Statuses

The week continues to wear me down, but I am determined to stay strong and make it all the way through Friday afternoon. I’m halfway there already and besides a bit of fatigue and frustration—which is easily relieved with a little laughter and an afternoon nap—I’m doing surprisingly well. Sometimes just putting one foot in front of the other is cause for pride and celebration.

I do wish I had more time for me right now. I miss writing, or, I miss trying to write, anyway. I miss reading. I miss having time for music, or podcasts, or quiet. It’s only been three days of this hard work schedule but I already feel disconnected from myself and my day-to-day life. It feels good being Superwoman, working long hours, and getting all the things done, but I need time to spend with just myself to rest and decompress. I need a part of every day that belongs to me alone.

Soon though, soon. The long work hours won’t last more than another work-week and in the middle of it all I will have a nice long weekend. I’ll make it, physically, mentally is still up in the air though.

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It came! It finally came! My Penguin Little Black Classics box set was finally delivered today, and it is as beautiful and wonderful as I’d hoped.

When I got home, I saw the box and even though I had a bad headache and needed to rest, I took the box with me into the bed to look over each of the 80 books one by one before nodding off. I woke around dinner time and carried the whole set with me from the bed to the couch to examine each one again and start reading. I’m already halfway through the first one now. I wish I could carry all 80 books with me everywhere. I love them all.

My anxiety over the first day of class for the new employees starting today kept me up all night last night. It isn’t that I was worrying about making a mistake or about anything going wrong. Instead, I laid there in dark just running through the details, trying to create a script for every interaction, find an answer to every question that could be asked, and coming up with a strategy for every obstacle I might encounter.

I just wanted it all planned out and no matter how much I told myself that a perfect or complete plan was impossible I couldn’t stop my mind from racing nor calm my heart from pounding hard and loud.

I think it’s knowing that what I am doing is important. It’s knowing the stakes are high. It’s knowing that there are stakes at all! It’s knowing that what I say to these people has an impact and consequences in not just their lives but the lives of the kids we service and assist. What I do matters and I can’t just breeze through it with an “I got this” attitude.

I owe it to everyone to worry myself sick.

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It wasn’t easy, but I managed to make it through the first day of class unscathed. A lot of things went wrong but not in any of the ways I worried about or tried to plan for last night. Despite my frustrations this somehow makes me feel better. It’s like a small proof that I had nothing to worry about after all. Still, I was on my feet all day and scrambling to appear profession amid the chaos.

My hope now is that all that hard work and stress has exhausted me enough that I will sleep a little more soundly tonight.

I could easily go right back to bed right now. Unfortunately, I’m already at work out in the cold and growing ngrier by the minute about it.

My energy levels are still very low and it hit me that these past few weeks that I’ve been waking up so early and getting so much done, working out and focusing so we’ll we the tasks at hand, none of that was me. It was my medication.

Now that I am coming off of it I’m slowly returning to my old default. This version of me, the exhausted and irritable one, the unfocused and unmotivated one, the frustrated and disappointed one, that one is the real me.

But knowing, or remembering, this also made me realize that I do not want to go on with this pity party any more. This is the reality and all I can do is face it and do what I can with it. I want stop focusing so much on what I can’t do and spend a lot more time focusing on what I can do and what I have done. I can’t make myself have more energy but I can change my expectations and my perspective.

Everything counts and trying is all that matters now.

Not much better than yesterday to be honest, perhaps worse if I think about it too much. I couldn’t get out of bed on time and though I feel a bit of disappointment over it I can tell by how easily and deeply I slept even after having woken up, made myself breakfast, and had my morning coffee. I’m exhausted and there is no use fighting it. I have to give my body what it wants before it has no choice but to take what it needs.

I’m up now though and doing my best to complete just one or two to-do items. I’m not shooting any higher than “better than nothing” today and even that might be asking too much.

But just because I can’t do a big thing, doesn’t mean I should do nothing. I can find something to do that is more in line with where I am mentally and physically. Today I cannot write much, or work out, or get through the list of chores, but I can finish reading a book today. I can pile up the pillows and blankets in a corner of the couch and spend the afternoon with Baruch Spinoza.

I can learn something. I can get a little closer to my reading goals. I can make some use of this day.

I’m tired down to my bones today. I wish I could spend the whole weekend in bed but when work takes up 50 hours of your week everything else has to happen between now and Sunday evening. There will never be time for the kind of rest I really need.

On a more positive note, I at least get to spend the day seeing my family. My brother and his wife moved into a new house this and today we are celebrating with a housewarming potluck. I’m so happy for them and somewhere deep down I am excited to go.

I blame the prednisone. I’m tapering to lower and lower doses every week and caffeine, it turns out, is not a suitable replacement. At least the headache is gone but I haven’t been able to work out since Thursday and I have a feeling my expectations will have to be lowered for a long while.

I wish we were a little closer to the end of winter right now. I miss warmth, change and growth, the color green, and the feeling of being close to nature.

This week wasn’t so bad, actually. The beginning saw spring-like temperatures but the clouds and cold have returned just as the weekend was set to begin. There was a thin dusting of snow on the ground when I woke and since we’ve seen a few short bursts of flurries on and off.

I had hoped for enough sun to make a quick hiking trip in but looking ahead I don’t think it will be warm enough for quite a while. Still, I can feel spring approaching in my bones. Soon, soon…

Work-wise things are quiet, for a Friday. I blame the dreariness outside for the mood and the energy it takes just to keep warm for the exhaustion. I’m looking forward to returning home where it’s warm and cozy. No matter how many layers I wear or how much I turn up my heater at work I never can seem to get warm again until I’m back home. I’m starting to think that a major part of body temperature regulation is maintained by emotion.

Home is warm in more ways than one.

Today feels a little better than yesterday. I’m still worn out and I’m actually much more irritable, but I feel like myself again. I feel whole. I have returned to being made of both body and mind as equal and one and no longer a mind imprisoned and resentful.

It helps that there is work to do and plenty of little ways to be useful, active, and creative. It helps to get up and move and to use my muscles mindfully. It helps that the end of the week is in sight and the weekend no longer feels like an unreachable dream. It helps that I stopped at Starbucks on the way to work and added an extra shot of espresso to my latte.

The weight of my chronic illness is pressing on me, exhausting and depressing me. I can’t move, see, or think past my body today. Just recently I was feeling so proud of this body. I was beginning to not just consider it part of me but to love it a little too. Today though it is nothing but meat and misery I’m forced to drag around and long to be rid of.

I always feel like this on the day’s I have a doctor’s appointment. Today’s was both good news and bad. We’ve settled on a plan that goes past “wait and see”. I’ve waited and though what we have seen has been an improvement, it has been far too slow and too little to consider it a success. So, a little more wait but in the meantime there is will at least be actions to take.

This new plan is better than the one proposed to me a few weeks ago though it means some big changes. I’ll be back on an infusion medication and there will be a lot more wait and see to come. There are a lot of unknowns on the horizon too. Medication that may or may not work, side effects that may or may not manifest, and old symptoms that may or may not resurface. It’s a lot to worry about, and especially hard not to think about when you are supposed to be managing your stress levels.

I’m trying to remember that I am one of the lucky ones. I have support. I have healthcare. I can work. My condition is manageable. I will get through it and it will be okay.

Work was easy today. The general mood of my bosses and co-workers seemed to be a mutual reluctance and lack of enthusiasm. There was an unspoken agreement that since no one wanted to be very productive themselves each of us would turn a blind eye to the lack of productivity in the others. No one asked what projects anyone was doing, and no one batted an eye when we all slowly began to file out around midday.

I had planned to work a full day today but knowing this was going to be my last chance to head home for the day at lunchtime I thought I ought to take full advantage along with everyone else.

I didn’t feel like doing much of anything when I got home but I tried turning my focus for how hard my work out and my to-do list would be to get through to how good it would feel when I got through it all.

I turned off my mind and let myself simply exist, experience, and do through my body. And you know what, it worked. Sometimes we have to take away our own choices to get things done. Sometimes we have to stop asking ourselves how we think and feel about every little thing. Sometimes we have to stop asking ourselves what we would rather do. Sometimes we have to let go of thought and become pure action.

This time of the morning is my favorite time of the whole day. When the sun has just peeked over the horizon and the world goes from dark to suddenly fully, though not yet brightly, lit. There walls of the house turn shades of orange and pink and I can feel the plants, my pets, and my wife beginning to stir around the house. No matter how little sleep I get I always try to get up to witness my little world waking.

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My muscles are sore from yesterday’s workout. It’s a good feeling knowing that, one, I exercised at all, and two, knowing that I do not have to exercise today.

I’ve spent most of the day in the “creativity room” working on bad writing that it turns out wasn’t about anything at all. I’m thinking of taking a break now to refocus my mind. I want to go clean and or read my book. Maybe I’ll go for a walk before the day turns too cold, or maybe I will make my way to the couch for the remainder of the evening instead. Sunday’s shouldn’t be all work and no rest, right?

I woke up early to do some small things around the house and start some writing thinking I would be spending much of the day downtown at The Museum of Contemporary Art, but about an hour into the day, just as the sun beginning to rise, I changed my mind. The enthusiasm just wasn’t there.

I decided that, rather than venturing out into the world to fight the people, and the weather, and my own stupid anxiety, I would spend the day taking care of me instead.

So, I went to the pharmacy for my medication. I did my work out. I took a nice long shower and washed my hair. I listened to an amazing podcast. I changed my blog theme. I did a little writing, and I then collapsed on the couch to binge-watch Fleabag with my wife.

And I think I’ll stay like this for the rest of the night. I’m sore from the workout and exhausted from the shower. I have my laptop, my book, and my journal here, and there isn’t much more I’d like to do or anywhere else that feels more fulfilling to be.