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: