What It’s Like

Last night I got really tired around 8 or so. By sometime after nine, I was asleep. Woke up at 11:30, and was awake most of the night. Fell asleep again just before daylight, and woke up at 10:30. Not in too much pain, it’s a good thing. Then I stood up. Cannot stand up straight, shuffling instead of walking, panting instead of breathing because something is wrong with my breathing and I don’t know what or why. Do the teeth, litter box, etc., shuffle to kitchen to feed cat, make coffee and toast an English muffin. I can do these things by sort of leaning on, hanging off the counters. Shuffle back to couch, eat muffin, drink coffee. Body is hurting, exhausted, need to lie down. Maybe need to sleep more, I don’t know. I need to unload the dishwasher. I need to wash the dishes in the sink. I need to do something about getting the bathroom clean, getting the floors vacuumed, general tidying up. None of that can happen because I am just not physically capable. This is life with fibromyalgia/chronic fatigue syndrome. There is no control, no power, you are at the mercy of your body. Can’t sleep when I want to, can’t do what I want to do, can’t do what I need to do, can’t, can’t, can’t.

The longer you are ill, the worse it is, because your body just breaks down. Can’t exercise because of exhaustion, so muscles go. Talk about getting out of shape. I know there are people with this who do better, but there are those who have it even worse than I do, as well. Never good to compare your life to anyone else’s. It is sad and depressing and frustrating and miserable, but you just cannot give up. I cannot give up, although I have, to a certain extent. I have really just stopped caring about a lot of things. Mail piled up? So? Is there anything in it I really need to attend to? Do I even look like I care? I have two days a month that are for paying my bills, and I do those, but everything else just kind of goes by the wayside, and I just can’t bring myself to care. The apartment looks like a tip, and it used to bother me, but no more. Nothing I can do about it, so why stress myself, right? I really miss having a person come in and do the things I can’t, but it is not worth the risk right now, so living in a tip it is.

There is a good thing. My cat. Not just because she is cute and fun, but because it causes me to be responsible for another living thing. If it was just me, I think I would be much less with it, but she needs to be fed and have fresh water in a clean dish and the litter box needs to be scooped at least twice a day. I usually just check it every time I go into the bathroom. Stinky litter boxes are no fun for anyone.

But this is life with a chronic, debilitating, painful and exhausting illness. Just thought I’d put that out there. I make a concentrated effort to enjoy what there is to be enjoyed, and to have something to laugh at every day. Look at pretty pictures, listen to music that makes me want to move or just is relaxing for reading, watch a show here and there although I do not watch nearly as much as I used to. I do not miss regular tv even a tiny bit, just really happy to have no-commercial streaming. No soundbites. No orange man. It’s really a good thing.

I am never going to get better. I used to have good periods, then good days, then fewer and fewer good days, until now a good day is one that used to be considered a really bad day. But that is the hand I am dealt, and I can only play it or quit, and I am not a quitter. Keep on keeping on, that’s the best anyone can do. 🙂

Rambling. Just Rambling.

Reading an article from the New York Times about pandemic-proofing your habits, came across this sentence: “Things we had already figured out and relegated to the brain’s autopilot function — going to work, visiting the gym, taking the kids to school, meeting friends for dinner, grocery shopping — now require serious thought and risk analysis.” This is what having a chronic illness is like. Every single thing you do requires thought and risk analysis and also how much pain is this likely to cause, and then there is calculating energy expenditure, or how many spoons will this take and how many do I have left for today anyway. Spoon theory is a good way to make things understandable for those who don’t need to worry about such things.

Have been avoiding using my laptop recently, not only because I have been really struggling the past while. Pain, cannot sleep at night so sleep during the day, not being able to get anything done. But the laptop main reason I realized yesterday. It’s because looking out at the empty storefronts across the street is depressing. No life, no lights. Not liking that at all. So I moved the laptop to the coffee table, and here I am. 🙂

Had an okay Thanksgiving. I was able to do some things, so made candied sweet potatoes. baked a Marie Callendar pumpkin pie, and a Boston Market frozen turkey dinner. Sweet potatoes were great, as always. Pie was good but too sweet and too rich and the spices were all wrong. I have only eaten my own recipe pumpkin pie for eons. and this was nothing like it. Good, but not mine. The turkey dinner was mediocre, like all frozen dinners are, but it did at least have a bit of roast turkey flavor.

It’s barely winter, and the gray is getting to me already. And the hardly ever seeing another human, and then usually for only a couple of minutes while they are in the hall and I am inside. Am watching a Christmas movie every day to cheer me up, and because I cannot do decorations because Gertrude will destroy them. Such a cute kitty. LOL There are some really bad Christmas movies out there, but once in a while you get something good. I am saving White Christmas and Christmas in Connecticut for closer to the day. I would do a Christmas story, but you have to rent it. I try not to pay for things is I don’t have to. Bezos and Suckerberg have all the money, so there is not a lot for me to spend. If you are interested, I thought Jingle Jangle on Netflix was very good. 12 Dates of Christmas was good too, and Holly’s Holiday was kind of cute. Finished binge-watching Wild at Heart on Prime, a long running series set in Africa, which is beautiful in the show. Of course, they didn’t really show the slums, which are horrid. Some were featured in an episode of Wallander, and lord how we force people to live is a disgrace. Humans suck. But anyway, The series had a really impressive ending, which I was not expecting at all. And really, really beautiful scenery and animals.

We’re about done with November, so here’s a gorgeous picture from Afon Llugwy Betws y Coed, in Wales. I am ashamed to say I do not have a credit for it.

Checking This Out

10 Of The Best Survival Books For When Things Fall Apart, from Book Riot.

Last on the list is a book about black people and the outdoors. Isn’t it weird that black people’s relationship to the outdoors merits a book? Not really. Way back in the dark ages, when we first moved to New England from Colorado, we went to a nearby park with a friend. It had a lovely lake and a small beach with a lot of people just having fun. Around five o’clock, although it was midsummer and quite light still, everyone started packing up and leaving. We asked our friend why everyone was leaving and she replied that now is when the black people come to use the beach and swim in the lake. What? WHAT? There are separate TIMES for blacks and whites to swim in a lake? WTF was our reaction, but apparently this was the norm back then. I never quite got over that. I am white, but good grief, I could as easily have been born black, or yellow, or red, possibly green but I seriously doubt that. We had never knowingly witnessed discrimination in Colorado, and I don’t think it would have occurred to us that it could happen. We were still pretty young, early twenties, when we moved here, so maybe were just not aware, but it came as such a shock. Later on, same friend and her husband were walking with us in Newport when we passed a mixed race couple, and although he said nothing to them, he did express to us his disgust. Stunned is what we were.

My mom raised me to not look down on anyone because of color or dress or whatever. She always said it’s what’s inside that matters, and how the person treats others. That was what counted. Being from Puerto Rico, I always thought she must have suffered discrimination since coming to the mainland, but she never spoke of it. Just made sure we did not discriminate against anyone.

Anyway. the book reminded me of the lake and how my husband and I felt about it at the time. Kind of took the shine off of being in New England, which we only knew from old Doris Day movies and the like. Priscilla curtains and widow’s walks, Old Cape Cod, and all that jazz. Which reminds me. You can rent Christmas in Connecticut, one of my favorite movies ever, on Prime for around 3 dollars. Which reminded me that when my sister came to visit us, she mentioned something about Massatusetts. Seriously, sister dear? We don’t live in Massatusetts, since there IS NO SUCH PLACE. Made me laugh, anyway. 🙂

Looking for a picture to illustrate this post. Go Google blacks and whites swimming together. Surprise! And it’s not dolphins.

More Thinky Thoughts

I am rereading ‘Wings of Desire’ by Nos4a2no9, a Due South fan fic. Read this and immediately knew the answer:

“These children are beautiful, and he wonders what happens to make them
into the hard-faced adults who pass him on the street.”

Capitalism. That is the answer. The constant grubbing for more, more, more. The constant fight to survive with limited resources. Greed. All the things capitalism brings to humanity. I believe people were meant to be a community, each of us bringing something positive to the whole. Instead we have become an ‘every man for himself’ destructive people. Two or three people own almost all of the wealth in the US. Do they share? Do they use their billions to make the lives of other better? No. They hog every cent to themselves, because that is what capitalism says is the way. Maybe some day we will outgrow this madness, but i am not at all certain that we are going to survive long enough for that to happen. Right now we are deliberately destroying ourselves and our means of survival, which is the entire ecosystem of the planet. Here is a quote I find very apt right now.

Good Grief!

It is appalling, but not surprising, to see how childishly the orange man is behaving over having lost the election. Then there is this, from The Guardian:

Mark Zuckerberg has defended his decision not to suspend Steve Bannon from Facebook after the former Trump adviser called for the beheading of Dr Anthony Fauci. The Facebook CEO told staffers that Steve Bannon had not violated enough of the company’s policies to justify his suspension from the platform.”

How badly must one behave in order to get Suckerberg (my dd’s name for him) to do anything? I imagine anything that costs him profit would do it.

November

Finally had to close the window as very cold air was blowing straight in. Window has been open for days, and it maintained a steady almost 70 degrees in here. Colder at night, but only upper 60’s. It felt muggy for a bit last night. Muggy. In November. Weird weather. Weird year.

Had a really good day Tuesday for no known reason, then yesterday and today were the usual crap. On the couch, hobbling around. Doing nothing. But got several things done Tuesday and it almost felt like a was a real person for a while there.

More people getting covid, my friend exhibiting riskier and riskier behaviour. It worries me a lot. She is the one friend that always, always makes me laugh and we always have fun when we are able to get together. I have expressed my concerns, but it is her life to live as she sees fit, and I can only stand by and watch. I don’t think her husband says anything about it, either. She did make me a new and better fitting mask, so that was nice. I now have two, both made by her, so if one is not dry from being washed, I have a backup. Not that I need a mask very often, since I don’t normally go out, and the homemaker has only just been coming in briefly. But we are always masked for that.

I actually cooked on Tuesday. Broccoli pasta. So easy, so doable for me. Tasty, too. I got a very small broccoli crown and just separated it into florets and boiled them briefly with the pasta, meanwhile you saute garlic and pine nuts in olive oil, drain the pasta and toss it all together. Add tons of parmesan, which I know I have some in the freezer but was unable to find it, so no cheese. Was still very good, though. Good olive oil makes all the difference. I used Campanelle, too, my favorite pasta, cause it’s pretty and reminds me of the flowers, and it catches the pine nuts in the curls. Neat. I was planning to make unstuffed cabbage today, but too much pain. Maybe tomorrow. I used to always make cabbage rolls in the autumn, but too much energy to do the leaves and divvy up the filling, etc., so am just going to shred the cabbage and put it all into a pan with the tomato sauce and either cook it on the stove top or bake it. Not sure. You do the rolls on the stove-top, but not sure how it will work this way. Experimentation. It’s a good thing. 🙂 While I was looking for a picture, I came across this. Looks good, I think.

https://www.marthastewart.com/898871/campanelle-walnuts-ricotta-and-lemon

Stay safe, everyone. Wear your masks, please. It is a health issue, not a political issue. Keep your loved ones safe even if you don’t care about your self.

Covid Fees?

Watch out for Covid fees
From The New York Times Coronavirus Briefing Newsletter.
Health care during the pandemic has become more costly. Providers need to purchase protective gear and sanitize equipment more often — even as their revenue declines. Dentists, for example, have lost billions as their patients have postponed care, and assisted-living facilities have had to take on fewer residents to help prevent infection.
To address the financial shortfall, some health providers are charging surprise “Covid” and “P.P.E.” fees, according to bills examined by two Times investigative reporters, Sarah Kliff and Jessica Silver-Greenberg.
One woman found a $45 fee tacked on to a dental cleaning in New York City. An 87-year-old resident in assisted living was charged a one-time fee of $900 for masks, cleaning supplies and meal delivery. The bill for a woman who took a one-mile ambulance ride included a $60 charge for personal protective equipment, even though she was already wearing a mask.
Some state attorneys general have said that charging patients directly can take advantage of vulnerable consumers or violate health insurance contracts and consumer protection laws. The new charges range from a couple of dollars to nearly $1,000 and seem to be especially prevalent in dentists’ offices.
“If someone sees a P.P.E. or Covid fee on their medical bill, they should feel comfortable asking questions about it,” Sarah told us. “You might want to ask your health provider why it was charged, or ask your insurance company why it wasn’t covered. If your health provider is billing you directly, you might consider filing a complaint with your state attorney general’s office. Maryland, Connecticut and New York have already outlawed this type of practice, all after they received consumer complaints.”
You can also be proactive, she said, and ask if any new fees have been implemented since your last visit.
“This is obviously easier for some services than others — you can do this for a trip to the dentist, but not necessarily a ride in an ambulance,” she said.

Calm

It’s freezing here, and I am thankfully not outside, but calm woman reading. Just realized that it’s election night, and I am calm. Listening to my Calm Instrumental station on Pandora, reading The Witch Elm by Tana French, which is nothing like I though it was going to be, but very very good, baking leftover Kraft mac and cheese with crumbled bread dotted with butter on top, for my dinner, because even though it feels like 9 pm, it’s really only 6:30. And I hadn’t thought once about the election until it suddenly just popped into my head. I will wait til tomorrow night or the next day to look for results, although I imagine it will be hard to avoid them. But I am calm and not stressing and that is a good thing.

Found this while looking for an illustration, and it just cracked me up.

Anxiety?

Just saw a headline, How to Cope With the Anxiety of Watching Election Results Alone. Don’t. That’s my advice. I don’t have regular or cable tv, so no chance of doing it anyway, but I wouldn’t. I may not look for a day or two, just like I did last election. Let it settle first. If it’s bad news, dig a big hole and crawl in. It it’s good news, celebrate like crazy.

We need to do something about algorithms, because just feeding people more of the same tends to create tunnel vision, I think, and you cannot see any other point of view. I do consciously try to read things with differing opinions, even though sometimes they make me cringe, but you really need to be informed to make good decisions. Just read an article about books and algorithms, too, which just point you to more of the same on Amazon and other sites. I used to wander the shelves in the library and pick up anything that caught my eye. Things I would never see on Amazon or wherever, just because they are not my usual choices. I never really realized how much the online world affects us, not in a good way. It seemed like an excellent way to see other points of view, find out from those living it how other people manage in their countries, personal experiences, meeting people from all over the planet. And then along come algorithms, and they gradually narrow and narrow and narrow your vision, your sources, your information. This is not a good thing in my opinion. Don’t know how to fix it, though, which is the big disappointment of my existence. I don’t know how to fix anything. Please vote, if you haven’t, and please vote them out. Thank you.

November

Gray and dreary, and I just realized it will be getting dark in three hours. Three hours. Got to start getting up earlier. Like that’s going to happen. Feeling the usual not that great today. Yesterday was better. There are good days here and there. It’s not all fog and pain and exhaustion. Thank goodness. Snow is all gone, but it was pretty while it lasted.

Think I’m going to couch and read for a bit. I am reading The Witch Elm, by Tanya French. Different from her other books I’ve read, but good. I read all of the Faith Martin Hillary Greene books, and I’ve read In The Woods by French, among the zillion other books I have read. I like mysteries. I’ve read all of the Spenser books, all the Agatha Christie books, several times, all the Sherlock books, again several times, Nero Wolfe, Dick Francis, that’s all I can think of in the midst of brain fog. I usually go for a mystery or a non-fiction. I have always been a reader, from before I knew how and would pretend to read the paper. I’m done. Too tired and too foggy to really think about what I am writing here, so hope it makes sense. Happy November, everyone!

First Snow

And it is coming down. When I got up at 9, you could almost mistake it for rain, but it just keeps getting heavier and heavier and the trees are coated and cars and even the parking area across the street is getting coated. I love snow. It’s only just above 30 degrees F, too, so a bit chill. I have my heater fan on under the desk.

It’s almost change the clocks time, too. Means day ends much sooner. Would be okay I guess if I was an early riser, but sadly, I am not now nor have I ever been. I am a definite night owl.

Had a pretty good day yesterday, took three ibuprofen, which helped. Today, not so great. Allergies, sinus headache, tired. Took two 8-hour Tylenol, will see if they work as well as the ibuprofen does, although I know two is not really enough. I try not to take too many too often, because I like my liver. 🙂

Am I the only one dreading election day? Last time, I did not turn anything on for a couple of days, cause I just did not want to know. Was a crushing blow when I did. I hope this time goes differently, but I am not overly optimistic. I ask myself how anyone can think the orange man is a good choice, but then I remember the article I read about how we don’t all see the same information. Algorithms feed you more of what you’ve already seen, so you only really get one point of view if you get all your news from Facebook or whatever. The one that reinforces what you already saw. This is so bad for all of us. Differing points of view make it easier to make good choices. I have kind of given up trying, though. Whatever happens, I will have to live with the consequences, and so will the rest of us. Scary if things go on the way they have been for the past four years. ;(

This was taken a couple of hours ago. Was trying to post more, but for some reason I cannot download from gphotos to my hard drive, or send them to Dropbox and have them work. WTF? Just going to enjoy looking at the snow. Can I take a photo with my laptop? 🙂

Pain

Major flare popped out of nowhere. Started last night. Fingers hurt, then hands and one foot started cramping. Could not hold my Kindle and had to sort of prop it to continue reading. Then, when I woke up today, everything is hurting. Bend my knee to get more comfy, thigh muscles start to hurt so have to move again. Hands hurt, feet hurt, everything in between hurts. Even my teeth hurt. And on and on. Don’t know what brought this on, but then I never do. Will be better tomorrow, she says confidently. Meanwhile it’s me and the couch, with the occasional Gertrude thrown in. I did manage to feed and fresh water her, so yay. Hope everyone else is having a good day, and have either voted or are about to.

Safety

I am worried about one of my friends, because she told me today she and some friends got together at the friend’s house. Inside. She seems to be taking more and more risks, and nothing I can say makes a difference to her. I decided against having the homemaker come in and will just have her do shopping, because she comes here directly from the nursing home where she works. I do not think I am irrational about this. I may have mentioned ten or twenty times about being ill in December, and I doubt that was the virus. I was really, really sick and breathing was very difficult, so I do not want to risk getting the actual virus because I don’t think I would survive. Seriously. My friend could bring home the virus to her husband, even if she didn’t get sick from it. Not my business really, and nothing I can do anyway.