My Other Invisible Illness…

My Other Invisible Illness…


I talk a lot about fibromyalgia but I also have narcolepsy. The picture of me sleeping is what the last 2 weeks have looked like. I cannot fill my marginally helpful stimulant until the day it runs out. Often the pharmacy is out, prompting them to have to order it and me to be out for a day up to a week. Well this time my prescription had run out, and although I had been trying to reach the Drs office for a few days to go ahead and call in a new prescription, it took quite some time to reach them.


Now, some of it was my fault for waiting too long but a lot is the office. But most of it was the Drs office fault. I don’t have a lot of choice as far as Sleep specialists and by and large really like this guy but his office is not efficiently run. They have multiple independent offices and it is hard to get in contact with them. Anyway, I have an appointment for tomorrow and still no prescription. Ugh. I have slept an average of 16-21 hours a day since Thurs before last.


I sleep for hours at a time and still wake feeling like I haven’t slept in a week. I want to stomp my feet and yell that it isn’t fair at the top of my lungs. I want to cry. I want to be angry. I hate feeling horrible. I hate missing out on life. I hate being so helpless. I hate what my life has become. I hate being so worthless. I hate being so useless. I hate being a burden. I hate that my kids take care of me now. I hate Narcolepsy. But….. that does no good. It is a waste of the little bit of energy that I have. It is a waste of the time I have to be awake. It is a waste….



One thought on “My Other Invisible Illness…

  1. “I want to stomp my feet and yell that it isn’t fair at the top of my lungs.” – I think you’re more than entitled to do this. Rant, rave and get it out whenever it builds up and you need to do it. You’re not useless and you’re not a burden; your family will not be thinking that way, they will just ache at knowing you’re struggling. I’m on the flip side with insomnia and getting less than 2 hours sleep at night and never feeling rested. I can only imagine the frustration with sleeping long hours and not feeling rested. I hope it goes well with the appointment tomorrow. Sending hugs your way ♥
    Caz xx

    Liked by 1 person

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