Category Archives: CFS Fibro Illness

>Today

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>I actually went out. First time since the Saturday I went to friends’ new house. I really need to get out more. Anyway, walked to post office, sat on a bench for awhile watching the winter-looking clouds go racing by overhead, wind blowing, leaves turning. Glorious, glorious kind of day. I love autumn. Also winter and spring. Summer I would love if it didn’t have those sticky icky days so often. A good day.

I’ve been turning on my full-spectrum overhead lights when I get up, and eating more protein. What a difference. My mood is better, I have energy, I’m just better. Hooray. Should have started with the lights around the middle of September, I think. I’m putting it on my calendar for next year. Enjoy the day, dear readers.

>It’s Raining

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Again. I do love the rain. I decided to add my ‘buck up, sir’ song to the sidebar. It reminds me that I am not a quitter, even though I start circling the black hole now and then.

My friend’s back surgery seemed to go well, and she will be home today. Her hubby has to do the housework for a few weeks. He is not well-trained in housework, but I say, so long as it gets done, it doesn’t have to be perfect. Or maybe it’s Flylady who says that.

I have been getting annoying calls several times a day for the past several days. Unknown name and number. If I let it go to machine, it cuts off as soon as machine picks up. If I brave it and answer, same thing happens. It starts around 8:45 am, which is practically the middle of my night, so my only alternative is to turn off the ringer and let the machine pick up all the time. Or just get up at 8:45 am. Nooooooooooooo!!!! I am NOT a morning person, nor have I ever been. It’s only gotten worse since I got fibro/cfs.

I seem to have lost my three whole followers on here. Whether it’s because they disagree with my take on things, or a glitch with Blogger, I guess time will tell. Such is the way of things, right?

My friend being out of commission for so long has made me face up to how dependent I have become. I knew it, of course, but kept it in the place I put things I don’t want to think about. So I have determined to at least attempt some independence. After the bad experiences I had before I gave up going out alone, it is a somewhat scary prospect, especially if I don’t have a back-up person I can call if I get into trouble. Fortunately I know someone who has offered to be that person for now, so I just have to get my courage up and take a lot of pain pills on the day. I’ll let you know how it goes, IF it goes.

EDIT: My followers are back. Must have been a glitch. I’m glad they’re back.

>It Is Self-Pitying Rant Day

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>At the old homestead. It is gray and cool, with a north breeze coming in my windows. Not ranting about that. Ranting about the darn CFS, life in general, feeling like crap stuff.

Slept ten or eleven hours last night, in a daze this afternoon, with not enough energy to scramble an egg to eat for….what’s a good word for breakfast eaten at 2pm? Too late to be called brunch. I know I should eat after I get up, but I’m usually too foggy to even decide what to eat, let along dump the cereal in the bowl and pour on the milk once I decide to fall back on that bowl of cereal, as usual. Some really healthy but yucky stuff Amazon mistakenly sent me instead of what I wanted. Twice. Twelve boxes of yucky but healthy. Oh, joy.

I’ve been more ill than usual since my day out, so the house is a mess, the guys are coming sometime starting Friday to prep the central heating for winter. I’ve lost my friend Jukka yet again, my friend Tess has been incapacitated with a bad back for weeks, and my friends Beth and John are moving an hour away. Woe is me.

Whine, whine, whine, along with a good dose of moan and groan thrown in. It is what it is, right? I just have to get through it. Rats. Feeling sad.

>More Things

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>Recovered from my day out, then bit by the CFS bug again, sleeping, being awake for a couple of hours, more sleeping, awake a couple of hours, for almost two days. Not sure if it’s done. Last time this happened, it lasted for six weeks. Not a good thing.

The other Thing: If you at all remember the Fells Acres case, this will be relevant. Even if you don’t, this is very interesting and disturbing. It touches on something I’ve addressed here before: the lack of critical thinking and how people can so easily believe things that are clearly not true. The writer addresses this briefly, and helps with understanding self-delusion in a way. I think it gives me more hope for this country to understand that people can convince themselves of anything, rather than that they are just plain idiots. Not sure about that, though. Do you have to be an idiot to be able to convince yourselves of things that are clearly not true? Have I convinced myself of things that are clearly not true, and just don’t realize it? God, I hope not. Like most people, I like to think that “I’m good enough, I’m smart enough, and dog-gone it, people like me.” (Al Franken) How can I be sure. How can anyone be sure of anything?

I find this very confusing, and somewhat frightening. I have to fall back on this saying of the Buddha: Believe nothing, no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and your own common sense.
Here’s the article:

http://www.salon.com/life/excerpt/2010/09/20/my_lie_maran

And another:

http://www.salon.com/books/memoirs/index.html?story=/books/int/2010/09/20/meredith_maran_my_lie_interview

>Two Things

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>First, I am finally recovered from last Saturday’s outing. Walking like a regular human, or one with fibro, anyway. Still basking in the memory of such a fun, gorgeous day, too. It was worth the recovery time needed to have such a day. I will always choose fun if I am at all functional. Life is too darn short to spend it being miserable and angsting over what I can’t do. I choose to enjoy what I can do, when I can do it, and just bide my time through the rest.

Second. This video. It’s good advice for any kid, not just those who are gay. Watch it and see how good the advice is.

>A Special Day or Two

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>Yesterday was a very good day. Went with my friends to see their new house, went to the local winery, the local brewery, the beach, to dinner, and home. Lovely day. The water was calm and peaceful, the weather perfect, not hot or cold, big clouds in the sky but lots of blue as well. Today is a recovery day, since I am relatively immobile after yesterday, but it was so worth it. I have the best friends ever, and not just the two from yesterday.

The second special day:

Today be ‘Talk Like A Pirate Day’. Who Knew? They even wrote a song about it.

http://www.tomsmithonline.com/freestuff/oddio/TLAPD-Streaming064.mp3

Here be th’ lyrics:

http://www.tomsmithonline.com/lyrics/tlapd.htm

Me pirate name is a couple of posts down.

>My Life Today

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>So. I was up for a day and a half and then slept all day yesterday til 5:30pm. So I’ve been up all night again. I have an appointment here any minute (when she gets here) or else I’d probably be on the couch.

I closed the bedroom door to keep the cat in here, because she hides under the bed all day and what’s the point of having a cat if she’s going to be invisible? She comes out at night when I go to bed so she can walk around and over me many times til she’s ready to settle (HA!) and sleep next to me. For five minutes. Then she has to change position several times, change sides several times, get up and eat something, come back and walk over me to get to her preferred side. Is it any wonder I don’t get a lot of sleep? LOL Right now she is hiding under the shelves where I keep the computer paper and discs and such. Okay, that’s it. Can you tell I’ve been up all night? LOL

>Beautiful Day

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>I had three good days in a row, got tons done, then two not-so-great days, then another good day today. Went out with a friend to Lowe’s, and a local salvage? store, and Border’s for cappuccino. It was gorgeous outside. Not even jacket weather. I didn’t take all my vitamins today, or have my yogurt with protein powder, so it will be interesting to see how I am tomorrow. The not great days I had weren’t really due to the illness, so I still think the vitamins and powder are making a difference in how I feel. More energy, less pain. It’s a good thing.

Here’s another reason to love the internet. I’m just posting the addy instead of the vid, because there are some interesting-looking vids in the sidebar, as well.

http://www.youtube.com/watch?v=kkGeOWYOFoA&feature=player_embedded

Happy spring, everyone.

>Another Good Day

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Yesterday, I woke up at 8am, after sleeping really well. I set up Workrave on the pc, and every 45 minutes I got up and did something around the house. Put away laundry, washed/rinsed some items in the tub, cleaned the frig, organized some in the kitchen…there was more, but I forget. Today I was up at 6am, after not sleeping well, but not a zombie per usual when I don’t get enough sleep. I cooked breakfast, cleaned and reorganized the freezer, did some more organizing in the kitchen, and it’s only 1pm. I’ll probably crash later. I am still pretty tired. but it’s the second good day in a row. Windows open both days, too, as spring certainly seems to have sprung. That’s not to say we couldn’t have a snowstorm next week, it is New England after all, but I will enjoy that as much as I’m enjoying the lovely weather today.

Planning to watch Desperate Housewives tonight. First time this season, but Barrowman is on, and I just want to check him out as NOT Captain Jack. I’m still angry about the wholesale destruction of Torchwood by that rat RTD, but it’s not Barrowman’s fault. I read that if the American Torchwood does get made, they are going to un-gay Captain Jack. God, we are a bunch of backward puritans in this country. (Please, God, don’t let me get religion.) I’m not going to watch it anyway. First, it’s Fox, and we know their track-record for sci-fi shows. Second, I have vowed NOT to watch anything RTD is associated with. My own person(al Proof-reading. It’s a good thing.)boycott. Silly, maybe. But it makes me feel better. Happy Spring, everybody!

Update. Friend came over and we went to the local plant nursery. I got a lemon verbena and a purple sage plant. Lemon verbena smells soooo nice. I used to grow it in my garden. I would have gotten more plants, but Gertrude would eat them, so no point. Gorgeous day out.

>Google

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>DD#2 doesn’t trust Google. I have, as a general rule. Came across this today:

http://vimeo.com/moogaloop.swf?clip_id=9925756&server=vimeo.com&show_title=1&show_byline=1&show_portrait=1&color=&fullscreen=1

THE BEAST FILE: GOOGLE (‘HUNGRY BEAST’, ABC TV) from Hungry Beast on Vimeo.

I like Gmail, Greader, Gcal, Picasa. Should I be worried? Seriously, I don’t think so.

On the illness front, things have been better. Having a constant headache, sleep is messed up again. Today I got up at 12:30 pm. Yesterday I got up at 9pm and the day before at 8pm. I don’t work nights. I don’t need to be awake all night and sleep all day, but my body just seems to work that way. I’m tireder in general all the time, and having more pain as well. I wish someone would come up with a way out of this mess that is fibro/cfs. It’s getting me down again.

>Tired of Feeling Tired

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>It’s been a week, and I’m still feeling tired and miserable. I am so over this. A positive thing though, is that I have spent the week just sleeping or vegging on the couch, only doing what I felt up to doing, which was mainly finding something to eat. The positive thing is that I realize how fortunate I am to be able to do this. My biggest responsibility is taking care of the cat. If the house is messy and there are no regular meals, no one cares but me. So I can indulge myself when I feel this bad. Lots of people still have family to take care of, jobs to go to if they are able, responsibilities to fulfill. If I’m going to feel this bad for this long, how would I manage? I have actually felt this bad and much worse for much longer sometimes, too. About three years ago, I think, I had a six week period where I could barely stay awake for two hours at a time. Sometimes I think how lovely it would be if I had somebody to take care of me. But I was always the caretaker, and now there’s no one around to take care of me. Besides, I’m probably not that easy to live with anyway. *grin*.

>Spring is Sprung?

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>We’ve had several days of gloriously beautiful warm and spring-ish weather. I of course have felt like crap for most of them. Have I done something to offend Mother Nature? Gee, I hope not. I can’t believe we change the clocks this weekend….so early? Why don’t they just leave it changed all year, or just leave time alone. Time change is much harder on people who are ill, especially the spring change. It must be like jet lag…it’s not as bad going east to west as it is west to east, or the other way around. I don’t fly, so I’m not sure which is the correct one. Anyway, I wish they’d just cut it out.

DD the eldest wants to give me a long-distance ‘light’ treatment in the next couple of days. She recently discovered that she seems to have some kind of ability to make someone’s pain better but isn’t sure how it works. Anyway, for my treatment, she will send vibes and I sit and see if I feel anything, seems to be the gist. Normally, I would laugh this off as that crazy stuff some people are into, but I had cranio-sacral therapy once, and it was interesting, to say the least. I had not heard of it before (kind of like I never heard of fibro til I was diagnosed with it) so I had no pre-conceived idea of what was supposed to happen. I was in for my regular physical therapy and the person said she was going to try this. She put one hand under my back, one above my stomach, neither hand touching me. I felt energy passing through me from one hand to the other. She did this a few minutes, then told me to gently sit up, which I did. It almost felt like I was out of body and had to sit til I merged with myself again. It was pleasant, not scary or painful or anything, but really strange. I never had the therapy again, and it had no lasting effect, but it was a kind of eye-opening experience. Things that sound stupid sometimes actually aren’t. I’m not the tarot-card, psychic-visiting, metaphysical type, but it does make you wonder. I’ll post what I get out of the ‘light’ treatment, if anything. I do try to be open-minded and not just dismiss things out of hand, so I’m willing to give it a try. Besides, it can’t hurt, right?

>Updates on Illness-What Fun

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>Last week I was in a funk and completely unmotivated. Then Monday and Tuesday I was on a roll, following my plan successfully. Got up, had orange juice, ellipsed, breakfast, get ready for the day, make coffee and go outside for a bit. Actually, Monday, my friend came over and we went out, so that counted as my outside for the day. Tuesday, I even cooked dinner…a real dinner of fish topped with crumbs and mushrooms, and baked potato. Ran the dishwasher. So much energy. But at the same time, I was exhausted physically. Not sure how to explain how I can have enough energy to chop veg and cook and clean up and at the same time be physically exhausted, but that’s how it is sometimes. Exhaustion causes glitches and brain-fog. Turned on the wrong burner and didn’t realize until the tea kettle was out of water and turning black on the bottom. Flipped a knife onto the couch when I sat down to eat, poorly placed the laptop on the couch to make room on the tray for my dinner and the laptop slid onto the floor right on the side where the power cord connects. Oh, gee, I killed my laptop, after I just started using it again. This is that fibro-fog that causes you to put your glasses in the freezer and the milk in the cupboard. The brain just does not work. When this happens, rest is the only solution. Real rest, lying down with eyes closed. Or a real night’s sleep, the kind that is so rare with fibro/CFS.

So my plan lasted two days in a row. Almost a record for me. One day in a row is usual, but I have had maybe three at some point. By Wednesday, the exhaustion had caught up with me and I was totally useless…barely functional. The rest of the week I have been sleeping way more than usual, or being awake all night. I’d really love it if I could have some semblance of normalcy, normalcy being where I can follow my plan on a regular basis, sleep at night and be awake during the day. But it’s been eleven years since the illness really took hold, so I’m not hoping for normalcy to make a comeback any time soon. I’d really like to get outside every morning, in hope of setting my internal clock to a normal day/night configuration, but boy is that ever hard to accomplish. I’m so foggy in the morning, or whenever I wake up, that usually I get the coffee made and sit in front of the computer. both things that take minimal effort on my part. I’ve also had a headache for the past few days. Does all this count as whining, or just updating my situation? You decide, dear readers. LOL

On the other hand, spring is springing. It’s supposed to be in the fifties the next few days, and sunny. Sunny is good.

>Good Morning, Internet

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This is a Boston webcam. Actually, I think it’s Hull, but I’m not sure. It’s from a few days ago.

Here’s one from today that actually shows Boston. It’s supposed to snow tonight, maybe.

I am having yet another foggy day. In a daze. Days in a daze. LOL But otherwise good. Interesting. I remember this from before. I would have either pain or fatigue and fog, but not both together. Then things got weird with more zoloft. I am remembering what I was like when I first got this fibro/cfs thing. It’s doable. I can cope with this, so far anyway. Daze can be fun. Sort of.

Went out yesterday with a friend. It was a gorgeous spring-like day. No coat necessary. We shopped, had a cappuccino at Borders, and went for a little ride. I never get to go for rides anymore…you know, just pile in the car and take off with no destination in mind….so it was very pleasant. Homemaker comes today, so that will be fun, too. Have a lovely day, everyone. Or night, depending on where you are.

>The Best Thing on TV

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Mythbusters.

http://dsc.discovery.com/videos/mythbusters-dimpled-car-minimyth.html

I don’t have a car, but if I did…..

It’s very cold here, but slowly warming. Up to 25 from 18 degrees fahrenheit earlier. I have been having more pain the past several days, so much so that yesterday I vegged on the couch instead of here at the desk. My homemaker came and the first thing she said upon walking in was, “Why are you there(on the couch)? Is everything okay?”, which tells me I spend waaaay too much time on the computer. LOL It was pretty funny.

I’ve also been sneezing and sneezing and sneezing since the super fixed the ceiling and caulked the window. Allergic to something, I am. Living on allergy pills. Not fun. but it is a beautiful sunny day, so I am enjoying that. The inspector came to check that the ceiling was fixed, and I had two deliveries from Amazon. Good thing I was up and dressed early (for me) today. I am trying the Amazon subscription service for the first time. I ordered a few things like baby wipes and I’ve forgotten what else that I use on a regular basis but can’t always get to the proper store to purchase. So we’ll see if it actually is cheaper and more convenient. Don’t know til I try. You schedule delivery for whatever time period you want, like twice a year for the wipes. They are great for cleaning up after a spill or just making the bathroom look neater. Whatever. Time for lunch.

>!!!!!!!!!!!!!!

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>I direct you to this blog, by Elizabeth of Ontario. I wish to point out the picture in the post named “Anguish”. Here is how I feel. Here is my deepest self. Here is the anguish of illness. Made visible for all to see. Elizabeth, whom I only know through blogging comments, is a remarkable woman, it seems. Please view her blog.

http://fibromyalgia-art.blogspot.com/

And her other blog:

http://asofawithaview.blogspot.com/

>Warmth

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>The super came today and caulked around my windows. No more freezing. I love my super. LOL

Having a very good spell lately. I’ve cooked here and there, kept things tidy, decluttered a bit more, and gone out shopping with a friend. It’s gotten really, really cold now, so I think I won’t be going out again for a bit. It’s 12 degrees right now. Twelve. Degrees. Fahrenheit. Oy.

I was just watching the vid in my December 8 post. God, I love being a geek. I love all the science stuff, I love Doctor Who, whose theme is in the vid around the seven minute mark. I love my computer, where I find all this cool geeky stuff.

Here’s something geeky now:

>Not The Greatest Picture Ever

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Even though I was tired and pained and foggy when I got up, I managed to get some actual work done today. A bit at a time. I cleaned around the windows, since the super is coming tomorrow to see about caulking them so I don’t freeze to death; I cleared out under the sink, put in some nice plastic-y shelf lining, and rearranged my tools and cleaning stuff under there; took out the stove drawer to retrieve my favorite skillet that had slipped behind, vacuumed there, finding also two cat toys, put the drawer back by myself, which I couldn’t do last time, and rearranged the skillet and baking pans; moved the box of videos away from the window where it was resting while I figure out where to put them; and I guess that’s about it. Had leftover Chinese food for breakfast and dinner. I do love leftover Chinese food. So all-in-all, I would say it was a good day, and I am happy.

>Internet Friends

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Found this in an old post of a blog I’m checking out:

“If there are one or more people on your friends list who make your world a better place just because they exist, and who you would not have met (in real life or not) without the internet, then post this same sentence in your journal. There are too many to list; you know who you are.”

And from a reply to that post:

“……….But you know, everyone can’t live right next to me. Kindred spirits are friends no matter where they live geographically. The internets are just another way to bring us together.”

Having met one of my closest (in real life) friends through the internet, and one or two really special people who are/were strictly internet friends, I can say that having the internet has made my life that much richer and more fun. It also lets me keep in touch with people I love in real life, but who don’t live close enough for day-to-day interaction. What do you think, readers? Has the internet enriched your life, or no?

>Yesterday (and Today)

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>Was a good day. Went out with a friend. It was beautiful…cold, sunny, a nice winter day. Got a new thumbdrive, since I lost my old one.

It was the second day IN A ROW that I woke up with no pain and in a great mood. So I was very happy all day. Two days in a row is unusual lately. I was very silly all day, because I like silly, and I don’t care if people think I’m crazy. Well, I am crazy, so what does it matter what they think?

My apartment failed the inspection because of a patch in the bedroom ceiling that hasn’t been painted since the air conditioner leaked there a few years ago. The inspector sees it every time he comes, so why did he fail it this time? That means I have to be cognizant and presentable for the super to come paint it, then I have to be cognizant and presentable for the inspector’s return visit. I hate HAVING to be cognizant and presentable, because if my brain isn’t working well, it’s very, very difficult to achieve both those things at the same time. Having a chronic, debilitating illness, while fun to say, is a pain in the butt sometimes.

Put in two new videos. Check them out. Does anyone remember those old John Cameron Swazey Timex ads?

I’ve been updating some things on the pc recently. I had done IE8 awhle ago. I hate IE8 and all the previous versions and only use it if whatever I want to do absolutely, positively refuses to work in Firefox, so it’s really not that important. I also just downloaded SP3 a few days ago, after waiting til they got the bugs out, she said in hopes that they did. I did notice an immediate upgrade in how fast things load, especially IE8, which was interminably slow to load before. Today I downloaded the latest Firefox version. I haven’t been happy with the recent ones, so was still using 3.0.10. I hope this version does what I want it to. I save my install files in a folder, so I can uninstall this and go back if I don’t like it. One thing I’ve been having a problem with is when I try to do ‘sort by name’ in my bookmarks, it freezes things up, so I have been doing the sorting manually. Good old drag and drop in the ‘All-in-One-Sidebar’ extension, which is one of my favorites. Oh, the reason I upgraded FF is because none of my Stylish styles are working. The Stylish icon in the status bar stays blank, but right-clicking shows that the styles are there and should be working. Haven’t downloaded them back yet, so we’ll see if it’s fixed. I’ll keep you posted, readers.