The terrible, horrible, no-good season
It's not as bad as all that, but it really hasn't been a good year, health-wise. I am really only able to be out of bed a few hours a day, which is way down from last year.
I am now sleeping better thanks to negotiating with my sleep doctor to turn the bipap down. The tradeoff is I have more hypopnea vs. not waking up in pain after four or five hours, so I feel sort of suffocated again, but that's still preferable. I'm still not usually sleeping more than six or seven hours in a row, I think because the bad patterns I got into have really ingrained my insomnia. Despite having better stretches of sleep and more sleep on average, I'm still exhausted all of the time, crashing out throughout the day sometimes twice a day for hours at a time, and being very low ebb even if I'm technically awake. I don't know if I'm in a worse stage of fibro or just having an annoyingly slow recovery from a very long and intense period of sleep deprivation. Overall pain levels are up but not overwhelmly so, just enough that I find I move more slowly and tend to be clumsier and slow to react because of the extra energy that's going into managing the pain.
My brain fog has been extreme; today's shining example was managing to LOSE JACK when my mom dropped in. She's used to her non-fleeing dog so closing doors is optional for her, so there was a while when he wandered outside and then... I must have closed the door with him still outside (!). Now, the late and sorely missed Moose would have immediately lit out for the hinterlands, and we would have gotten a call from the SPCA a day or two later after someone found him scarfing barbecue out of a trash can up to ten miles away. Jack, on the other hand, waited forlornly by the back door to be let back in. GOOD dog. And I am a BAD owner for not checking for him when I closed up.
What I have been doing: walking. I am probably averaging a skip once a week, which is not optimal but it could be worse. It is harder to pry me out of bed even with the earlier morning, but once I'm up I usually do okay unless it's cold and damp. Some days it is very hard to get back up the hill, or I don't want to go down at all, and it's hard to keep up with Brad even though Jack slows down to sniff things. (Brad normally wrangles Jack on our walks because even with the halter, Jack tires me out with his tugging.)
Also: making lunch, but slowwwwwly. I'm often crashed out around lunch time and groggy and very slow-starting so it can take me an eternity to throw together a salad. Uh. Well. Yeah, that's about it. I'm reading a little more but even a little web browsing or a book can tire me out, so it's in little bits and pieces.
Socially this has been really bad because I'm very physically isolated because I can't get out much, and now I'm having a terrible time even socializing online; I had to drop LOTRO because it's too high energy for me and I sorely miss it, both for entertainment and socializing, but there's too much on my screen and it gives me migraines and makes me dizzy when I try to log in. It's VERY frustrating having trouble with 3d games; I haven't been that bad for years and I don't like being back there again. I don't really know what to do about this because I don't have enough energy to go out more or do more online or anything. I am able to manage skype text chat most days (I can't really handle voice well at all but I like skype's persistant chat that I can use from multiple clients, unlike the annoyingness of aim), but I'm sporadic and not a lot of people I know hang out on skype. Facebook is too UI busy (even with FB Purity) for me to do more than poke it vaguely every other day or so, and twitter ditto even though I've found the tamest UI I could. I can't really cope with anything very structured most days; it took me way too long to put together this post and it's super rambly.
Despite all this, the house is coming together, but more and more things are gating on me; I need to go through the bookshelves and the clothes. It's very hard to summon enough energy to do that when I have trouble making lunch or getting up to eat dinner.
I don't really have a plan other than 'sleep a lot and hope it improves.' I THINK it is trending vaguely upwards; I'm making it to the farmers market again, at least. I had to send Brad to way too many this spring, which is very low ebb indeed when that's about the only time I get out other than the morning walk.
Oh yes and there is a chronic fatigue specialist at Stanford that my sleep doctor used to work with and I am now on his FOUR YEAR waiting list. He is supposed to be good but his expertise is in infectious disease and I don't know if that will apply to me or not, but it is an excellent thing to thoroughly rule out especially if he is looking into esoterica which he seems to. In four years, I guess.
P.S. I felt really bad about being so whiny and then realized that maybe it is slightly legitimate to feel whiny when most days it is TOO HARD to watch TV or surf the web, not exactly high-test activities, on my computer that is set up for me to use IN BED. This actually legitimately sucks and I very much hope it is just a phase that I am already recovering from. Yeah, #firstworldproblems and I'm grateful for that, at least.
I am now sleeping better thanks to negotiating with my sleep doctor to turn the bipap down. The tradeoff is I have more hypopnea vs. not waking up in pain after four or five hours, so I feel sort of suffocated again, but that's still preferable. I'm still not usually sleeping more than six or seven hours in a row, I think because the bad patterns I got into have really ingrained my insomnia. Despite having better stretches of sleep and more sleep on average, I'm still exhausted all of the time, crashing out throughout the day sometimes twice a day for hours at a time, and being very low ebb even if I'm technically awake. I don't know if I'm in a worse stage of fibro or just having an annoyingly slow recovery from a very long and intense period of sleep deprivation. Overall pain levels are up but not overwhelmly so, just enough that I find I move more slowly and tend to be clumsier and slow to react because of the extra energy that's going into managing the pain.
My brain fog has been extreme; today's shining example was managing to LOSE JACK when my mom dropped in. She's used to her non-fleeing dog so closing doors is optional for her, so there was a while when he wandered outside and then... I must have closed the door with him still outside (!). Now, the late and sorely missed Moose would have immediately lit out for the hinterlands, and we would have gotten a call from the SPCA a day or two later after someone found him scarfing barbecue out of a trash can up to ten miles away. Jack, on the other hand, waited forlornly by the back door to be let back in. GOOD dog. And I am a BAD owner for not checking for him when I closed up.
What I have been doing: walking. I am probably averaging a skip once a week, which is not optimal but it could be worse. It is harder to pry me out of bed even with the earlier morning, but once I'm up I usually do okay unless it's cold and damp. Some days it is very hard to get back up the hill, or I don't want to go down at all, and it's hard to keep up with Brad even though Jack slows down to sniff things. (Brad normally wrangles Jack on our walks because even with the halter, Jack tires me out with his tugging.)
Also: making lunch, but slowwwwwly. I'm often crashed out around lunch time and groggy and very slow-starting so it can take me an eternity to throw together a salad. Uh. Well. Yeah, that's about it. I'm reading a little more but even a little web browsing or a book can tire me out, so it's in little bits and pieces.
Socially this has been really bad because I'm very physically isolated because I can't get out much, and now I'm having a terrible time even socializing online; I had to drop LOTRO because it's too high energy for me and I sorely miss it, both for entertainment and socializing, but there's too much on my screen and it gives me migraines and makes me dizzy when I try to log in. It's VERY frustrating having trouble with 3d games; I haven't been that bad for years and I don't like being back there again. I don't really know what to do about this because I don't have enough energy to go out more or do more online or anything. I am able to manage skype text chat most days (I can't really handle voice well at all but I like skype's persistant chat that I can use from multiple clients, unlike the annoyingness of aim), but I'm sporadic and not a lot of people I know hang out on skype. Facebook is too UI busy (even with FB Purity) for me to do more than poke it vaguely every other day or so, and twitter ditto even though I've found the tamest UI I could. I can't really cope with anything very structured most days; it took me way too long to put together this post and it's super rambly.
Despite all this, the house is coming together, but more and more things are gating on me; I need to go through the bookshelves and the clothes. It's very hard to summon enough energy to do that when I have trouble making lunch or getting up to eat dinner.
I don't really have a plan other than 'sleep a lot and hope it improves.' I THINK it is trending vaguely upwards; I'm making it to the farmers market again, at least. I had to send Brad to way too many this spring, which is very low ebb indeed when that's about the only time I get out other than the morning walk.
Oh yes and there is a chronic fatigue specialist at Stanford that my sleep doctor used to work with and I am now on his FOUR YEAR waiting list. He is supposed to be good but his expertise is in infectious disease and I don't know if that will apply to me or not, but it is an excellent thing to thoroughly rule out especially if he is looking into esoterica which he seems to. In four years, I guess.
P.S. I felt really bad about being so whiny and then realized that maybe it is slightly legitimate to feel whiny when most days it is TOO HARD to watch TV or surf the web, not exactly high-test activities, on my computer that is set up for me to use IN BED. This actually legitimately sucks and I very much hope it is just a phase that I am already recovering from. Yeah, #firstworldproblems and I'm grateful for that, at least.