall but I'd like to discuss other things I can't live like this forever all I do when I'm not working is sleep. What value of life is that , I have take mess to basically get me to work then by the end of the day I'm so tired driving home is a chore so it's work and sleep no energy for more. It's rough on relationships with friends family and boyfriend they just can't fully understand

  • MissKiKi
    MissKiKi December 24, 2011 at 10:05 pm   

    Well I lost my job a week ago. They sighted my attendance. Crazy, I tell ya! They seemed to be ok with it all. Goes to show you how merciless employers are.

    Thankfully I can get unemployment. And unfortunately I never got an official letter from my doctor about missing work, so I have no legal leg to stand on.

    My sister and I have always wanted to open a bakery and we will now be working on that. I hope that I can manage a bakery and still manage my illness.

    Without insurance I cannot afford the Nuvigil and I don't know how to get it, so I just stopped taking it. I have been sleeping until 11am most days, though yesterday and today I woke at 8am.

    I don't know what to do without insurance.

  • FondaADD
    FondaADD December 25, 2011 at 7:46 am   

    Have you tried applying for Medicaid? Your local social service department should help you since you are unemployed. Also some pharmaceutical companies give people with no insurance assistance for low income and those with no insurance. Try this website for Partnership for Prescription Assistance http://www.pparx.org/en or call 1-888-4PPA-NOW (1-888-477-2669).

  • FondaADD
    FondaADD December 24, 2011 at 5:34 pm   

    I went through a similar issue as a special education teacher with ADD and idiopathic hypersomnia, which is narcolepsy with no explanation. I worked part-time for a few years so I could have benefits but it just wasn't working. I refused to ask for accommodations and let the school know because of fear of them judging me and my personal business getting out there. Even though we have laws in place for people with disabilities, some will never give us a chance if they know what we have up front. It is hard for us to prove discrimination in most cases so I just didn't let them know. I hired an ADD Coach to help me organize, prioritize and stop the procrastination. I took a few classes and started my own coaching business.
    I have the morning time to sleep in and get dinner cooked then I start working with clients. I have time to sneak in a nap during the day. I delegate certain chores for my husband and son. I cook 4 days a week and my teenage son and husband cooks 1 day. This works for me and my family.

    You will have to see what will work for you. If you remain full-time, try a coach to help you set up a schedule and meet your goals.Narcolepsy is something you will always have to make adjustments for in life. I agree with the latter statement,you take control of it, don't let it control you.

  • Fuffybunny5000
    Fuffybunny5000 December 12, 2011 at 1:12 am   

    Hi, I was diagnosed in August of this year and I am also having trouble accomodating myself much less having my work do it. I take nuvigil which helps with the day time issues but As you, My alarm will go off for HOURS and its like im stuck, cant move, i can hear it.. oh god i can hear it.. and idk if my brain is trying to make sense of why i am hearing this most heinous of noises or what but i will be fighting the alarm monster, blowing up buildings that the noise is coming from, smashing fire alarms, it changes from time to time. Usually happens most when I am stressed or not getting enough sleep.

    Just ask your employer to cut you some slack on the late thing.. maybe start earlier.. what time are you going to bed or waking up? If you know if you have a sleep paraylisis attack it can last for quite a few hours so maybe instead of setting the alarm for 8am, set it for 6am…

    I was 2.3 hours late for work yesterday… im in the middle of anasty break up because of my narcolepsy… which is really stressing me out.. but so im not sleeping right, or eating right or doing anything right.. so i had an attack.. last one wasnt since july. try to limit yourself to 7 hours of sleep… have someone call you at the same time every day (make that the i got to get up NOW time so you wont find excuses not to get up) have 2 or 3 people commit to this very important task. (sometimes phone will wake u if alarm wont) But multiple alarms, you just have to manage yourself… REM is a beast.. and when you add SP to it.. you cant do anything about it. Your stuck. So you got to work around it. Dont let narcolepsy work you.. you work it!

  • MissKiKi
    MissKiKi December 15, 2011 at 2:53 pm   

    Thanks Bunny! I will work it! Going to try your suggestion to set the alarm for earlier. I wake at 6am and on SP days I don't fully wake until 8 or 9am. I guess I could set my alarm for 3 or 4am to initiate the process of waking.

  • Tracy
    Tracy December 7, 2011 at 4:18 pm   

    in my opinion - disability is a last resort, not to mention it can take a very long time to get - they usually deny at first request then you have to fight.

    my suggestion is to have a discussion with your sleep doctor about trying different medications. if what you are doing is not working, change what you are doing.

    ask your SLEEP DOCTOR about Xyrem - many narcoleptics have had great success with it and work full time jobs…

    tracy

  • yellow school bus
    yellow school bus December 29, 2012 at 9:46 pm   

    I already got onto disability because I have good insurance, not govt ins. I am wondering if I can realistically get the IH under control, perhaps it is narcolepsy, the test is done in 2 weeks. Pretty much I have to be unable to do 70% of my job to stay on disability. I find my weeks get out of hand if I schedule more than 2 appointments a day and I put my son in after school care because I need the afternoon break. I really scared of xyrem but my night time sleep is not good especially if I have to do something the next day in the morning, by morning I mean beofore 11 am!

  • Tracy
    Tracy December 30, 2012 at 12:24 pm   

    what are your fears about xyrem? You are not using it now are you?

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