Out of Spoons Lately

Lately, I haven’t had many spoons. That’s a term for people with chronic fatigue from any of a number of illnesses.

More on that phrase here:

For example:

Many days I have just enough energy to get up, take my pills, feed myself, use the bathroom, and that’s it. Sometimes, I don’t even have enough energy to sit up in a chair, so I will lay down on my bed and listen to podcasts. Some days, I can’t even listen I’m so tired… so I just lay there and stare at the ceiling, because I’m not sleepy, but I’m way too tired to focus.

Flare periods are horrible. I’d much rather endure pain than be this exhausted!

I’ve had to dial back my activities, and each day I try to evaluate what I can and can’t do. Last week, I had a couple of good days, and by that I mean I had enough energy to do ONE major chore before crashing for the day. One day I blew fir needles and fir cones off the driveway with a blower. And then I had to shower and go to bed. Another day I managed to clean out the chicken coop and then crashed. The next day after both of those activities had me in bed all day, only getting up to eat and use the bathroom before going to bed again.

Some days are a little better and I’m able to watch TV while sitting in a chair. Some days, like today, I can actually write for a while! Maybe only a short while, but at least I can answer email and maybe get a blog post out.

I haven’t had much to say in the last few months because this flare period is a tenacious one. My body is just crapping out. It hasn’t been this bad since the two years after I got married (although that was the worst flare period of my LIFE, and it’s not quite that bad.) My balance goes out when I’m severely fatigued, so I keep bumping into walls and counters and tables… I have bruises all over just from that.

I get one or two days a week where I can do ONE thing that will crash me out afterwards. I can go to the store for groceries and pray I make it all the way through the checkout line and back to the car. Or maybe I can vacuum the floor in one room. And that’s it. That’s all I got.

Over the last few months, it’s become clear that I’m the primary housecleaner among the roomies because the house is getting dusty & dirty. At our last roomie meeting, I asked Cat and Mike to please take ONE afternoon a month with me to clean the house because I couldn’t keep up! They agreed, and helped me clean before our Mabon celebration and feast. Now it’s already falling apart again… le sigh!

I think I’ve been in denial about how bad this has become. I started to have more good days than bad in June, but that didn’t last and I was back to being in constant flares again. Most summers I get a remission, but not this year.

When I get trapped inside a body that doesn’t work hardly at all YET AGAIN, I go through some denial, but then comes the grief. I feel fucking SAD that shit is not working for me. I had a long list of things that need doing, and I can barely keep up with the daily shit. Many days I don’t even eat until 5 or 6 pm because just getting up to walk the short distance to the kitchen is overwhelming.

And it’s not depression either. My mood is, surprisingly, rather good considering! I’ve been through this before, and I always pull out of it eventually. I’ve had to adjust and explain to roomies and friends that I’m struggling and to please be patient with me. All plans are on a contingency basis. I may not be able to do any given thing. Now every plan I try to do as much as I can beforehand because I KNOW I may not be up for things later. Mabon took a lot of effort beforehand, but I managed to complete it before the sabbat arrived, and I was proud that I figured out a way to pull it off.

So, if it seems quiet– it’s because I don’t have energy to make noise. I’m dealing okay, and have support, I just have to get through each day and then the next and hope and wait for better days to come. I’m still here, I’m just not very effective these days.

If the flare period persists for a long time and then I FINALLY get out of it, I’ve learned I’m prone to period of rage for a month or two, because having my life taken away for that long apparently pisses me off like nothing else! I get over that as well, too, luckily. But yeah, this way of living just isn’t fair and it isn’t fun and it’s kind of scary, but at least I’m in a safe living situation and have planned for this, so… it could be a lot worse.