Tag: Research

Summer, Sun, & Sleep

by Alfredsson Jane, posted in Alfie Stories, Dogter Zuc

I love the summertime. I get to play outside and swim! When I get tired out from my shenanigans I flop down on the grass or couch and nap my face off until I’m primed to go again. Usually when that happens, Mom’s ready for one too, so we cuddle up together. Speaking of Mom, she’s doing pretty great right now. A lot more tired than usual but we’ve been going for walks and having a lot of fun. Zuc even seems to be super hyper and loving life! He loves the summer even more than me. His favorite pastime is definitely sunbathing, weird, I know.

Mom is switching jobs yet again. We’re all going to miss The Lodge but things were getting out of hand. Now she works at the same place as Dad! For now they get to go to work together. It’s easier for us since they come home at the same time. Mom says not to get used to it though because pretty soon she’s going to switch to nights.

Uh, Mom, hello? You’re narcoleptic!

Dogter Zuc had to clear this one up for me… Narcolepsy doesn’t just mean Mom falls asleep randomly during the day. It actually means that Mom has no sleep cycle! Can you believe that! She’s sorta like me and can sleep all day or all night or even both sometimes. I do get cranky if I don’t sleep at night though. Anyway, in Mom’s case, the neurotransmitter thingies in her brain that tell her body when to release melatonin and other chemicals like it are being destroyed, most likely by her own body. She falls asleep all the time because her body is crazy confused. So, if she just switches her medications and routines, working the night shift should be a breeze!

Then we just have to watch out for Fibromyalgia. We’re not sure how this is going to fit into it all but we’ll see I guess.

Dogter Zuc

by Alfredsson Jane, posted in Dogter Zuc

Hello, I am Alfie’s older (and smarter) brother. I help mom do research and cool things like that online. Yesterday we spent a few hours looking things up about fibromyalgia. First I would like to explain what fibromyalgia is because I know some people don’t really understand.

Fibromyalgia is described as widespread pain. That’s a simple way to just sum it all up. It’s really a very broad and somewhat scary diagnosis, especially since humans don’t know what causes it or how to help those affected by it. Have you ever grabbed a fiberglass stick and immediately regretted it because your mouth stung like a million little bees were in it trying to escape? I think it feels like that in your muscles, all over, all the time- that’s what I’ve gathered from mom’s experiences anyway. So a fibro person suffers all day long in pain- that pain can only be tolerated for so long before it starts to effect other parts of the body. “Fibro fog” is a state where you just feel like you’re not with it. There’s like a haziness to your brain. You can’t remember where you hid your bone, or even if you hid your bone already. This happens from the fatigue. When you’re in pain your body has to compensate for that. It’s working in overdrive and before long you run out of the energy to do other things because your body has to focus on that darn pain and trying to get rid of it. Along with the pain and mental impairment things like anxiety and depression may manifest. We also see IBS, restless leg, and other types of syndromes. People with FMS have these tender points on their bodies- if you so much as touch these spots sometimes the person will yell out in pain. I always forget where they are and step on mom’s. It is not a good day when that happens.

Overall fibromyalgia is not an illness we can see. If we pay close enough attention we can see these people suffering and that is how we know for sure it is a real thing. There are so many people out there suffering, we need to help. I will help by making sure to always notice when mom is in pain and doing what I can to help her. We will also continue our home research and maybe someday we will be able to take it to the next level.