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.

008//366

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.

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.

005//366

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?

004//366

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.

002//366

I was meant to be at work today but a lack of sleep over the last few nights and two days of stomach pain and headaches have kept me in bed. I was up early though. The sound and sickening smell of dog vomit hitting the carpet had me cleaning and rushing around before 5 AM. It’s my fault though. Last night I accidently left a large bone with her while I went out for dinner with friends. Normally only gets half of a treat like that at a time but in my absence she ate the whole thing. It’s going to be a long day for both of us.

Now the plan for today is to write and to stay out of my wife’s way. She planned a very productive day for herself but my presence can be a distraction for her. We tend to fall into our cozy bubble and forget expectations, obligations, and plans when we are together. It’s a good and bad thing. As much as I’d love to pull her in now and pursued her to forget that to-do list and that feeling of accomplishment she’s chasing but I know that sometimes love means leaving the one you love alone so they can go live that part of their life that exists outside of you.

So, now I’m in the “creativity room” feeling quite directionless. I can’t write so I’m making lists instead which I hope will be useful for the next time I can’t write. I’m watching Crash Course Psychology videos picking out useful phrases, writing them on scrap pieces of paper, and word associating whatever I write down. It feels like I’m doing something but I’m scared I’m really not. I suppose it depends the truth depends on what I do with the lists and notes next.

Most of the time they collect into piles on my desk that get purged yearly. Most end up as nothing but trash because I lose the context that sparked them. I suppose if I went back tomorrow and followed up I could actually make something out of them instead.


Time is moving blissfully slow tonight while my wife and I share plates of leftover crab and sausage, sip the last of the wine we’ll have for a while, and watch episodes of Modern Love on Amazon in a sweet re-celebration of New Year’s day.

The house is nice and clean and after her errands she brought home night lights to put throughout the house for me now that I’m up so often in the middle of the night and so early in the mornings. All that good food, this home, her, our new shared last names, the new year, and the shot of amaretto I had after dinner, all of it is swirling around in my head and filling me with the most exquisite happiness.

P.S. The dog is doing much better. She only threw up twice today and for the most part only on her own blankets and bed. This isn’t even out of the norm for her. She’s always had a rather sensitive stomach, like me. She’s had plenty of water and I’m sure by morning she’ll be back to her old self.

061 // A Peaceful Moment

I can see the snow starting to fall from our big living room window and all my ladies are sleeping around me. My girlfriend is stretched out to left on the couch, the dog is at my feet and the cat is snoring in her tower to the right. The TV is quiet, my girlfriend having nodded off before she could choose a movie, and for the moment, life is peaceful.

I hope for the same peace tomorrow when there will be more snow and nothing calling us up and out of the house. I wish I could have it every day forever, but soon there will be work and a lot of work and family obligations to get in the way. That’s why I mark these moments when I can. I hold them in my heart and pull them out on whenever I’m overwhelmed or anxious.

This kind of peace, I have to remind myself, does exist and I will always be able to find it again.


These entries are inspired by Thord D. Hedengren

060 // The Privilege of Problems

It was all downhill from my morning coffee.

I don’t want to fill this place with more complaints and curmudgeonry so I’ll simply say that I’m grateful for the problems I do have because they are proof of my privilege. I’m grateful to have a job and the respect and consideration of my coworkers. I’m happy to have a home that needs cleaning, friends and family to be obligated to, and a relationship that requires time, patience, compromise, and understanding.

I’m grateful for my problems, and for Fridays, that revitalizing light at the end of the tunnel I need to push on toward the weekend.


These entries are inspired by the journal posts of Thord D. Hedengren