011//366

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.

010//366

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.

009//366

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.

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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.

007//366

It’s the first official day back at work since the break and it’s turning out to be a lot harder to get through than I anticipated. The morning was fine, but I made sure to keep as close to my regular waking time and routine for most of the last two weeks.

No, today it is the afternoon that is exhausting me. I have been spoiled and gotten too used to freedom and control. My body and mind believe I should be at home resting or doing something more enjoyable or fulfilling rather than stressing or dreading the next 3 hours of my afternoon.

Still, I think I am coping well. I was needed more than I thought I would be and though that really cut into the time I hoped to spend on myself it felt good to be able to work. My health is improving and I can feel the difference in energy and confidence since I started working out and moving my body more. I feel sore but strong, tired but in a good way. Suddenly existing as a physical being is no longer a drag.


I’m home late from work, avoiding my to-do list and eating food I know is bad for me as a result. I don’t cope well when plans change it seems. I have to give myself permission to shut down here and there though. It’s the only way I can pull myself back up and begin again the next day. I have to be able to tell myself “Today this is ok, but tomorrow it is not.”

006//366

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.

So I did my work out. I showered. I cooked dinner. I cleaned and put a few check marks on the to-do list and afterward when I had the time and the patience to ask myself again “What do you think?” or “How does this feel?” I got back contentment and pride.

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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.


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?