Posted 31 March 2013 - 09:30 PM
I have been coping with my N issues since junior year of high school. Although back then I just had difficulty waking up in the morning. It wasnt until I showered that I felt less then zombie-ish. I felt mostly normal. I got excited about things and had energy although I was also known to have ADD and could get dazed and distracted easily.
This all changed About three to four years ago. I came down with a nasty flu. (im 31 now fyi) the doctor thought it was H1N1. It took me awhile to get better and I was horribly tired an exhausted while sick. The problem was that when I got better the constant tiredness was still there.
I never felt rested enough. I dozed off at innappropriate times and I fell into depression.
After many scary doctor tests looking for the worst to explain my sudden fatigue and these strange hallucinations while I was going to bed at night I was eventually sent.to a sleep clinic where they discovered I have N.
since this started ive lost many friends, my relationship has suffered and I just lost my job. I feel part of why I lost it is because im not very exciteable and chatty with customers. I wish I could be but I struggle and I sound obviously fake. So instead im low pitch, polite and mellow. Apparently they wanted more energy and more performance.
So now that im done with the history on to the main event. I have always been a little socially awkward in person. I was never the center of attention. But since this constant fatigue hit me a few years ago I began to notice that any form of social gathering makes me nervous. I dread setting appoimtments, I can communicate fine one on one with friends and family. But anything more and I feel anxiety. Im nervous in about people of authority. This has hindered me in my attempts at trying to collect unemployment...and it causes me to put off important responsibilities. I keep pushing through these feelings. Its irrational and I do what a grown man at 31 is supposed to do but these feelings are still there all the time. I notice that whether I get truly paralyzed by them or overcome them on a given day is decided ultimately by how awake and coherent I am for the day. If im sleepy and my thoughts are jumbled. It feels like a struggle to pull it together. I have a high IQ and yet I.can forget simple things. Before I was fired at work I guess it became obvious that id rather do laborous tasks then talk to people. I felt broken when a customer caught me on a bad day and.asked me a simple question only to look at me funny while I stutter or forget what I was trying to say in mid sentence.
Does anyone else know what im talking about? Or is this just another issue that has nothing to do with N?
Posted 08 April 2013 - 07:12 PM
To a degree. I have always had some social issues to begin with though. Being an introverted individual is hard when you live in a world where extroversion is considered to be normal and desirable. Since my diagnosis I have found it increasingly harder to find the right words for what I am trying to express. It's not that I am lacking in vocabulary, like you, I am naturally smarter than most. It's just hard to talk to people. Before my diagnosis I was actually doing pretty well. I was making friends and my speech was clear and flowed well. But since then, everything just comes out awkward, choppy, and odd sounding. I think I have lost a bit of my aptitude in catching other people's verbal social cues which makes it harder to chime in when I have something to say. It's almost comforting to just do my work or become lost in my own thoughts.
Large social gatherings, like you mentioned, don't give me any anxiety per say. Rather, I just feel like it is way too much stimuli for me and it is much easier to connect one on one rather than in the middle of a raging party where you have to scream to be heard.
So maybe I do understand what you are talking about, to a much more minor degree. Maybe it has nothing to do with Narcolepsy, or maybe it does. I really don't know. What I have been doing lately is just trying to relax and let things come naturally. My racing thoughts actually cloud my ability to speak well. I just have to remind myself that I am having a simple conversation with another human being, and not trying to decode a complex puzzle. It's hard losing friends and feeling like you're not good enough, but the truth is, you are. You just have to trust your subconscious.
Posted 05 June 2013 - 12:12 AM
Releived it's not just me. The answer to 'Outcast031's' previous question "Anyone else?" is... yes. I have similar experiences.
In summary, I used to be so outgoing but now depending on my tiredness, social gatherings can make me nervous, I don't like appointments either, groups can make me anxious and authority figures can make me feel strangely uneasy without any rational reason. Stimuli can be overwhelming and your mind can play tricks with your sense of space at times too at night as well as walking straight or bumpingi into doorways in the mornings. My cataplexy just makes me feel really weak and I have yawning and stretching attacks some days. I keep pushing through these feelings as well, and have done so for at least 20 years with increasing symptoms and intensity. It's often a long, long road to a diagnosis, isn' it?
As with anyone in a service industry job, it's often really hard. My sense of self has completely flipped. I have a Master of Education and so I have slowly shifted from teaching at a high school successfully for years, to struggling teaching, to even having my teaching contract discontinued once for seeking solitude to cope with tiredness and not being enthusiastic enough on a consistent basis with students, preferring administrative jobs instead. Employers are hard to keep on side sometimes, aren't they?
With good referrals from other teachers, I found another teaching job easily. For years, I kept punishing myself continuously believing that I stuggled more than others becuase, well... I wasn't trying hard enough, not enegetic enough or just not smart enough on some days. I found some strategies to help myself cope but after another 2 years of struggling so much I couldn't fool myself or others any longer and finished up at the end of my 5th year teaching over all disappointed in myself but still under positive working circumstances. I would always be just telling myself "I'm tired" or "I'm having a bad day" but I had to accept something wasn't quite right. How many times have we all said these things to ourselves in the past before being diagnosed?
Conversations are hard too. There are days when things just come out awkward for me too. I can't follow conversations with even 2 or 3 other people at a time. I hear the words fine, but I'll lose my concentration for a few seconds and fail to process the dialog, making it hard to 'chime in.' Faking it is a coping strategy.
I also get lost in my own thoughts, preferring to rest my eyes and daydream rather than interact with reality. I catch myself daydreaming on trains, buses, in waiting rooms, in the bathroom, watching TV and anywhere I don't have to pay attention to the world and can just rest. Sometimes the yawns, stretching and extreme tiredness are distressing. This seems to be a common theme everyone can relate to easily.
Over-sensitivity to stimuli is also a problem some days for me as well. Relieved to hear it's not just me. Occasionally, at night in the dark, my sense of space feels hyper-sensitive and I percieve being so tiny and everything else feels very large. This is a little distressing but is one of the symptoms a person with narcolepsy can have. Also bright sunlight or loud noises just seem so much closer, invasive and bothersome than usual when tired. Noisy traffic, crying babies, public announcements and noisy machines are so tough to deal with and distressing on bad days, aren't they?
My balance is worse on bad days too. The sleeping medication makes me unbalanced if I wake in the middle of the night. I quite often bump into doorways, tables and people accidentally at times too during the day if I'm really tired. I thought I was just clumsy but other people report having the same problems from time to time too. I just aplogize to people or if I bump into something I often carry on and rub my knee or shoulder and act as if nothing happened trying not to bring attention to it. Riding a bike is actually easier than walking!
We are all going to be at different stages of treatment and have slightly different experiences with narcolepsy but it's a relief to find common threads with others and share our experiences. Thanks for sharing and hope this helps others too.
Posted 12 June 2013 - 01:48 PM