>A light bulb moment. While lying awake all night last night, feeling sorry for myself, in pain, thinking about my life…realization came upon me. When I have a good day, sometimes I go out shopping with a friend. I can buy material, sewing notions, scissors, all the things you need to create something. I can buy lovely fruits and vegetables, meat, whatever. A part of my brain still thinks I am living that old life, and it kicks in on those days. Then, I’m home. Just me. And I cannot do the steps required to make something with that material. I cannot do the steps required to get an actual meal on the table with that food.

My ‘good day’ brain is making my real life brain want to attempt things it knows are not possible. Even on a ‘good’ day, I have trouble getting food on the table. I need to seriously rethink what I need to do, what I need to have, how I need to live in the confines of this illness. I can’t buy a pound of chili powder from the spice shop and expect to use it in my lifetime, let alone in a few months like in that other pre-illness life. I cooked with chili powder a lot. We liked it. I like it. But I don’t need it in quantity anymore.

Trying to make sense of it, and recognizing that there is still a part of me that hasn’t moved on from that other life. It needs to. I need to. I am not that person anymore, and I never will be again. I will never have that life again. Deal with it.

What do I really need? A bed, bedding, a table for a lamp and a book, a place for my clothes. A chair to relax in, a table to eat at, a place for my computer and my desk. A few dishes, a couple of pots and pans, some silverware. Do I need a roasting pan, all those baking dishes, a shelf full of glasses? I’m going to work on this and see where it gets me. Will my life be easier? We’ll have to wait and see.


I am needing to declutter badly. I rarely cook, yet I have all the pots and pans and roasters and gizmos that I had when I did cook. I don’t want to let them go, because I may need to cook a roast or something some day. Right? It occurred to me that I don’t want to let them go because if I do, it means I will never need to cook a roast again, or do anything to feed anyone else. It means that part of my life is truly over. I’m not sure I’m ready to accept that yet. Having a debilitating illness involves so much accepting of things you cannot change, when is the one that does you in finally? You’ve accepted so many limitations, and life changes, and losses, already. Is giving away a roasting pan the final straw that means your life really is over?

I want to live again. I want my life back. I want to be that person who had a wonderful job and had fun and was enthusiastic about things, instead of this person whose main goal in life is just to get through today. Just survive today without giving in to the pain, giving in to the fatigue, giving up on any semblance of anything but existance. I want to keep trying, keep fighting, but some times it is just so hard, and feels so futile. Do I have learned helplessness, or am I really helpless, in the sense that I can’t help myself do the things I want/need to do, things that would make my life cheerier and less stressful?

After this past 14 months, the worst since I became ill, I am living in a cluttered, disorganized mess. I don’t even open my mail, sometimes for days or even longer. What does it matter? What does anything I do or don’t do matter? I am not happy about feeling this way. I am not wallowing. I am just frustrated at my inability to get done those things I want to get done. I know how I want things to be, I am just physically unable to get them there. It wears you down. It makes you sad. I don’t like feeling sad. I need to find something positive to focus on, and move on. Can I?

>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.


>It”s the sixth of June, 61 degrees, breezy and gorgeous. 61 degrees in June! Not being a hot, sticky weather lover, I am happy. The weather is certainly getting interesting as we get deeper into the global warming phenomenon. We are fortunate here not to have really bad storms as are happening in other areas close to us.

It’s done. The house is sold. Now the guilt that I didn’t get a better price, fear that I’m going to wind up owing, rather than inheriting, money. Wishing I could have been there for my mom, sorry that the family’s only asset is gone. Nothing is ever easy, is it? But it’s done. Relief.

I am cleaning (slowly) the messes from the week I was the most ill, and the lousy homemaker didn’t bother with. Otherwise good. Feeling much better, and pacing myself so I don’t relapse. Simon is resting on the desk next to the keyboard, Gertrude is under the bed as usual, Tess will be here soon (Coolatta’s?), life is good.

>Life sucks, then you die

>I was thinking about Richard Jeni today.

The reason they call severe, clinical depression ‘the black hole’ is because when you’re in it, there seems to be no escape, no way out. It is excruciating, unbearable, hopeless pain, and you think the only way to make it stop is the welcome oblivion of death. So he killed himself. How sad.

There is help, but it has to be the equivalent of intensive care for accident victims. Round the clock care. I guess he didn’t get that. Life sucks, then you die. I’m sorry.

>Life is hard

>Almost lost this blog, forgot how to get to it. Been very, very ill for the past month or so. Started with bursitis, then sinus infection. Got meds, infection cleared up but not bursitis. whole thing brought on major flare. I have slept most of the month away. Since mid Feb. Last night I slept 12 hours. Twelve. Today, when I woke up, I felt pretty good, took a shower and washed my pj’s, then I was tired, and vegged mostly. Feeling very sad. Why? I think I’m just lonely, overwhelmed with this illness, fighting to keep up with things, keep in control of my life, and not succeeding at all well. I need help. I am not managing my life at all lately, for quite awhile, really. I don’t even open my mail sometimes. Then I think, well, why should I get help, I didn’t go help Mama. I am a bad person. But I couldn’t. I couldn’t go. I couldn’t help. I wasn’t able. I feel very bad because I didn’t, even though in my head I KNOW I couldn’t do it. I couldn’t live there, I couldn’t take care of her, I couldn’t manage her life. I can’t manage mine. I’m sorry. I am so worn down by this illness. Some days I just don’t want to fight anymore. I don’t want to try to keep a schedule, get up on time, go to bed on time, eat, whatever. I want a vacation from being me, just for awhile. So I can regroup, get it together, get back in sync. Only I wouldn’t, because the illness would still be there when I got back. Life is hard.