>January 31st

> Something strange happened to my computer last night. I went to look for a picture, and they were mostly gone. Vanished. Nowhere to be found. Then it froze up and I couldn’t get past the ‘Your Active Desktop just committed Hari Kari’ page, even after restarting a few times. Shut her down, then this am when I fired her up she worked. But pictures still missing. So reinstalled backups, but didn’t have my latest pics backed up yet. Oh, well.

Then this afternoon my friend Tess and I were playing games and one of THEM was missing. Just gone. What’s that about? I loooove technology. HA!


Finally had a decent day. Not foggy or sleepy or exhausted. Friend came over, we played Luxor and went to Walmart where I stocked up on the food my cats like. The more expensive brand, of course, but it doesn’t smell terrible and is made from real food. Not too cold today, either, but gray and looks like a storm is coming.

Hoping to have some energy tomorrow to get some of this mess cleared up. My new good homemaker is coming Thursday. The old one cancelled for the third week in a row, and I specifically asked for this one as she has done a good job when filling in. So I am happy.

Got my book in the mail. It’s a cancer book, but someone said it helped with their CFIDS/FM and it was only five dollars, so I bought it. Holistic therapies and nutrition information. Hope it has some good info that really works.

>Another update

Looking back over my posts, I realize I didn’t mention my Christmas. It was excellent. I spent the day at my friends’ house, had my favorite meal for dinner (steak on the grill) and relaxed and chatted and laughed and had a wonderful time. I also did NOT take the bus to the store that day I mentioned it.

>Blog Update

I decided to fancy up my blog by adding the links to blogs I read on a regular basis. I do like to read, and they are a varied lot. Bad grammar? I think my favorite is A Year At Oak Cottage, because the pictures are beautiful and the writing is very, very descriptive and lyrical and lovely. So if anyone else actually does read this, I hope you will check some of the blogs out.

We are in for a huge snowstorm, it seems. Although December was supposedly the snowiest month on record for the Boston area, it seems like it hardly snowed at all here. I bought new ice grippers for my shoes from RevelSports.com in Wisconsin. Last thing I need is to fall and break something. So maybe I will actually get to use them, along with my beautiful Sorel boots I bought when I was working. It’s not supposed to start snowing til midnight, and I can hardly wait. I love watching the snow fall.

>A video for you

>This is what I have. The video at the bottom of this post really gives a feel for what it’s like to have this illness. I found it on Catherine Morgan’s blog, “Living With Chronic Fatigue Syndrome”. Here’s the link to her blog. http://livingwithcfs.wordpress.com/

Watching the video makes me feel very sad, because I think I try to push it all to the back of my mind, and just deal as best I can with the symptoms, rather than thinking of the illness as a whole. Is that denial? When I’m tired, I deal with being tired. When I have pain, I deal with having pain. When I can’t think, I remove myself from the activity that requires it, like reading or writing or answering questions. If you put all the symptoms I have together, and try to deal with them as a whole, it is too overwhelming and depressing. So I live in the moment, literally. I don’t think or plan ahead at all, because how can I know until the moment if I will be able to do whatever it is I thought about/planned to do.

It’s very isolating, also, because I can’t think when I’m tired, and if I try to go out on my own, I sometimes can’t think how to get back home. I get on the wrong bus, I can’t find the number of the taxi, I can’t think what to do or where to go. It’s easier to stay home. I’ve had some really difficult experiences with getting home, times the service that was supposed to pick me up didn’t, leaving me standing in the freezing cold and snow for hours without energy to find a phone or think of a solution. I’ve gotten on what I thought was the right bus, only to have it take me for an extended ride and me wondering how/if I’m ever going to get home. Once the bus driver made me get off in a snowstorm to wait for a different bus, after he’d told me his was the one that went to my stop. Things like this can take weeks to recover from.

Of course, the thinking difficulty can lead to other problems, too, like running out of groceries if I forget to plan for the times my homemaker just doesn’t show up, or where to put the laundry she did when the dryers in the laundry room don’t work because nobody collected the coins from them, or how to do the laundry at all when the washers don’t work for the same reason. It does make life interesting, if challenging.

Anyway, I hope you watch the video. It’s about 10 minutes long, and can really help you understand what someone with this illness goes through.

>New Year’s Day Afternoon

Really hoping for a better year this time around. 2007 was the worst year since I first got sick with fibro. I had one six-week period where all I did was sleep, and the ‘good’ days were few and far between. It’s been hard. My homemaker service has been horrible this year as well, with no one coming at least 70% of the time, and they’re only here for two hours once a week anyway. So I am horribly disorganized and cluttered and messy and all those things that make life that much more difficult.

I really need to figure out a better way of dealing with chronic, debilitating illness. No car, living alone, isolated. It’s depressing as well as difficult. Right now I am out of almost everything, grocery-wise, and I am planning on having enough energy tomorrow to take the bus to the stop and shop. Haven’t shopped alone in a few years. The homemaker does that normally, and sometimes my friend Tess takes me shopping. But she is sick with a cold right now.

Oh, I am just feeling cranky. No milk for three days, so no coffee for three days. How am I surviving this lack of caffeine? Gooood question. But I am determined to make this year better all around. I will succeed. I will succeed.

Update Tuesday evening. I showered, dressed, and walked across the street for half-and-half. Coffee for breakfast! Yes!!!