Monday, January 13, 2020

New year, new focus

It's been quite a while since I posted anything of substance here. I intended to bring things back to life here over the last couple years. Unfortunately, a few chronic health conditions resurged with a vengeance. The combination of pain and fatigue has kept me mostly focused just on work and the basics. I haven't done much in the way of gaming or miniatures, so I haven't felt a real urge to post here. Since it looks like the symptoms aren't going to subside any time soon, I'm going to try to write through them. I have quite a few ideas for posts, and writing will hopefully get my mind off of some of the medical stuff.

Just so everyone knows and I don't have to field a lot of questions, I am dealing with a combination of complex post-traumatic stress disorder (CPTSD), fibromyalgia, chronic fatigue, narcolepsy with cataplexy, and either chronic Epstein-Barr or Sjogren's syndrome.

The CPTSD makes me hypervigilant and irritable. The hypervigilance means that I am constantly in a state of heightened awareness. My brain treats everything around me as a potential threat, which makes me both anxious and jumpy. I also have a low noise tolerance, which means I am irritated by any loud noises and some particular noises regardless of their volume. At work, I keep the door of my office closed as much as possible to mitigate some of this. At home, I have headphones or earbuds with music on most of the time. Otherwise, I wear a noise dampening headset like people wear when shooting, use earplugs, or use a white noise machine. When I am watching TV, I use Bluetooth earbuds or turn the volume up on the TV to block out other noise. I use a white noise machine when I sleep.

Fibromyalgia and chronic fatigue go hand-in-hand. Some doctors consider them to be the same condition, diagnosing one or the other depending on whether pain or fatigue is more significant. Since I seem to be winning the symptom lottery, I have both in equal measure.

Fibromyalgia causes chronic pain in the muscles and connective tissues. On a regular pain scale, I normally rate around 4-5 out of 10. I am constantly aware of my pain, and it is often distracting. I have occasional days where my pain gets into the 7-8 range.

Aside from pain, my fibro makes me hypersensitive sometimes. The feel of certain fabrics or materials is particularly abrasive so it feels like sandpaper on my skin. In some cases, clothes simply hurt to wear. Same thing with bedclothes - sheets and blankets feel alternately heavy or abrasive. I am also sensitive to strong smells and perfumes most of the time. These cause me to get flushed and can cause a rash if they're strong enough.

I also get periods of "fibro fog" where I will forget things, have trouble with word finding, and seem a little disoriented or flaky. I can go into a room and forget why I went there. I can forget that I am in the middle of a task, and I can forget regular activities without reminders. I rely on post-it notes a lot! I also have reminders on my phone for a lot of things like taking my medications.

My chronic fatigue has been increasing over the last couple years. That is probably related to something other than my regular fibromyalgia fatigue. My fibro fatigue makes me feel tired, but also weak. I have trouble lifting anything heavy and get slight tremors throughout my body. Sometimes I think I've felt a small earthquake only to find that it was just my larger muscles all shaking at once.

The narcolepsy has a few symptoms, but nothing severe other than sleep interruption. I can fall asleep anytime and anywhere within a couple of minutes. My normal sleep latency (time from lying down to falling asleep) is around four minutes. I enter dream sleep very quickly after going to sleep and tend to stay in dream sleep a lot longer than neurotypicals. That means that I get significantly less restorative deep sleep. I have a sleep cycle (time between periods of shallow sleep) of about an hour. The longest cycle I've had recorded in my sleep studies was just over two hours. All of this contributes to me being drowsy most of the time and my body taking longer to heal.

If I am left alone in a dark room with no distracting sound, I can sleep for at least 22 hours. In all of my sleep studies, the technicians have had to rouse me in the morning, because I slept past all of the testing periods. I was still able to go to sleep every two hours after the overnight studies.

Cataplexy is a loss of muscle tone and responsiveness in response to some emotional extreme. During an episode, I remain totally aware but typically cannot move or speak. People have wondered if I had a stroke when they have seen me have an episode. My trigger for this is normally high stress and "fight or flight" situations. Unanticipated loud, sharp noises, like firecrackers or gunshots, are especially significant.

And to round things off, I have either a chronic Epstein-Barr condition or Sjogren's syndrome. Whichever it is, it considerably magnifies the fatigue from the fibro. It also causes additional aching, which is a different kind of pain to my normal fibro pain. If you've ever had mononucleosis, that's what it's like. This has been active for just short of two years.

To manage all of these, I take around 30 pills a day. The medications normally control most of the symptoms, but I have regular days where I can't function for more than a couple of hours.

That's what has been keeping me occupied the last couple years. I'm hoping to be able to do more of my hobbies this year. It all depends on how my various conditions are acting and how much energy I have to devote to everything else outside of work. Work is my first priority, partly because I really enjoy what I do and partly because I really need the insurance. After that comes basic self-care. Then comes all of my hobbies.

Long-winded explanation done, here's some of what I want to accomplish this year.

1. Get back to some regular gaming, even if it is only a couple hours here and there.

2. Develop more of my game world. I have a lot of ideas; I just need to commit them to paper (bits?).

3. Paint some miniatures. I have a lead, pewter, and plastic mountain that would terrify weaker people. Time to start moving more of it to the painted side.

4. Read more. I'm part way into the Wheel of Time series, and I want to finish that. I also want to read more of the Appendix N and related stories.

5. Regardless of everything else, blog more. Even if I post infrequently, I want to get more posts up this year. Likewise, I want to start keeping up on other blogs more than I have. Since the demise of Google+, I've lost regular contact with a lot of the online gaming people I used to follow and interact with.

There's my new year's post. Sorry for it going so long. If you made it this far, I hope we all have a better year in 2020.

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