Crafts · disability · Personal · website


Once again, I am blogging after what may seem like a long period of absence. I’m here, it’s just that I’ve been having more and more problems trying to complete basic tasks.

Despite my prescription drug that treats narcolepsy, I find myself losing hours at a time while sitting at my keyboard. I wake up, care for my pets, sit down, and then wake up again. I’m so tired all the time and this fatigue weighs on me, ruining my life. In the past month, I’ve had appointments with several different doctors. My primary care doctor believes it unlikely that I have lupus, but wants to look into fibromyalgia. The sleep specialist said my CPAP machine is controlling my apnea well, so that’s not a contributing factor. My neurologist tested me to make sure my medication levels were where they should be, but, as is typical, never contacted me afterward¬†about the results.

I now have nonstop numbness in my left fingertips. I’m worried this will affect my ability to create, but I’ve been so tired that I haven’t really experimented with that. This might be caused by a pinched nerve in my neck, and I’ll find out more about that on Tuesday. I already know I have pinched nerves in the lumbar region of my spine, so this won’t really be a surprise, I just worry about what the treatment plan might be. The physical therapist I have been referred to refuses to acknowledge my referral and hasn’t contacted me at all, so I’m hoping I can go to a different one. I’m terrified that physical therapy isn’t going to be enough at this point.

I really can’t wait to get started on my Project Semicolon¬†macrame bracelets, it’s just so difficult. I finally have all the materials I need, but I need to practice some patterns before I’m ready to work with the good cord. I want and need to do so many things, it’s just damn near impossible to stay awake, let alone achieve anything. I want to give myself deadlines, I want to photograph my progress, I want to do it all, and yet I am stuck doing nothing. I want to work on my website, set up my listings, improve my Etsy, work on my titles to rank up, and so many other things. I want to learn new techniques (I think I’ll love weaving!) but I’m not even managing to practice the ones I know.

I’ve told my psychiatrist this in the past, but I think it bears repeating: I don’t even know what it’s like to be happy or even just “normal” anymore. I just keep getting worse and worse, and it seems like there’s nothing anyone can [or is willing to] do to help me.

All of this is to say that I’m not trying to get anyone to feel sorry for me, I just feel like I need to explain myself. I feel like I’m letting people down. I’m letting myself down. I’m sick of feeling like this and I’m trying to stay positive, but that seems like a monumental task these days, and it was never easy to begin with.

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