Category Archives: CFS Fibro Illness

>Blog Layout

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I finally figured out where to change the width. Outer-wrapper in the ‘edit html’ window. Yay, me.

Finally up at a decent hour, 9am. It is snowing and everything is coated in white. Very pretty, but my weather update tells me it’s going to change to rain soon. It’s 33 degrees farenheit. Ice, anyone?

Feeling good today. Woke up in a good mood and not in pain. First time since a week and a half ago, when I had a really good Sunday. Was feeling kind of sad before yesterday, and I realized that the more people I actually know in real life read my blog, the more reluctant I am to get into my feelings. I think it’s because I don’t want anyone to feel sorry for me, or think they need to ‘fix’ me, or do anything at all, actually, except maybe give me an encouraging word. So I am going to try to ignore that reluctance, because it kind of defeats the purpose of the blog.

So day before yesterday, after a week of feeling lousy and missing the Thanksgiving celebration, I was not in the best frame of mind anyway, and then suddenly I realized that the black hole was circling. Kind of scary, except that I can be aware of it now, and not just let it happen. Then yesterday I had a foggy but fun time when my homemaker was here. Set up an email address for her. I think she may be the last person left who didn’t have one. Talked and laughed while she worked. Helped. A lot. So today….good mood, feeling better. Life is good.

>This Post Is For You, Peter

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But first, how can you not love science?

http://www.boingboing.net/2009/12/05/saturday-morning-sci-8.html

Today was the day I was going to friend’s house to celebrate a belated Thanksgiving. Of course, I woke up feeling like a truck had run over me, and went back to sleep for several hours of blocking out the misery. Friend called, I had to decline going, got up, felt sorry for miserable self, ate oatmeal, vegged on sofa looking for something…anything, worth watching on tv. Got tired of self-pity, called friend to say hi to all, and what does she do but put me on the phone with my favorite person on the planet, Peter, her son-in-law. Lovely, lovely chat thank you very much, Peter. Body doesn’t feel any better, but psyche is psyched.

Bonus for today. It snowed! I love snow. I love, love, love snow. So it turned out to be a good day after all. They all do, one way or another. Life is good.

>Not My Best Day

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>It might snow tomorrow. It was 65 degrees yesterday. I love New England.

Didn’t feel that great today, and had to go back to bed and get some more sleep. Better now. Been trying to set up a router and make a home network, but every time I try I just lose my internet connection and the thing doesn’t link up anyway. Frustrating. Need to have a less brain-foggy day to do this. Or actually read up on how to do it. I followed the directions that came with the router, what more do they want? It’s only a cheapo from Walmart, so maybe expecting it to work is asking too much? LOL

I am getting some of the decluttering done, and being happier with my space. It’s actually pleasant to wake up in my bedroom, with the old I don’t know what it’s called. It’s a big bowl sort of thing I put flowers in. Not a vase, but I can’t think of the correct word. Anyway, I bought it in a junk shope (okay, so I can’t spell. SHOP) a long time ago for ten dollars, and it is really beautiful and I put fake flowers in it. It’s nice. Hey, I can take a picture? BRB

Okay, here’s my kitchen.

Here’s the flowers in the bedroom.

That’s Gertrude’s ‘cave’ showing under the table. I’m not a very good photographer, but you get the idea? I have half-curtains in the bedroom windows, because I like to see out. I close the bigger black-out drapes when it’s really cold out. Once I got up in the wee hours to go across the street to the park and watch a meteor shower. I live in a very safe town, so no problem there, except I got cold. Back in bed, looked up and saw meteors flying by from South to North, which it the way my windows all face. Now that was pretty darn cool.

Remembered the word: jardiniere. Bowl-shaped vase, sometimes with a stand.

>The Delivery

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It came. At 8:30 am. Woken out of a sound sleep by the buzzer. Been sitting here at computer ever since. It’s 11am. Trying to get my brain to kick in, but it’s not happening. Too fogged even to go make coffee til now. It was FedEx. UPS never comes in the morning. Mailman, either. All my plans for the day are now questionable. If I can’t get it together, I will have to go back to bed and sleep some more. Then I’ll be awake half the night or more. At least it’s not so dark out today. I actually see a bit of blue sky. Okay, folks. Whine over.

BTW, hated the green, changed it back. Obviously. Grumble, grumble, grumble. Whine really over now. I hope.

>Well, Darn

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I was so planning to get to bed early tonight so I could start fresh tomorrow with a PLAN, but here I am still up at 1am. Wanted to get something done tomorrow, after spending the last several days in a funk, still wearing my pajamas all day. My life needs structure. I can’t seem to DO structure. Structure means pressure. Pressure to be up by a certain time, to be in bed by a certain time. I am not good at that. Pressure makes me nervous. Keeps me awake. Causes anxiety, really. Life is so much easier if I just play on the computer and not think about anything. Thinking is pressure. Pressure is not good. Not at all. So I avoid it if at all possible.

I changed the videos. Not just music this time, but still good. I hope.

>A Good Day

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>This picture is definitely not me, but I am having a good day. Slept well, woke up in a great mood. Doing actual household stuff in between sitting here playing on computer. Rearranging bedroom. Have to do this stuff on a good day, because otherwise it will never get done. So it’s worth it even if it means recovery days will follow. That was it. Just a quick update.

>Post From Another Blog

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>Here’s a post from a blog I read regularly. It deal with an issue I’ve talked about here before, and am still trying to come to terms with: I am not that me anymore. It hurts, but this post helps.

http://chronicallyme.wordpress.com/2009/11/20/clutter-busting-of-self-image/

>McGee is The MAN

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It was pretty cool. I love shout-outs to the fans, like Nathan, Firefly, Castle. If only RTD cared about his audience as much. We can’t have everything, I guess. But here’s the bit:

Feeling weak and shaky again today. This has happened before, and I just view it as a temporary relapse. I will feel better. Say it fifty times and maybe it will happen. Mind over body. Does that really work?

>Stephen Colbert Clip

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A very funny guy. This plays automatically, so be prepared:

http://www.colbertnation.com/the-colbert-report-videos/256012/november-16-2009/the-word—skeletons-in-the-closet

On the illness front, spent most of yesterday sleeping off pain. Better today, but in general feel like crap. I was doing well for awhile. It was nice. I will do better again, I always do.

>Recovery

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>Not getting into it, but I love this protest.

Been having lots of leg pain since going out the other day. Limping around with the ow! ow! ow! going on. Not sure what to do about the getting less mobile as time goes on. I have tried to do more walking or other exercise at different times, but it only seems to make things worse. It’s the old catch-22. If I don’t exercise, my muscles get weak and thus it is harder to move. If I exercise, my muscles stay weak and I have a lot more pain. How does one fix that? I’d like to try some totally off-the-wall, guaranteed-to-cure-what-ails-you diet, but they all require preparing food for cooking and then cooking it. I don’t have that kind of energy, most days. Is there a catch-99, cause I think I’m in it. If I was rich, I’d hire my own private chef, but since I’m not Oprah, and don’t care to be, I guess that’s not in the cards.

I did clean out my Aerogarden today, and ditched the basils, which had sort of gone by the by. I’m trying to salvage a bit of each, but don’t know if they will take root or not. I put a couple of the smallest tomato plants in three of the slots, so maybe they’ll actually grow. They are not doing at all well in the pot, but I left the rest in there anyway. The things that have done the best, probably because I didn’t trim back the others as well as I should have, are the parsley, the thyme, and the mint. I also moved the whole shebang onto the tiny counter by the far side of the stove, and put the new toaster oven in it’s place. Love my toaster oven. It actually makes real toast, not warm bread, or burnt bread. I’ve cooked some bacon in it, too, and it’s fast and does a great job. I’m going to try baking something in it, as soon as I get up the energy to bake something in it. It was 30 dollars in Walmart, and well worth it.

This is the Neilsen book week, started Thursday, and so far I’ve only watched about three hours of tv, one of them On Demand. There’s no place to write On Demand viewing, so I just put it in a regular slot but said it was OD. Will they care? Do I? You can comment in the back, so I said I prefer On Demand or Hulu because I get too annoyed with the incessant commercial breaks to watch regular tv much. I don’t think they’ll care about that, either. Nobody wants to hear my opinions on these things. I do not understand why. No, no I don’t. That’s all, folks.

>Invisibility

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>A comment from this excellent post on invisibility:

http://disabledfeminists.com/2009/10/20/what-can-i-do/#comment-537

“I was so grateful when I got my cane, because it gave me an excuse to ask for seats on the bus, or first dibs on the elevator. (Though, my school keeps its elevators accessible by making sure they’re slow, small, smell of pee, and placed where no one not following the tiny wheelchair signs will find them.) I also found that my anxiety had a lot to do about it, since I have social anxiety–on days when I had more mental spoons, I had the resources to just stand still on the escalator and put up with everyone else’s angry glares. When I didn’t have the spoons I wanted to apologize for sharing anybody’s air, and was willing to walk and take the stairs the long way round, just so I didn’t “inconvenience” anyone.”

I like the idea of ‘mental spoons’, since I also have social anxiety. Some days I am up for going across the street to the convenience store by myself, and some days I cannot muster the courage. Thinking of it in the ‘spoons’ metaphor I think will help me come to terms better each time this comes up.

>Lovely Day

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>I got some tidying up done, and my friend Tess brought some groceries I had asked her to get for me. Then we played games on here for a bit. Fun. We always get hysterical with laughter when we play pc games. Especially Big Kahuna, the word game. It’s my fav.

Wondering what my life would be like if I felt even this good on a daily basis. I still tire easily, and have some pain, but I am pretty functional. I could actually cook, and even go out to the library or something. Do more decluttering around here, too. It’s amazing how backed up everything gets when you are not well. If you have family, they can pitch in with the tidying up and keeping things running well, but when it’s just you and the cat, dishes pile up, mail piles up (got my mail, finally), everything gets messy. Then your feeling better time has to be spent clearing up all the things you couldn’t do because you were feeling crappy. Feeling good times should be reserved for fun. Fun is very, very important in life. Even when you feel crappy, fun makes you feel that little bit better. I read fun blogs like the LOL stuff and Cute Overload because they make me smile, and quite often make me laugh out loud.

I wonder if anyone else out there is dealing with chronic illness on your own, and how you manage life. I like living alone, and not being responsible for anyone but myself and the cat, but sometimes it would be so nice to have someone who would cook a meal, or clean up the kitchen, or even make a cup of tea for me. What do you think, readers?

>Much Better

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I am. Much better today. Slept well, feel pretty good. It’s a gorgeous fall day, too. Sunshine, breezy, comfortable. I have showered, but I need to get dressed so I can go down and get my mail. Last time I got it was last Monday, over a week ago. I’m sure the mailman is not happy with me.

I found this program on tv the other day about a food challenge in Canada. It was to only eat items produced within one hundred miles of where you live, for one hundred days. Not so simple as you might think. No sugar or coffee or salt or pepper or any spices. A long list of things we take for granted. It really got me thinking about how we live. My first thought was what if it was winter? I live in New England, and there isn’t a lot in season in winter. You’d have to live more like our ancestors, learning how to preserve food. How would you do that? Canning, root cellars. No brining, because no salt. I think this would be really hard for anyone, but for someone with a chronic illness, the work involved would make it impossible. How fortunate we are to live in a time where food is easily available in pretty much ready-to-eat forms year round. I could not survive otherwise, since I live by myself and cannot afford a private chef.

That’s something I’ve learned since becoming ill. Not to take so much for granted, because I can’t. You have to be healthy to grow your own food, prepare your own food, raise your own animals, all the things people had to do not that long ago. Illness makes you count your blessings. I know some people spend their time bemoaning the fact that they can’t be their pre-illness selves, and trying to find something to fix them. I do that, too, sometimes. But I prefer to learn the lessons of illness. Appreciating what I can do, what is available to help me survive with illness, friends who are willing to help out with the really hard stuff. I think I have a wonderful life, even though it isn’t the life I thought it would be, or the life I used to have. It is still a good life, with friends and fun and lots to be grateful for. Like Jack and Ianto. *smile*

>I Seem to Be Sick

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I never get sick, but last Monday a friend came over and she was coming down with a cold and I must have gotten it. I don’t have cold symptoms, though. I just feel worse than normal. Does a cold or similar illness manifest as a fibro flare instead of the actual cold symptoms? I haven’t had a fever, although I did have a brief ‘sweat’ thing yesterday, for no reason I could see. I’ve been spending most of my time on the couch or sitting here. I’m thinking maybe I DO get sick, but it causes increased fibro symptoms in lieu of what ‘normal’ people get when they are sick. I am puzzled and confused. Maybe what I think are flares are really that I’ve caught something and don’t know it. Or maybe this doesn’t make any sense at all and I should just go to bed. I love this snap of Ianto, btw. “He always cheats.” I snagged it off a fanvid.

>Hmmmm

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>Too late. Someone twittered the crazy post. I’m going to put it back, I guess. As soon as I figure out how. Just remember, much better now. Thanks. *smile*

Well, I would have put it back, but I saved it on Evernote, and Evernote has let me down. It’s not there. I was pretty much just feeling really down, and relating it to my obsession with Torchwood. Depression grabs me sometimes, but after a few days, it lets go again. Torchwood made me sad because I was relating to Ianto and I felt he was never really sure he was loved or that he mattered, and I’ve had that in my life. Then I described my feelings about my life since my husband left, even before I got sick. It’s like I’ve fallen through the Rift, and I’m drifting around in this limbo without knowing where I am, where I’ve been, where I’m going, how to get home. But my home, and the life that I had then, no longer exist, so there’s nothing to get back to. Like this is not my real life, and I am just in that limbo waiting. For what, I don’t know. For my life to somehow come back. I feel like nothing I say or think or feel or do, or how I feel with being ill, matters. Nothing has any meaning because I have fallen through the Rift and this is not my life. It’s not as crazy-sounding as it was when I originally posted it, cause I was feeling really, really sad and it definitely came through in the post. I miss Ianto, even though he was never real. Have I mentioned that I’m crazy? *smile*

Gee, people, if you’re going to twitter me, couldn’t you leave a little comment here, as well. Did you twitter because I was fascinating? Because I sound like an idiot? Because I talk about Torchwood? I’d like to know. Sometimes I think I might as well write on iDaily Diary on my laptop, which isn’t connected to the internet. Complain, complain, complain. That’s all I seem to be doing. But I really am better. I’d just really like to hear from someone out there. Oh, well.

>Flu Vaccination and Fibro/CFS

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>Here’s a link to a post from a blog I read regularly. I never get a flu shot, and I had flu way back in the late 50’s-early 60’s and I read somewhere (this link?) that I may be immune because of it. I am careful with handwashing, etc., and would rather not expose myself to something that may cause serious consequences. Anyone remember the last swine flu vaccine debacle? How do you all feel about this? Here’s the link:

http://www.fightingfatigue.org/?p=7721

>It was a good day

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>In spite of not sleeping well because of leg pain and restless legs acting up, I was up at 9am. but the best part is that I ate well all day. Started with coffee, then oatmeal. Lunch was a Kashi frozen lasagna-type thing, then I had fage with a bit of maple syrup for snack, scrambled eggs with cheese for dinner, and now I’m having some whole grain toast. Oh, and I had a root beer float after lunch. I don’t usually eat this much in a day, but what I do eat is not as healthy, so I am pleased.

Tonight I watched ‘Live Free or Die Hard’, an impossible-to-believe movie in which any normal person would have been dead after the first half hour, but hey, it’s Bruce. I only watched it cause it has Justin Long, who I like. He used to be on Ed, and I remember thinking he was going to be a big deal. He held his own with Mr. Willis, I thought. He was great in ‘Galaxy Quest’, too, even though his role wasn’t that big. I love that movie and watch whenever it’s on. Even with commercials.

Tomorrow is tech support day. I’m going to my friend Tess’s house to work on her pc. That will be fun. We do tend to get hysterical with laughter a lot.

Hoping for a good night with actual sleeping going on. I’ll let you know.

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>It’s feeling very autumnish. My favorite season. I am better today. Yesterday I was very, very tired and fell asleep on the couch in the afternoon. But my new homemaker came yesterday, and she is fantastic. I really like her and she does a very good job of cleaning.

Last night I had an ‘I need my tech person’ call from my friend Tess. She inadvertently downloaded a baaad fake Windows Defender look alike and it sort of high-jacked her pc. Couldn’t really help over the phone, so over to her house for awhile trying to fix it. She has AOL. NEVER use AOL. That is the true pc hijacker. It would not allow us to do anything. It just kept on popping up and getting in the way. What a nuisance that program is. Anyway, finally had her just shut it all down, disconnect from the modem and unplug. She is busy today and tomorrow, but Friday we will try to use the fix we found when we googled back here at my house. The moral is….never click on a popup unless you are absolutely positive you know what it is. It looked like Defender and she thought it was an update, so ran it. Oops.

I also am going to try using gmail to import her aol mail so she can then delete it forever…..AOL, not her mail. *grin*. I really enjoy fiddling with things on the pc and trying to fix, make it work, whatever. I like to download new things to try, too.

Did not sleep well because in spite of two ibuprofen, my legs hurt all night. Just a little fibro update here, folks.

>More with the fibro

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>I am feeling lousy again. Could sleep all the time if I let myself. But today the new homemaker starts, so I am up and showered. I had a bowl of grapenuts and immediately felt worse, which doesn’t usually happen, IIRC, so not sure what that’s about. It’s lovely weather, though. There’s always something positive going on, isn’t there? Off to get dressed. Sloowly.

>Autumn Begins

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A few trees are beginning to turn, the weather has gotten much nicer….cooler and less humid. I am feeling much better, too. Every day without sugar-free ice cream has me feeling better than the day before. Very interesting. The picture is the John Greenleaf Whittier house near Haverhill, MASS. It’s by J. Woodhull Adams. I’ve been by the actual house hundreds of times, since it wasn’t that far from where I lived in New Hampshire. It really does look just like that. The main road goes up on the near side of the house, and there is a smaller road that goes by the front.

I just found out I lost another homemaker, due to agency not providing her enough hours. Her sister is taking over for her. This is one of the most difficult parts of being ill, the constant changing of the homemaker. Some are great, some okay, some not so good, and it’s the good ones who seem to last the shortest amount of time. It’s a crap job anyway, doing other people’s laundry, cleaning other people’s bathrooms, grocery shopping which is not fun even when you’re doing it for your own family. They really aren’t paid very well, either, so it’s amazing anyone even chooses the job in the first place. I think it’s a ‘not enough skills or education for a better job’ kind of thing. But it would be nice to have the same person, if she’s a good cleaner, all the time. Starting over with someone new is hard, especially because of the nature of what they do for me. “Here’s my dirty laundry, new person. Deal with it.” I really hate that. You know how they say, “Be careful what you wish for?” I always wished someone else would clean the toilet, my least favorite job. Well, now someone does, but I am in pain and too fatigued to function and my brain doesn’t work well and my life has gotten more and more insulated and my world has shrunken…….but someone else cleans the toilet. A fair trade-off? I don’t think so. So that wishing thing is really a catch-22 kind of deal. A dirty trick the cosmos plays on you. Oh, well.