Excuse me while I scream and cry

It took 2 weeks to get my results back from the sleep clinic, but I got them. I do not have narcolepsy and my average sleep latency (how long it took me to fall asleep) was 13+ min so I do not fall within the idiopathic hypersomnia diagnostic criteria. What does this mean?


Back to square one. No diagnosis, it is not a sleep disorder.


This post is mainly going to be about my current emotions. I need someplace to vent about…. well, everything. I feel stupid. Depressed. Angry – at myself, healthcare, doctors, everything. I feel like crawling into bed and staying there forever and hoping someday I will wake up with energy. Realistically I know that isn’t likely to happen, but I can hope.

Photo by Anthony Tran on Unsplash

It has me wondering, is there something wrong with me? Or was my primary doctor right and it is just because I am getting older? But then I see 40-60-year-olds running at 6 am. I see moms with their makeup done and looking amazing dropping their kids off at school at 7 am. Here I am, unable to keep my eyes open while having a meaningful conversation with my friends and significant other. This can’t be what everyone deals with every day…. right? And even if this is, how does everyone else do it? Am I just not that strong? Did I not pass the right “Adulting test” to unlock the secret to being awake?

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What kind of quality of life can I lead when I can’t sip a beer without falling asleep? I can’t do the things I love because I can’t keep my head up. All of my energy goes into staying awake while working. I am supposed to go camping soon, but I am worried I won’t have the energy to even hike like I love to do. It has now gotten to the point where I am forgetting simple words when having a conversation. My partner wants to talk about interesting things and his passions, but I have to tell him that my brain isn’t working well enough to process and respond appropriately.

I don’t understand why this is so difficult. I don’t understand why I had to go through the sleep study when it would’ve been cheaper and easier for everyone to just run some more blood samples. Now I have to continue to fight with doctors, insurance, and my bank account to get some semblance of answers, and that’s if I want to continue fighting.

I can only imagine that this is the exact process that people with chronic pain go through. Endless denials, tests, and money only to be told “There is nothing wrong, you are overreacting.” I’ve seen too many stories about doctors being dismissive of pain, and I thank the universe I do not have pain with this (though, who knows, it could be coming). At least with pain though I could point to where it hurts. Where do I point for fatigue?

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The sleep doctor gave me a print out of my results for my copy, but I haven’t brought myself to look at them at all. I already know its pointless to look. I don’t have the motivation to keep searching for answers. I’ve already spent $2,000 on just the sleep/nap study and I can’t afford to get an unspecified number of tests done for who knows how much cost.

I have an appointment with my psychiatrist next week. From the implication of the sleep specialist, he thinks its depression. My argument would be that the depression meds I’ve been on for 1-2 years would’ve changed something if that was the case. I didn’t bother arguing with him. His job is done and he checked for everything he could. I’m going to speak with my psychiatrist next appointment, and confirm that it is not ADHD and/or depression.

I keep seeing Facebook posts about ADHD symptoms, explanations, and “living with ADHD” and I relate to 90% of them. However, with my Mom likely having ADHD/ADD, it’s debatable on nature vs nurture. Regardless, I’ve learned to live with the quirks and I’ve got a decent handle on it (minus the fatigue).

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Depending on what my psychiatrist says is going to depend on if I’m going to be sticking with him or not. I went to him originally to help get to the bottom of this and to make sure my combo of meds was Ok for me. If he’s not going to help, then he’s not worth my time and money.

I’m hoping a weekend away and out of the house, I can find the strength again to power through and keep searching for an answer. However, I’m not sure where to start again. Maybe a new PCP can be my compass and point me in a new direction. I want to do more testing before the end of the year so I can hopefully meet my deductible and it won’t be out of my pocket, but time will tell if I can summon the courage and the strength to power forward.

Published by Anna Smith

Anna Smith is not my real name, and I am hoping to provide some sources, information, and explanations to others that I struggle to find and understand.

2 thoughts on “Excuse me while I scream and cry

  1. I relate well to this. I battled for two years, searching for answers for my pain. I have fatigue because of it, and so not quite the same, but can definitely relate to the doctors, insurance, money struggles. My biggest piece of advice to anyone in this situation is to be your own advocate and don’t give up. I hope you find your answers soon!

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