well, im sitting here pouting. thinking about how my life is sucked away by narcolepsy. thinking about how badly I wished there was a support group in driving distance so I could actually meet someone else who understands how hard it is to get through a day. the isolation is becoming overwhelming. this is so hard, this is not fair, I just have the life drained out of me. and tomorrow, I will get up and do it again. another unproductive day im sure. another day I will disappoint someone somewhere if not just myself. I do all the right things, meds, naps, stopped trying to over do it with the things I used to be able to do. this just quite frankly, sucks. fight sleep all day, then cant sleep at night, how ironic is that . so annoyed by remarks like if you just slept more you wouldn't be so tired. urghhh. I want to shout, yell it doesn't t matter how much I sleep, it makes no difference what I do, nothing makes a difference. nothing....
You might be interested in what my day was like yesterday.
Two or three simple tasks — that’s all I had to do today. Go to the art store, buy a gift, shop for dinner for tomorrow. That’s all I had to do. It doesn’t sound like too much for one person to accomplish in an hour and a half. Does it? I couldn’t do it because as I pulled into a parking spot, I hit the car next to me. Just a bump — no damage. I was on the phone but that really wasn’t the issue. The issue is that I can’t trust my judgement anymore. I usually don't talk on the phone when I'm driving. Why did I decide it was okay today? I didn’t sleep well the night before despite taking Ambien and clonazepan. I woke up early, tried to get an early start. I thought I could do it. I thought I had enough time and was in control of all my faculties. But, I was wrong. I shouldn’t have been on the phone, I shouldn’t have been driving. I shouldn’t have tried to squeeze into that spot. To top things off, I went to the store a day before the coupons I collected were effective. I don’t even know why I was trying to park in that spot, when I wanted to go to a different store on the other side of the parking lot. I was distracted, not by the conversation on the phone, rather by the thoughts racing through my head. Now, I’m afraid again. Now, I’m disappointed in myself again. Now, I’m angry that the whole day was wasted because I couldn’t do anything but rush home after the incident. The lady in the other car was very nice about the whole thing and she had no damage. I’m disgusted with myself for my lack of judgement. I feel like a stupid, foolish girl.
I think tasks are multiplied by 100 for us......
The next day, I woke up with a different attitude of acceptance. I finally went to the store and bought the groceries I needed, then I cooked dinner. What a difference a day makes.
I cannot agree with this more if I tried! I was just having this "pitty party" on Sunday when speaking to my husband. I said exactly the same things. I have been suffering since the age of at least 15. Just diagnosed at age 40 a year ago. Now faced with this - there is no better - reality I feel the same. I also feel the more I age, the worse it gets. I am sure the aging process obviously plays a part (hormones, etc) - BUT with narcolepsy everything is obviously worse because we are just compounding symptoms on top of other issues. I too feel I wish someone really understood! We can chat anytime you like. I will inbox you with my email & we can chat daily if you would like even. I really need the support also. The worse thing to hear is - what you should do. Well yeah, if it were only that easy...
Melissa -- you are so right. My narcolepsy worsened after I went through menopause. I just had the 1st of many naps I will need today and it's only 11:30 AM. I haven't slept for more than 4-5 hours at night in years. I use a CPAP and use Ambien or Lunesta, plus clonazepan (generic clonipin). Some days, I just wake up and say "whatever!" Never know how the day is going to progress or how I'm going to feel.