We’ve gone from warm enough for the a/c to almost cold enough to close the windows and start wearing heavier clothes in one day. It’s glorious. Sweaters, blankets, hot drinks, cozy couches…it’s all good. I do not like hot and sticky. I may have mentioned that once or twice before.

I got a mention on another blog. Here:


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I slept til 4:30 this afternoon, after being up very late due to NOT being able to get to sleep. Until I did. I am getting frustrated again. I feel like I have no control over my own life. I can’t be up when I want, sleep when I want, do things I want/need to do when I want/need to do them. It’s all out of my hands. It’s like being a prisoner, or a slave. Your life is in someone/something’s hands, not your own. I honestly don’t know what to do. How to manage my life with this illness. I basically just go with the flow, but since my brain is actually working now, it really gets to me not to be able to use my body the way I want. I need to go to the post office, but I’m asleep when it’s open. I need to look for a new doctor. Same problem. I want to visit my friend after having to pass on several invitations, but can I? Most probably not. It’s not fun to have company who is pretty much incapacitated. At least I’m easy to entertain.

I bought real food this week. After living on power bars for six days of too much pain to do more than open the wrapping and eat what’s inside, I had a relatively good morning. Not day, just morning. So I bought (well, my homemaker bought) real food to make things with. Potatoes and onions for corn chowder. Ground turkey for chili. I forget every single time I have a good spell that just because I am functioning now doesn’t mean I will be when it comes time to actually use the food and make the dishes. Every time. And every time I crash again and just look at the food til I wind up tossing it. Yes, I am frustrated, angry with myself and my illness, at a loss for answers. I am not depressed, amazingly enough, but I probably will be if I go on like this much longer.

Life could be worse, I know that, and I am happy to be as well as I am, but it doesn’t help with the issues. I don’t like to whine, although I do, and I try to always, always see the humor in things and make jokes and not drag everyone else down because of my issues, but sometimes I just wish some one/thing could fix me and give me my life back.

4 thoughts on “Brrrr!

  1. How about making the food while you’re good to go, and then freezing it? And while I’m thinking of it…corn chowder! Recipe, please! I’d forgotten all about that.

    I just sent a letter to Pam (yeah, we still write after all these years) bemoaning some things, and she sent one back & I’m going to keep it because reading it will always remind me just how good I have it (she’s fine; just…life). It can always be worse, but that knowledge doesn’t necessarily make going through it any easier. So go easy on yourself, bitch when you want to bitch, and laugh when you can!

    Besides, this blog IS about living w/ fibro, and that’s not an easy thing to do. Why paint it all pretty when it really isn’t, right? Right. 😉


  2. You think I haven’t thought of that? The trouble is, I buy the food, then the next ‘good-to-go day is way too far down the pike for the food to still be usable. Will email you the corn chowder recipe. Why paint things pretty? Cause people don’t really want to know the real story. They don’t want a friend who is too ‘needy’. Besides, I’m the one who is supposed to take care of everyone else. Still haven’t adjusted to it being the other way around. 🙂

  3. I often follow the same pattern. When a good day rolls around I decide it’s time to make some real food (but still quick recipes), which means I need to buy some real ingredients. Oh, and since I’m going to the store anyway, I best stock up on the daily staples. The shopping experience (making a list, navigating the store, putting the food away) uses up all my “spoons” and then some, before I even get to the cooking phase. And after cooking there’s clean-up. I usually wind up pushing it which means I’m crashed for quite awhile (days? weeks?)…from something that I used to fit “in-between” life.

    I’ve been trying to convince myself that I need to split the time in two. Shop one day, and cook the next. Being very careful of my spoons on the first day. I’m thinking of trying online ordering. And except for the fruits and veggies, I try to buy things that can be frozen in their raw state so that if I don’t get to cooking them for awhile, it’s not a total waste.

    Getting myself to manage my spoons is hard though, as even when I’m careful, there is no guarantee that there will be spoons tomorrow. However, I know that it’s more likely that even if I don’t have enough spoons to cook, that tomorrow will be a better day if I don’t overuse my spoons today. Now if I could just get myself to trust this on my ambitiously “good” days.

    • It’s hard to figure out what will work. I find that what works changes frequently. Every so often I wake up pain free. What’s that about? If it can happen one day, why can’t it happen every day? I have shopped online before. Peapod. It was fine, except I wasn’t sure how much to tip the guy who brought the groceries. I know some people who shop that way regularly, but I have a homemaker who shops for me now, so don’t need to do that. One thing I’ve done that helps is to use 20-minute lie-downs. Before I am exhausted or in too much pain. Lie flat on the bed with a blanket, eyes closed, and just relax. it does help, when I remember to do it. On the couch watching tv or playing on the laptop isn’t the same thing and doesn’t really help. Although I do it…a lot. Thanks for commenting. I appreciate it. Oh, and if I can cook AND clean up after on the same day, that is a very good day.

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