It is ten degrees Fahrenheit out there. It’s not that warm in here, either. Fortunately, I have lots of ways to warm up, including Lunatic’s favorite ugly but toasty warm blanket. Brrrrrrrrr. It’s a good time for lots and lots and lots of lovely hot tea.
Just in case you didn’t know.
I am finally having a half-way decent day. Pain and exhaustion are not fun. My homemaker came for three hours today, to make up for Monday. I told him he had his work cut out for him. Then I had to explain what that means. He’s so cute. He cleaned everything. He cleaned to stove and the burner trays and the burners. Did not ask him to do that. Did a great job on everything, too. Glad I kept him. He and Lunatic did not start out well, but just keep getting better and better. Would have missed out if I had decided against them.
I am eating lamb vindaloo from Trader Joe’s. I love Trader Joe’s. Lamb Vindaloo was mentioned in Red Dwarf, so when I saw it I went for it. It is very good, and set-your-mouth-on-fire hot. I like hot.
Watched the last season of Broadchurch after refreshing myself on what went before. What a good show. I wonder if there will be more. Looking forward to more Shetland, if it ever gets to Netflix. The last season of Longmire is up, too. Looking forward to that. There are some really good shows out there, and it is so great to watch without commercials. Binge-watching is now my fav thing. Me and Lunatic and a blanket on the couch. It’s a good thing.
Hope you all had a great Christmas, or Solstice, or whatever you celebrate. I’m Solstice, myself, with the Christmas tree and all. 🙂 Happy Holidays everyone.
This gallery contains 5 photos.
Just took this one. 1:40 pm.
Don’t know how odd it is, but I collect information. I am an information junkie. I have a ton of bookmarks, and a ton of hard-copy info on just about any subject you can imagine. I like to know things, I guess. 🙂
Here is something that bothered me: “Fans have been criticizing the studio producing the Fantastic Beasts sequel, and J.K. Rowling, for the decision to keep Johnny Depp on the cast in light of allegations of domestic abuse made by his ex-wife Amber Heard. ”
Men are pigs. I get that. But allegations are not proof, and what happened to ‘innocent until proven guilty’? All of a sudden, men everywhere are being condemned, fired, ostracized for things that have been ‘alleged’. When several women allege something, I tend to believe them, but at the same time, we need to be sure of what we’re doing.
Remember the Daycare Child Abuse craze several years ago. Ridiculous allegations were brought and people were even imprisoned for things that there was no actual evidence or proof of. Lives were ruined because of what sounds a lot like some form of mass hysteria.
Maybe I just think too much. Oh, well.
I used to. Belonged to all those record clubs (buy one, get 10,00 free). Well, maybe not 10,000, and not really free. But when my husband left, he took my records and my record player, among other things, so then later I bought cd’s. Now I have a bunch of cd’s I never play, because YouTube. You can find any music on YouTube.
So after moving to 3 mg Prednisone last Wednesday, I went through several days of pain, so much that I cancelled my homemaker yesterday and slept til 3:30 pm. Much better today. It takes a while for my body to adjust to the lower dose, and it is not fun during the process.
Went to Thanksgiving dinner at the restaurant with DD2 on Thursday. Fancy schmancy place in downtown Providence, not far from Atwell’s Avenue, with the pineapple.
Here’s what I wrote my friend Tess about it.
“Very nice place, attached to the Omni Hotel, across the street from The Providence Journal building. Very posh, very loud. Need some sound-proofing tiles or something. Dinner was good. Not spectacular, but very good. Turkey was so-so, more like processed turkey, but the veg were really good. Real mashed potatoes, cubed sweet potatoes cooked with something tasty and not completely covered with marshmallow stuff, and green beans perfectly cooked with onions, bacon and sliced toasted almonds. Kris took the leftovers home. Not the turkey, just the veg. Stuffing good, cranberry sauce had orange and cinnamon, very nice. We ordered both desserts and split them. The pumpkin cheesecake was nice, but not really cheesecakey, and the carrot cake was delicious and no nuts, which made Kris happy.
Sorry to say it was my dad when he was drinking. He was a violent alcoholic, and I was terrified a good deal of the time. Not-drinking, he was the sweetest, kindest, do anything for you, shy man. Not really afraid of much now, maybe the thought of some random bug crawling on me.
Turns out I don’t really have any business casual clothes. After years of just being here by myself and only going out to casual eateries, my wardrobe consists of jeans, sneakers, and tee shirts, pretty much. No way to go shopping, either. Maybe I could color my sneakers black with magic markers, but the pants thing doesn’t really have a fix, and I only own one skirt, and there is not top that goes with it. I am hopeless. Illness changes your life in ways you don’t even really realize.
Turns out my homemaker is a Muslim, so today we had a very interesting talk about religion and me being atheist and all. He is very knowledgeable for someone so young, although maybe all Muslims are. He is the first I have interacted with that I am aware of, and definitely the first I have discussed religion with. Learned some things, one of which is how alike all major religions are. How ironic is it that we all share the same basic beliefs, and yet use any small differences as excuses to hate and even murder each other. You just can’t seem to get past the basic flaw in humanity, which is hate, kill, look down upon any and every one who is not exactly like yourself. Sad. If there is a god, and he did create us, either he made a huge error somewhere along the process, or if he made us like himself, he is a very flawed character. I am happier being atheist.
I did feel it necessary to question one thing. The Koran seems to condemn homosexuality, like the Bible does. So if, as he says, the Koran is the last written of the four major books of religion, and the most unchanged and perfect, is it implying that, if god made each of us, that in the case of homosexuals, he made a mistake? God was wrong? How can that be if god is omnipotent and perfect and does not make mistakes? Seems a bit of a contradiction there, at least to me. He didn’t really have a good rebuttal for that, and I think it made him uncomfortable, which was not my intent, but if I have a question, I’m going to ask it, cause I have no tact, as my friend Beth delights in reminding me frequently. No tact and no filters. Religion puzzles me, because it does seem that it used for hate more than for good, in spite of what the religious people would have you believe. I am proud to be atheist. I do my best to do the right thing and treat people with kindness and compassion, because it is the right thing to do, not because some religion tells me I should. If I only do right because I’m afraid of retribution, then I am not really a good person.
Lots to think about. I do love a good discussion, and very few people seem open to discussing things without getting angry or resentful. Discussions are not arguments, they are exchanges of views, sometimes heated exchanges, but not angry or malicious exchanges. We don’t talk enough, we don’t hear other people’s views enough, without our defenses going up. There’s nothing to defend against. Your point of view is yours, mine is mine, and I learn from hearing yours, as I would hope you learn from hearing mine. Doesn’t mean minds are changed, or attempts made to change them. Okay. Done.
Okra. Definitely okra. Probably liver, too, but definitely okra. Ick.
Re yesterday’s menu, the only thing on there that I don’t approve of is marshmallows on sweet potatoes. No. No, no, no. My dad made the best candied sweet potatoes, with nary a marshmallow in sight. He cooked the potatoes, peeled and sliced them, and layered them with butter, maple syrup, brown sugar, cinnamon, and nutmeg. Then he baked them til the top was crispy. He used a 13×9 pan, cause there were five of us, plus guests. Too deep and the potatoes don’t get the right finish. My dad was a fabulous cook, so was his dad. He even made his own waffle cutter for fries, among other things. He made a steak roll, with some kind of bread stuffing in it, that was fantastic. Oh, I must be hungry. LOL Lemon meringue pie. Deep-fried shrimp. Onion rings. My mom, on the other hand made pickled watermelon rind, watery spaghetti sauce, other barely edible things, with the occasional spectacular dish, like pot au feu, which was the best thing ever invented in the world. I make great toast. I used to cook a lot, and always from scratch, but once I became ill, it sort of fell by the wayside. I miss cooking sometimes, but it’s just not on, except for the rare good day when everything comes together. Guess I’m done for now.
Dumb questions, but trying to get some inspiration here. Been struggling. Pain, no energy at all, no motivation, no anything. Very depressing, when you think about it. Nothing to do that I am able to do, nothing to look forward to. Well, this year, surprised the hell out of me, too, DD2 is taking me out for Thanksgiving dinner. After year after year of turning me down when I asked if she wanted to get together, out of the blue came this. I’ve gotten quite used to spending every holiday alone.
Going to some snaz place in Providence, ‘business casual’ dress. Bit of anxiety for someone who wears jeans everywhere. Do I even have any clothes that qualify as ‘business casual’? The menu lists ‘amuse-bouche’, which shows you it is a fancy restaurant. LOLOL Hoping I am good on the day, and DD is in a good mood, because she is fun and a very interesting conversationalist. We talk about politics, religion, climate change, her weird sister (I know you read this DD1. 🙂 )all the things nobody else I know even wants to touch on. So that’s something to look forward to, except I don’t really do that because I can never be sure it’s actually going to happen. I never know til the day, sometimes the hour, if I’m going to be able to do something or not. So planning ahead isn’t something I usually do. It’s kind of freeing, actually, in a weird way. Live in the moment. Works for me.
I have been having it for while, with the occasional feeling somewhat better. I have figured out that if I take two Aleve around 11pm, I can wake up relatively pain-free and be somewhat functional for the first part of the day. Unfortunately, you cannot take Aleve at will, because it will eat holes in your stomach. Every thing is a trade-off when you are ill. 🙂
Anyway, I made scrambled eggs the other day, and I thought I would run through it for those of you who have never been in constant pain. Imagine you are sitting on the sofa and realize, ‘Oh, some scrambled eggs would go down a treat right about now. Now imagine every one of the following steps involves energy you don’t have and causes you pain. Every movement causes you pain.
First, you get up. Ow ow ow. Take a breather. (this repeats after every step.) Walk to the kitchen. Open the place you keep the skillet. Reach in. Pick up the skillet. Pull skillet out of it’s spot. Lift/move skillet to stove. Turn on stove. Walk to frig. Open frig. Remove eggs and butter. Close frig. Walk to stove. Open butter, open drawer, reach in, pick up and remove knife, close drawer. Cut butter. Move butter you have cut to pan. Open egg carton. Remove eggs. Close carton. Carry carton to frig, open frig, place carton inside, close frig. Walk back to stove. Pick up egg, break egg into pan, carry shells to sink or trash, back to stove, repeat with second egg. Reach for spatula, pick up spatula, move spatula to pan, stir eggs. Reach to burner knobs, turn off burner, Oh, you forgot a plate. Walk to cupboard, open cupboard, reach in, pick up plate, remove plate, close cupboard, walk back to stove. Put plate down, pick up pan, slide eggs onto plate, replace pan or walk to sink and put pan in sink, walk back to stove, open drawer, reach in, remove fork, close drawer, pick up plate and carry it and fork to wherever you are going to sit to eat your eggs. Eat eggs, get up, walk to sink, put plate and fork in sink, walk back to your seat. Sit. Spend a good amount of time recovering from all that effort. Remember, every single move took energy you don’t have, and caused it’s own pain. Every. Single. Move.
This is life with fibromyalgia, and many other chronic pain illnesses as well. Just so you know. When you think of people with invisible illnesses as ‘lazy’ ‘goldbrickers’ ‘good-for-nothings’, remember this. When you tell them to ‘just get over it’, ‘you just need to push yourself’ ‘get outside and Do something’, remember this. It’s easier to disparage people with these illnesses than it is to accept that they are real illnesses and could possibly happen to you, because YOU are not lazy, or goldbricking, or a good-for-nothing. Neither were we. Remember.
Have been in some serious pain since Thursday, so brain is on vacation, just trying to get through the day. I try to just deal with the now, but the now is being same ole same ole, and I want to GET THINGS DONE, darn it. My coping mechanisms are sleep, read if I can concentrate, binge-watch my current show, which right now is Dark Matter. Wil Wheaton. Evil, evil, evil. He does it so well. It’s a ‘dilemma of the week’ type show, but it’s sci-fi, and I have been starving for sci-fi pretty much since the sci-fi channel changed their name and turned into the dreck channel. I miss sci-fi Friday. Still. I seem to moan and groan and complain a lot when I’m in pain, so that’s that for now.
Things gleaned from :https://www.facebook.com/TheMightySite/
and thoughts inspired by them.
This is from https://medlineplus.gov/:
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness.
People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME/CFS may not look ill. However,
People with ME/CFS are not able to function the same way they did before they became ill.
ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.
ME/CFS can last for years and sometimes leads to serious disability.
At least one in four ME/CFS patients is bed- or house-bound for long periods during their illness.”
People would rather go out and have fun instead of sitting around with someone who can’t.
With chronic illness, you are pretty much on your own.
‘Let me know if you need something.’ No. Ask me what I need. Better yet, offer to do something specific. It is very hard to continually be asking, and after awhile, people don’t want to be asked. If someone really matters to you, make that offer to do something specific. Or just call to say ‘hi’. If I ever mention not hearing from someone, they almost invariably say, ‘Well, you could call me.’ No, I can’t. I can’t make the emotional effort most days, I don’t want to be a burden, I don’t want to interrupt your life. I don’t really have a life. I’m just here, so you making the effort to call me, to remember that I’m here, it means everything. People just don’t get this.
Doing small things, like offering to fold laundry, pick up something at the shops, giving a ride to an appointment, taking out the trash. These can be enormously helpful to someone who does not have the energy to do them themselves. Or need what little energy they do have for something else. ‘If I fold the laundry, I will be too exhausted to make something to eat.’ Life with chronic illness is a trade-off. At least when you have any energy at all. ‘If I do this, I won’t be able to do that.’ Of course, there are a lot of days when you are in too much pain or don’t have any energy at all. Someone bringing you some prepared food is a major deal on those days. Very few people ever think to do this, however. Very, very few. Yes, there are meals on wheels. Have YOU ever eaten one? I have. More than one. I’d advise against it.
Dial-A-Ride services. Yes, they are great. The problem, for people with little energy, is that an appointment can take say 90 minutes, including transportation there and back. With something like Dial-A-Ride, it can take three or four hours. You have to be outside to wait for them, and that can be up to half an hour or more. They will get you there sometimes as much as half an hour early. After, you have to call them to pick you up, which involves more waiting, even as much as an hour or more, and sometimes they don’t bother to show up at all and you wind up calling and calling and calling, assuming you have access to a phone. Otherwise, you are well and truly screwed. This has happened to me. Before I had a mobile phone, I have had to walk several blocks up a snowy hill (walking is very painful, as is standing) to find a place with a phone. I have stood in the snow in agony for over an hour, the Dial-A-Ride van passing me several times til finally a driver stopped to ask why I was still there. No one had even sent out a pick-up for me. He had to do all his other calls before getting me home, so it took me three hours to get home after the appointment, and it took well over a month to recover. After that, I just stopped going places. I am fortunate to have a friend now who will drive me to appointments and back, and she is a true treasure.
‘Yes, you’re ill and in pain and exhausted and whatever, but you should still make the effort to reach out and ask for help.’ I find this remark offensive. In an ideal world, maybe you could reach out. But you can’t. You cannot reach out and ask for help, especially if depression is part of what is wrong. What the ill person ‘should’ do and what they ‘can’ do can be complete opposites. Why it’s an offensive remark is, it really just means that you out there don’t have to make any effort, it is left to the ill person to do that. The one who has no mental/physical energy to make any kind of effort. Not the best way to be a friend.
I’m not saying what’s mine and what are paraphrases of other’s thoughts, but a little anger and resentment have found their way into this post. I have been ill for twenty years now, and I have gone through rejection, dismissal, abandonment, you name it. A ‘little’ anger and resentment is nothing. And I am not the only one. People have been abandoned by friends and family, just because through no fault of their own, they have been injured or become ill. Compassion is a trait sadly lacking in my species, it seems. Among other things, but don’t get me started. 🙂
I am usually a calm and serene person, thank you zen.
Gray day today. Rains a bit now and then. Still feeling like crap. Cannot seem to get past it, but I will. I always do. My old therapist said once that fibro waxes and wanes. And it does. Sometimes you’re better, sometimes you’re worse. Makes life interesting. 🙂
My late ex-husband. We had a small backyard telescope, and star charts and you name it. We’d go out and just look at the sky. Comets, too. That was so exciting. Look away a few seconds, look back, and yes, it has moved. How cool. Of course, the mosquitoes just added to the fun. Yep.
Still feeling crap. See the rheumatologist in a couple of weeks, so hopefully he’ll have some suggestions. Riiiiight! LOL
Time to go lie down. Still have the last ep of Dalziel and Pascoe to watch, so may do that. Poor Pascoe. He cannot catch a break. Have to admit, my fav character is Weildy. And he’s gay, and they mention it just in passing here and there, without any kind of negativity. This is late 90’s, early 2000’s. Good for them. Listening to AWOL Nation Radio on Pandora right now. Good get-up-and-move music if only I had the energy. My energy is telling me, “Go lie down before you fall over, you idiot”, and I always listen to my energy if possible. Later, dear readers. OCTOBER!
to give homemaking aide another chance. I like him, the cat likes him, and he is doing a really good job after I show him how to do things. Once I’ve shown him everything, maybe it will go well. Right now I am already exhausted. LOL He is a really nice kid, and I was feeling really bad about possibly getting him fired, so I opted to try some more. I am having a relatively good day, but I am going to need a long lie-down after he leaves.
The Illegal Gardener by Sara Alexi.
Did I write about this before? It is a lovely book. I recommend it highly. Another fav is The Magic Apple Tree by Susan Hill. I have reread this a billion times at least. 🙂 It’s just a nice slice of a life I wouldn’t have minded having.
I think I may have gotten my new homemaker fired. I called to explain why I couldn’t keep him as my person, because I do not have the energy to train him, or go to the laundromat with him to show him how to use the machines. Agency said they gave him three hours training, but apparently none of it was how to do housekeeping, or the fact that he only gets paid for a certain amount of hours. He wanted to stay Monday and do a lot more, but I had to explain to him that his two hours were up and he would not get paid and go home now, please. He is coming for his hour today, and then tomorrow when he goes to the office, I think they will let him go. I feel bad, cause he really is nice and eager to help, but that is not enough. Ah well.
Lovely cool and breezy day. As an October day should be. That hot and sticky is meant for August, not October, Mother Nature. Get with the program, please.
Did I mention that I am binge-watching Dalziel (Dee-el) and Pascoe? Man, that Pascoe is a sourpuss. I think he’s smiled once in the whole five seasons I’ve seen. And the Brits have really strange pronunciations. Featherstonehaugh is pronounced Fanshaw, for example. Weird people, the Brits. Anyway, show is set in Yorkshire. Yesterday, I ordered from Domino’s. First time in years. Got a salad, a pasta dish, and the irresistable chocolate lava cakes. One order, enough food for two days. It was really good. I was surprised. 😉 Later, I was thinking about it to write down that I liked these particular dishes, and the thought popped into my head: “That was right good.” I am assimilating Yorkshire speech? I’ve already been spelling things the British way (behaviour, etc.) from reading so much Torchwood fan fiction written by Brits. Spell check hates me. LOL
Enjoy the autumn, those of you in the Northern Hemisphere. Enjoy the spring, the rest of you. 🙂
Well, there’s my favorite pair of earrings, but the only special meaning they have is that they’re my favorite pair of earrings. And yes they’re cheapos, but doesn’t mean I love them any less. 🙂
I have been having a real problem sleeping, and therefore, pain, pain, pain. Fun times. I am living in the ‘Why, yes, a tornado has gone through here’ stage of housekeeping. I got a new homemaker last week. He goes to college in Providence, which is right down the road from me. He is very nice and eager to help, but unfortunately, he is not from the US and has such a thick accent that I can barely understand him. I don’t think he actually understands me, either. There are some serious issues, as in while he is a trained CNA, I don’t need a CNA, I need someone to shop, do laundry, and clean. He does not seem to have a clue about how to do any of these things. I asked him to unload the dishwasher (and yes it’s weird having a male do your housework), and showed him where the dishes go. He started to take the dishes OUT of the cupboard. What? No. Take the dishes out of the dishwasher and put them INTO the cupboard. Seriously? Shopping was very interesting. First time, he got many wrong things, second time he called me several times, and if I was lucky I would catch a word and figure out what he was asking me, so it went better. I do not always have the energy or a clear enough brain (Brain fog, people. Fibromyalgia comes with lots and lots of brain fog.) to oversee every thing he does, and to have to tell him what to do in the first place. Marie just came and did. And did very well and efficiently. Am going to talk to the service about him tomorrow. He is so nice, but not at all what I need. I feel bad about it, but I am ill, and I need to look after my needs, not his.
It’s October, in case you didn’t know, and I had the air conditioner on yesterday. Hot and very, very humid. Did I mention it is October. Cooler and dryer today, thank goodness. Just took this out my window.
Little Update: Found this on another blog: