I have now been home from work for close to two weeks and have been freaking out because my ability to take care of myself has been dicey.
Yuck! One of the things that works best for me when things are bad is to remind myself that much of this is out of my control. I know that stress tends to exacerbate my narcolepsy. I also know that "pushing harder" tends to make the rest of my body succumb to other diseases.
The sleep doc wrote me a very vague note for work just stating that I should be home until the end of the year.
Why are there not case managers at sleep clinics or etc. to help with the details of this?
One of the most frustrating things I have found is that most "sleep clinics" are not set up for us. We are not the "nightmare" that insomniacs present, but we are close. Many "sleep doctors" have little to no idea of how to "treat" us. They have some guidelines and some experience, but most are in the business of sleep to treat apnea. As a result, getting "help" is a major pain. And, because narcolepsy and our meds can impact each of us so differently, the best we can often hope for is vague notes. Doctors don't like to make definitive statements about PWNs because being wrong might lead to lawsuits. Your best bet is to know what you want from your doctor before entering into the clinic and refusing to leave until you are satisfied. Also, this forum and other PWNs have been invaluable to me. There are many good doctors out there, who do want to help us. I also think that many of the ones that frustrate us are genuinely trying to help; they just don't know enough about narcolepsy to do much good.
I really like my job and get energy from people
I am quite similar in that regard. In fact, many people struggle to believe how sleepy I truly am because I am such an extreme extrovert. Is there anyway you can get into the office with someone else? Would that allow you to function?
I feel like being at home will drive me stir crazy
I need to keep my medical insurance and get paid
One day I feel sort of okay but today for example I can barely keep my eyes open, head up, walk around my apartment and this post has take a every long time
After thinking I had a handle on "whatever" was happening to me in the summer of 2004, things got so bad by December, I felt the need to take off the last trimester of the school year. The first month was awful because I did NOTHING, and it drove me nuts. Eventually, I found a routine that helped me get my mental health back under control. It still took two more years of searching until I got my definitive diagnosis of narcolepsy. The realities of money and health insurance are huge. Given what you have said, I would argue that you should see if there is anyway you can catch a ride with a co-worker or use public transportation. On the days when you are totally shot, stay home, but I know that on even some of my worst days, being at school allowed me to function enough to do my job. The last few weeks have actually been like that for me. I have barely been able to get out of bed, but forcing myself to go to work and doing what I could (and being okay with whatever I do or don't do) has allowed me to only miss one day so far due to health.
The Dr. doesn't even have an estimate of when the symptoms may calm down so I can work, drive and etc.
Again, I think that is a common theme for many of us. Because they have no clue, they don't even try to guess. Trust yourself and keep remembering that it is not YOU. Narcolepsy is its own entity. Accepting it and acknowledging it are vital to being able to function. We are people with a disability. That does not mean we are useless, but it does mean that certain things will take us more time and others will be far more difficult.
I spoke with the direct supervisor over the phone for an hour, 2 days ago about the vague Dr.'s note but we left things up in the air. I think I was in denial at the time of our conversation thinking that I would be able to make it in the office this week and or do a ton of work from home. The truth is I have no idea what the hell is going on with the brain, weird things are happening daily, symptoms have intensified and are much more frequent than ever before.
I know that I regularly battle denial. Often, I think, "I can get that done tonight." Only, I can't. In fact, it was ridiculous to pretend that I could. After 6 years of having no idea what was wrong with me, and another year and 4 months of knowing it is narcolepsy, I think I am finally beginning to learn that I am limited. More importantly, I am starting to be at peace with what I can do and what I can't do. This disease has changed my life, but I don't have to let it ruin my life. Instead, I am working to appreciate what I can and prioritize the things that are most important to me. As a result, I am much happier than I have been in years, even though I have a chronic condition that might still get worse.
How muc detail to I share with work about the N? I know by law they can't ask.
If you like your job and trust your employer, I would tell. Hopefully, you can make arrangements so that you can continue to work productively, but also handle the quirks of narcolepsy. Many places even allow you to "nap" periodically. I would also suggest that you read over the ADA (Americans with Disabilities Act) information on the NN website. I believe that your work place is required to accomodate you. You are still bright and hard working, you just have some sleepiness that will get in the way from time to time.
How to you attempt to keep your job, reduce drama,
The biggest thing for me is working part-time. I am lucky to be in a supportive environment. I do not nap during the day, but I am also such an extreme extrovert that I can function decently at school even on my worst days. I also see a therapist once a month, participate in a men's group every other week, write a blog about living with narcolepsy, and spend lots of time learning and sharing on this forum and a few others. Finally, my major hurdle is acknowledging that I am finite. This condition makes it extremely difficult for me to do anything to the standards that I have in my head. I continue to re-learn how to accept what I can do and not beat myself up for being a disappointment. Beyond all of that, I also use chiropractic, massage, and acupuncture to improve my quality of life. I have done yoga before and continue to work to get myself back into some kind of routine with that and exercise.
- Due to start Xyrem this week
- Re-establising a routine
- Dr. increased Provigil to 600
Those plans sound awesome. I hope the Xyrem works well for you. I have been on it since my diagnosis. While it is not a miracle cure for me, it definitely makes a huge difference. I am also a huge fan of routine, especially when it comes to sleeping and waking. Finally, good luck on the Provigil change. I took 400 for three months, but it was a terrible drug for me. Whereas I could take 80 mg of methylphenidate and barely feel anything, 400 mg (and then 100 mg) of Provigil gave me overwhelming anxiety and uncontrolled weightloss. I now take amphetamine, which works decently for me (30 mg when I wake up, 30 mg more at Noon).
Good luck! I do hope you can find a good groove.
