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In Danger Of Losing My Job


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#1 DevonKay

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Posted 26 November 2012 - 06:07 PM

I really need some advice. I feel like I'm in danger of losing my job over something I can't control, and I don't know what to do.

I was recently diagnosed with narcolepsy, and it's affecting every aspect of my life. I'm doing my best to adjust, but it's really difficult when work has become a nightmare. Though I'm not having the issue of falling asleep at work, I do battle EDS and things like memory lapses, confusion, and an inability to focus or concentrate. There are times I have to ask clients to repeat themselves several times before I understand them, I forget things immediately after people say them, I find that I've done things I have no memory of doing, and sometimes I just feel stupid. It's just general confusion. My boss has seen some instances of this and has insisted that I just don't know how to do my job. I explained my situation and diagnosis, but she seems to think I'm making it up or that these symptoms somehow don't relate. "It can't be narcolepsy because you aren't falling asleep." This was frustrating enough. But then there were times she'd make me write down things and repeat them to her or she'd stand behind me and watch me work. But still I just dealt with it.

But now she's making me drive an hour from home for additional training in another office because she insists I don't know what I'm doing. I swear I understand my job responsibilities and how to complete them. I'm just struggling, and I honestly believe it's narcolepsy.

I never used to feel this stupid. I never used to struggle to understand things or forget things right after doing them. I used to be able to read without forgetting what I'd read just a few moments before. I used to be able to listen to people talk and not get confused because I forgot what they were talking about. Is this all in my head? Help.

#2 Hank

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Posted 26 November 2012 - 07:52 PM

I really need some advice. I feel like I'm in danger of losing my job over something I can't control, and I don't know what to do.

I was recently diagnosed with narcolepsy, and it's affecting every aspect of my life. I'm doing my best to adjust, but it's really difficult when work has become a nightmare. Though I'm not having the issue of falling asleep at work, I do battle EDS and things like memory lapses, confusion, and an inability to focus or concentrate. There are times I have to ask clients to repeat themselves several times before I understand them, I forget things immediately after people say them, I find that I've done things I have no memory of doing, and sometimes I just feel stupid. It's just general confusion. My boss has seen some instances of this and has insisted that I just don't know how to do my job. I explained my situation and diagnosis, but she seems to think I'm making it up or that these symptoms somehow don't relate. "It can't be narcolepsy because you aren't falling asleep." This was frustrating enough. But then there were times she'd make me write down things and repeat them to her or she'd stand behind me and watch me work. But still I just dealt with it.

But now she's making me drive an hour from home for additional training in another office because she insists I don't know what I'm doing. I swear I understand my job responsibilities and how to complete them. I'm just struggling, and I honestly believe it's narcolepsy.

I never used to feel this stupid. I never used to struggle to understand things or forget things right after doing them. I used to be able to read without forgetting what I'd read just a few moments before. I used to be able to listen to people talk and not get confused because I forgot what they were talking about. Is this all in my head? Help.


Ok- I deal with and have dealt with the same things for the length of my career. Here are some suggestions:

- live according to your calendar. I use outlook reminders for everything and attach detailed notes for each event. When I schedule a meeting or make an appointment, I make sure the event and reminders are saved before I walk away. When a reminder pops up, I have already written instructions to myself for what I need to do and then I do it. This saves me from mistakes and forgetting details throughout the each day.

- don't wait for your boss to make you write something down and repeat it to you- be proavtive. When she is telling you something, ask her to wait while you grab a note pad. Then before you are done, say something like: this is what I have-x,y and z, are there any additional points you would like me to include. I always clarify with others, so I know I understand and have not missed something important. Because I tend to over-compensate with this, others feel really listened to and appreciate that I take the time to understand.

- when I do make errors, mistakes or forget something, I give a sincere apology. I always ask if my error caused them an inconvenience and offer a resolution that works for them. I take it seriously and take full responsibility, which is what most people want. Everyone makes mistakes, it is all about how you handle them. Whether or not we have Narcolepsy (and I do also) we are still responsible for getting our jobs done.

- when your boss sees that you are compensating for your deficits, she will back off. It is her job to make sure you are doing your job. Show her you take it seriously and she will probably lighten up.

- if you are being sent for additional training, thank her for the opportunity. Ask her for help with solutions to prevent problems - then fewer problems will happen.

- I have lived with this undiagnosed for a long time- this is how I have managed myself. I have to stay on top of my EDS/memory/concentration. If I am not on top of it, I sink underneath it.

- Consider a stronger stimulant. I have been on Adderall for the last 2 years and it has helped a lot. I will be trying Nuvigil - now that Xyrem is reducing my EDS, I will try a milder stimulant like Nuvigil. You may need something stronger.

- Don't expect anyone to understand what it is like to live with Narcolepsy- especially at work. Very few people will have either the interest or the capacity to understand.

- Ultimately, it is up to each of us to figure out a way to manage our lives with this. We will always have to try harder because we have Narcolepsy to overcome. Maybe that means finding a different job. Maybe it means new coping strategies to succeed in your current job. I would definitely recommend learning new coping strategies- you aready know how to do your job.

I don't want to seem unsupportive- I completely get it and have dealt with the same things. I am not minimizing the difficulty of what you are dealing with. It is hard and lonely and frustrating. But we have to find ways to work around Narcolepsy.


Now that you have a diagnosis and some medication to help, your heavy load from Narcolepsy should begin to lighten. You have been living with it even when you didn't know what it was.

give yourself some room to deal with the emotions of having this diagnosis. I had a harder time after the diagnosis than before, actually. It was such a scare that I had been doing things for years that people with narcolepsy "can't do"- if I have already done them, then I certainly can continue doing them. Dust yourself off and push on- you will need to get good at pushing yourself. And balance that pushing with a lot of self- care. It is a daily battle and we all have to find a balance for ourselves that we can live with.

#3 DeathRabbit

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Posted 27 November 2012 - 10:39 AM

I really need some advice. I feel like I'm in danger of losing my job over something I can't control, and I don't know what to do.

I was recently diagnosed with narcolepsy, and it's affecting every aspect of my life. I'm doing my best to adjust, but it's really difficult when work has become a nightmare. Though I'm not having the issue of falling asleep at work, I do battle EDS and things like memory lapses, confusion, and an inability to focus or concentrate. There are times I have to ask clients to repeat themselves several times before I understand them, I forget things immediately after people say them, I find that I've done things I have no memory of doing, and sometimes I just feel stupid. It's just general confusion. My boss has seen some instances of this and has insisted that I just don't know how to do my job. I explained my situation and diagnosis, but she seems to think I'm making it up or that these symptoms somehow don't relate. "It can't be narcolepsy because you aren't falling asleep." This was frustrating enough. But then there were times she'd make me write down things and repeat them to her or she'd stand behind me and watch me work. But still I just dealt with it.

But now she's making me drive an hour from home for additional training in another office because she insists I don't know what I'm doing. I swear I understand my job responsibilities and how to complete them. I'm just struggling, and I honestly believe it's narcolepsy.

I never used to feel this stupid. I never used to struggle to understand things or forget things right after doing them. I used to be able to read without forgetting what I'd read just a few moments before. I used to be able to listen to people talk and not get confused because I forgot what they were talking about. Is this all in my head? Help.

You need to stress the fact that it's an organic condition. And if she starts being a douche and threatening termination, you need to remind everyone it's covered by the ADA. Seeing as you're in the South with me, they could prolly fire you and get away with it, but stuff like that still gives people pause. And yes, I've had every symptom you describe. There are entire months of my life I just don't remember.

#4 Guest_tabster1_*

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Posted 27 November 2012 - 06:17 PM

I have memory problems too (I have narcolepsy & had a severe TBI). What I would do is write EVERYTHING down. Is it feasible to take notes while you are with a client? I don't know if you have a desk job or what, but if you had a notebook that you always kept on your desk with notes, then you could write it down, then when you see it, you would be like "oh yeah". So you wouldn't forget to do whatever it is. Or if it's more of a you can't remember what they said then you could refer back to your notes.

I also make instructions for myself on how to do things. I'm still in school (vet tech) but I think you could do the same thing. I make a numbered list telling me exactly how to do something so I don't skip any steps. A lot of people do this with brain injury. For example, making a pot of coffee. The Instructions will be right next to the coffee pot with the exact location of everything written down so you can find it all, and every tiny little step. I'm making binders for when I graduate, with instructions on making blood smears, setting up the microscope, etc.

But all that advice is for remembering to do things. I have no tips on when you blank out and do stuff and can't remember doing them later, except maybe different medicine or scheduled naps. You're boss should allow you to take notes/lists/naps whatever because if that's what you need then they have to give it to you.

#5 DevonKay

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Posted 27 November 2012 - 07:08 PM

I do keep lists and instructions to help me out. And I do try to take notes when dealing with people. These things help, but it's some of the things my boss wants me to stop doing. She insists that additional training will mean I won't have to do them. I was really open with her about my concerns about the training and the distance (especially since my doctor doesn't want me driving), but instead of discussing it with me she went to HR. It's been so frustrating, especially since some of the specific incidents are from before my diagnosis. I've noticed some improvement on the medication, though I think the dosage is off. And I have some really good days. The incidents she cites include staring blankly at documents handed to me, not knowing immediately how to respond to requests, or needing to ask clients to repeat themselves several times.

I did mention the ADA when talking to HR, and the woman I spoke to wanted some sort of documentation of my diagnosis. I called my neurologist, who wrote and faxed me a letter stating the following:

"Devon is being seen by our office for a diagnosis of Narcolepsy. This diagnosis includes sleep attacks which vary in time and intensity. These attacks may be manifested in several ways to include confusion, lethargy, and falling asleep."

I'm not sure what to make of this, and only goes on to direct questions to her office. So this is it. I told my neurologist that my issues with EDS, memory, and confusion were affecting my work, but she wrote this about sleep attacks. I'm not sure how useful this will be. I'm starting to really hate life.

#6 Guest_tabster1_*

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Posted 27 November 2012 - 11:43 PM

I tried to attach this fact sheet my doctor sent my school but it said the file was too big to upload. It had a whole page about memory loss/confusion.

I don't think they can just not let you take notes if that counts as an accommodation and it helps you. I don't understand why they wouldn't let you do that anyway. Do they think it's not professional or something?

At least your neurologist sent something, maybe now your boss will believe that you actually have it? They really can't fire you over this. I think you need a mediator or something. LIke someone who can be there when you explain what you need and what your problems are. Cus it kind of sounds like your boss isn't paying attention to anything you say, maybe you need someone who can explain it in a different way. I don't know if I'm making any sense....

#7 exanimo

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Posted 20 April 2013 - 02:44 AM

I realize this is an older post but I found some information that may be helpful.

According to this site: http://askjan.org/media/sleep.html

Reasonable accommodations for memory may include:
Post instructions with frequently used equipment
Allow the employee to tape record verbal instruction or meetings
Provide written checklists
Allow additional training time
Provide written as well as verbal instructions
Use notebooks, calendars, or sticky notes to record information for easy retrieval

#8 steaks

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Posted 19 October 2013 - 04:06 PM

DevonKay,

 

Narcolepsy isn't the real problem, it is that most jobs require a "One size fits all", 9-6 schedule, despite the fact that probably half the population doesn't function well at those hours, or in those increments.  Managers don't allow naps because it has been pounded into their heads since birth that "Napping=lazyness", so they don't allow it, even though it can skyrocket productivity for both narcoleptics, and non-narcoleptics.

 

Considering the current reality, for many of us, the best long term solution is to find a job/business that has a very flexible schedule.  This is a real challenge for many of us, but it is worth it.

 

Regarding your boss, I can't believe that your boss has a problem with your taking notes.  Look for a new job right away, life is too short to work for such people--working for her would drive me nuts!



#9 louie

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Posted 22 October 2013 - 11:52 PM

Keep a written r3cord of all conversations. Ask for accommodations because of uour disability. If something gets said verbally, email your boss or hr and repeat what was siad so that there is a written record. If yiu get fired you will have records to show you tried and they failed to accommodate. You might get your job back