I can hardly believe it’s Monday already, just two days until Christmas, and just over a week until the new year. My wife and I have just a few small odds and ends left to buy, a couple of small gifts but mostly food and drinks. There’s bacon and eggs for Christmas Eve breakfast, salad, wine, and dessert for Christmas Eve dinner, sausage and mimosas for Christmas brunch, and we’ve settled on lamb for Christmas dinner.

Had a chat with the doctor this morning. It wasn’t great news, but it wasn’t the worst conversation you could have with a doctor either. She’s doing her best and just asking me to hang in there. She’s talking about adding more medications and the one’s she’s mentioned seem to have some very harsh side effects. I’m scared and, to be honest, angry. I’m not angry at the doctor and I know it’s wrong to be angry at myself, but I’m angry all the same. I just don’t know where to point the emotion or how to express or how to let it go.

I probably need time. I need to process. Thank God for my support groups. I’m never alone there. I can search for others going through what I am. I can distract myself from my problems by reading about problems different from my own. I can even uplift myself by offering advice to those in need. That is when I feel the best, when I am helping. My holiday isn’t what I hoped it would be, but I’ve still been able to find the spirit.

Goals // Week 52

This week is the last full week of 2019, the week of Christmas and the first of my winter break. I have to work some, but the work will be light and relatively free from stress or frustration. I’ll also have a lot of time I get to claim for myself and I do not want to waste any of it. This week is practice for the new year and a chance to wrap up the last through reflection and resolution.

This week I will:

Finish my resume! If nothing else gets done at all over the next two weeks but this, I will count my time well spent and my winter break a success. I have enough on my plate worrying and preparing over interviews; I don’t want to worry about (or fail miserably over) something as simple as updating dates and duties in a document. The fact is, I am just terrified of change and this small task signals big changes to come, but the change is good and I have more than earned it.

Update: I did it and it looks great. I was afraid that when I was done there would be embarrassingly little to show for all my years with the same company and with very liitle change to my position but it turns out I have done, and still do, so much. I’m proud of all of it and happy to see it laid out in black and white finally.

 Schedule every hour for the next week and then stick to the schedule. This is early practice for my one New Year’s resolution: To be mindful of how I spend my days, and thus, how I spend my life. I’m simply using Google calendar to start and mapping out everything I need to do from the moment I wake up to the moment I go to bed. I’m tired of losing time. I’m tired of looking back on the day and having nothing to show. I want a record, a reminder, a place to be accountable.

Update: I made it as far as Wednesday and then the whole thing fell apart. I should have just sat down and adjust and edited what I had after that but I felt like a failure and so ended up avoiding the whole thing. This can’t happen again though. Mistakes are okay, but given up in unacceptable.

Start an early morning workout, nothing too strenuous. I won’t begin until after the holiday, or until I am feeling a little better, so this goal only counts for Thursday and Friday at the least. I have been pledging all year to start a workout regimen and have failed miserably week after week but now that I am scheduling my time and getting used to getting up early even on my days off; I think an easy 20 minute work out before breakfast and a shower is a good place to start.

Update: I have it all written out, but I only completed one day. I think I need more time in the mornings than I have been giving myself and a space that makes me feel more comfortable. I’ve moved the weights back into the “creativity room”, put up the pull-up bar, and brought up a yoga mat too. Next week I there will be no excuse.

Make time for my plants and pets. The dog has been cooped up, he snakes are being neglected, and my plants are all looking a little limp and brown around the edges. Only the cat is thriving in this newfound independence my chronic illness has given them but even she wishes her litter box was cleaned a little more often. I haven’t been feeling well but they need me too and I have to stop being so selfish with all of my good hours.

Update: I wish the weather had been warmer to walk the dog in but she did get lots of cuddle time, a trip to the pet store, new toys, and treats. The cat is sleeping with me again and the snakes all got fresh clean substrate, nice big meals, and new hides to burrow in. All the plants were watered, pruned, and moved to more favorable lighting conditions as needed.

Post my end-of-year reflections and my beginning of year intentions and goals. I have them drafted but deciding what you want a whole year to look like before it’s even begun is a daunting task. I have no idea what kind of year 2020 will be or what kind of person I will be in it. I also know that whatever I say now will change within 3 months and be completely forgotten by August, anyway. Still, if I want to be more deliberate in my life, I have to try.

Update: I was simple a week too early. This goal was meant for Week 01, not week 52. Still, I did write the posts, mostly, and plan to share them on the days they are meant to go out. If I do it, I will come back and update this post to reflect that.

Enjoy my holiday! I’ve never been a big fan of Christmas or New Year’s. I’ve never liked winter and I’ve never taken much time off during the break. This year isn’t really an exception but I would like to make a little more of an effort. I’d like to look for the good, to see the bright lights, to eat good food, to feel warm and cheerful. It was a good year. I am surrounded by love and support, and looking forward to so many good things. I’d like to celebrate that too.

Update: Christmas was delightful! All my gifts made it to their intended destinations and recipients. I received some pretty neat things in exchange. There was plenty of good food, plenty to drink, plenty of laughter, and I was surrounded by so much warmth and love. I enjoyed every second, and I am relieved beyond words that it’s finally over.

This week I won’t let myself get too down. My health is weighing on my mind and weighing down my body but if I put rest first, eat what I know is good for me, keep a positive outlook, and allow myself to feel pride in accomplishing what I can rather than dwelling on what I can’t I know I can keep on putting one foot in front of the other though to the week’s end.

P.S. For a look at how I fared last week check out my updated post for Week 51.

Photo by Katie Doherty on Unsplash

Today the exact opposite of yesterday.

I felt good yesterday, like myself. I had energy, optimism, and willingness to get things done but, of course, I can’t help over exerting myself the moment I get a drop of energy or feel a single second of relief from my symptoms.

Mentally I’m doing okay. I woke up in a good mood. I woke up with wants and plans and big ideas about how the day would go but none if it is coming to anything real. I’m stuck on the couch, stuck on the heating pad, stuck in this body and I have a feeling the body will soon drag the mind down too. It’s getting harder to concentrate and to not simply let myself sleep because it’s easier.

Today was a good day. My wife and I met some friends at new place for brunch where we ate too much, drank too much, and laughed until our sides hurt. The weather was gorgeous. It was like we were back in September again enjoying the first signs of fall. We left the restaurant giddy and giggling and explored some shops nearby. Until it was time for my wife and I to leave the group and finish our Christmas shopping closer to home.

Of course I never can shop for others without getting a little something for myself. THe local plant and lawn care was having a sale, so I got some evergreen candles, a few new air plants for, and a small white hypoestes phyllostachya for my now vacant terrarium.

I felt good for probably 80% of the day which is a significant increase from just last week where I was happy to get just 50-60%. I’m looking forward to days when I can say I feel great and can be present and useful 100% of the time.

For now, we are home and the truth is I overdid it both last night and today. I’m so exhausted I’m in a bad mood and all my pains are slowly returning. My stomach, my head, my hips and back, all hurt and there isn’t much I can do but put myself to bed but I loath to do it. I hate how much I need to sleep as much as all my other symptoms. I hate missing out on life. So, I’ll do what I know I shouldn’t and wrestle another hour or two from the day.

I know, I know, but I can’t bear to give up any more of my life to chronic illness right now.

Today did not start out as well as yesterday but it’s all my own fault. I didn’t stick to my dietary restrictions and paid the price all night. I was up early all right but unable to be productive or even useful. So, I opted to start my winter break a little early and stay home to rest and think about how I can better learn to control my cravings and do what is best for me in the long run rather than what is satisfying right now.

I feel very guilty about it though. I hate to call in on either Mondays or Fridays. I know that’s when I am needed most. At the same time I have a suspicion that I am overestimating my value and the more likely I’m neither missed nor missing much at all.

The day spent updating my Ko-fi page and tweaking the look of Zen and Pi but very little in the way of real writing got done. I tried to pull a few words out of myself but my mind is a wasteland and there isn’t much more it’s good for now than dragging around the lethargic meat bag I’m calling a body these days. I’m being dramatic, I know. Maybe I’ll go and let myself succumb to what my body is so desperately telling me it needs: a good long nap.

I’ve had a good sleep and I’m feeling better, more energized, more myself. I’m meeting my wife and her coworkers for drinks and afterward we’re seeing Star Wars: The Rise of Skywalker. I’ve been looking forward to this for a month now and I won’t let a little chronic illness or a poor attitude get in the way of enjoying it. Time to snap out of it.

I got an early start this morning thanks to discomfort and chronic illness. I decided rather than letting it get the best of me, to keep me in bed or to keep me down, to let it bring out my best. I figured if I wasn’t going to get any more sleep anyway I might as well get a move on, right?

I think I may start my mornings this way for a long while. Just having an extra 30 minutes meant I was able to slow my pace and make room to eat early, sit with a heating pad, and enjoy my shower and those few small changes made a huge difference in the day. My body may be falling apart but emotionally I’m doing better than I have all week.

Part of the positive perspective might come from the act of fighting through every day rather than despite it. Getting up daily, beating what you thought was your best, and even retreating strategically when necessary all feel like wins and looking at life from that angle, lately, I’ve been rather triumphant.

So, while yesterday was a day of rest and processing, today is a day of doing what I can while I can. I’m back up to higher doses of steroids and taking full advantage of the positive side effects. I’m even adding a half a cup of coffee to boost concentration. I’m catching up at work and making progress on the end of the year blog post drafts I started on Tuesday. I’m looking forward to the evening when I will be back home with my wife and with, for the first time this week, nowhere else I have to be.

I’m back at work and feeling very conflicted about it. I’m feeling better than yesterday but I really wish I could rest for a substantial stretch of time without the guilt and the lost wages. But as far as work days typically go, this one, despite the physical and mental impact of chronic illness, isn’t so bad.

I’ve contacted my doctor and we are going to lengthen the time that I am on the steroids in order to give me the best chance to recover right now. I’m not happy about it, steroids come with devastating long-term effects, but I’m not happy with the way the way things have been improving (or not) up until now either. Something has got to give. Something has got to change. A sacrifice must be made.

For now, for today at least, I’m giving myself what I need most—time to process. I have a long lunch ahead of me, the impeachment hearings playing through my headphones, and magazines to make cut out poems of. It’s still a good day.

I had to stay home again today. I feel pretty crappy but the bigger issue now is the sheer exhaustion weighing me down. I feel like I have had the flu for a month but worse. From what I understand living with an autoimmune disease means my body thinks it’s been fighting the good fight against an infection while it’s only been fighting itself.

I slept most of the morning. I had hoped to get up and get some reading or blog things done but coffee wasn’t sitting well and since I’m still not eating much and I suspect that I may be sliding into dehydration despite all the Gatorade and broth I have been consuming I thought it best to give into the fatigue. After a light lunch and a few more sips of coffee I was able to start a draft or three and to make some theme edits. I read for an hour but my concentration and comprehension were lacking.

Tomorrow I will email the doctor to check in. Hopefully she’ll have some piece of advice or something to try. I can’t keep this up much longer. More and more I’m tempted to forego the work I have scheduled for the break and take care of myself full time instead.

The clouds and bitter cold has returned today. I nearly forgot winter was so close with all the mild weather we’ve been having. I dared to believe we might float on through the new year right into springtime with nothing but 40 and 50 degree temperatures and clear skies. I miss that blissful ignorance.

For a Monday the morning went by quickly but the afternoon feels nearly at a standstill. I blame the meds. Steroids and coffee together in the morning are a potent mix but the crash is unpredictable, sudden, and harsh. I spent my work hours after lunch doing menial tasks with the lights low in the office trying not to fall asleep and not to bring on a headache with the effort.

I’m home now, slightly earlier than usual and dreading the evening to come. There is still more Christmas shopping to do and I’m already so exhausted I know it will take a lot out of me to get it done. Still, it’s important, and honestly the ability to buy so much for so many is a privilege.

I’m looking forward the feeling that comes with having it done and the joy I know giving will bring to others. There is good that comes in the effort and more to be found in the season if you look for it.

Goals // Week 51

This week is going to be a long one, I already know it, but there’s nothing I can do to speed it up or to make the hours less grueling so there is no point in dwelling or whining over it. Instead, I will focus on the moment rather than wishing for the weekend. I will give each of my tasks my best and when it’s time to rest, I will give that my best too.

This week I will:

Read 100 more pages of The Plague by Albert Camus. Having such limited energy level lately means that not only must my best hours be spent on the most physically taxing tasks but that the act of reading has become a rather potent sedative. To be too tired for books is a rather depressing way to live, and I’d rather make cuts elsewhere than go on like this another week.

Update: I did it but I’m not happy with how it went. I read the most on Monday making it halfway to my goal in the first day of the week, but every day after that I made less and less time for reading. What I’m trying to do is read a little every day. I want reading to be a habit. I want to treat each book like a marathon, not a sprint.

 Stay on top of my meal and medication schedule. I’m still tweaking the regime and trying to find the best way to take all my medications and supplements that facilitates maximum absorption and effectiveness and results in as little nausea as possible. I’m doing well but the slightest distraction can mean skipped doses, missed meals, detrimental cravings, and debilitating fatigue. Bonus: Stay hydrated!

Update: It’s been so hard with work, with holiday festivities, time spent out shopping and with my withering appetite but I’m doing my best. I have the schedule down and the pills separated so that they are spread throughout the day. I take them with me wherever I go and I give myself permission to stop and eat when I can and where I can to make sure I stay on top of my health.

Schedule time to create a new “Bradbury prompts” list every day and write 1000 words. There is no goal beyond that. The words do not have to be good. They do not have to be interesting or even make sense. They do not even have to be published or shared. The goal is to practice the art of WORK RELAX DON’T THINK and all I need for that is a pen to write and paper to spill my thoughts onto.

Update: This is my greatest disappointment this week. Making the list last week really worked. It got me thinking, feeling, and writing in a way that I haven’t been able to in a long time. But writing, real writing, the kind that forces me to delve deep, feel my feelings, and then to expose myself to others is terrifying. I famously avoid anything that is hard or scary, so, I just didn’t make the tie and put the whole thing out of my head.

Finish my Christmas shopping and ship packages to out-of-town loved ones. It’s going to be hard but every day after work I am going to have to go back out into the world, fight the cold and the crowds, and get my gifting done. I have a few packages to ship but have little hope they will arrive on time. I just have to do my best.

Update: I’m done! I hated every second of it but I’m happy now knowing all the cute and fun things I bought are on their way to my loved ones across the country. I had hoped to send them a week earlier than I did to avoid the up charge to guarantee arrival by Christmas but I’m content knowing I wasn’t so late it was impossible all together.

Start a gratitude journal. Since I have been posting here (almost) daily I’ve severely neglected my physical journal. When I was journalling by hand regularly I used to end each day with a list of 5 good things that happened or that I felt, no matter how small or seemingly insignificant. These things are often too personal for the internet which is why I haven’t continued the practice but I miss it. Time to get back to making gratitude a daily practice.

Update: I wanted to but to be honest, I wasn’t having a very good week and since the journal is a new one and I couldn’t bring myself to start out a new journal in such a negative time. Things have since improved. I have a better outlook and a lot more hope and excitement for the year to come. I am ready to start fresh for the new year.

This week I won’t let people who don’t have my best interests at heart get to me. I won’t let their bitterness push me to act out of character and I will remember that every opportunity I have I earned through hard work and passion. When I feel my frustration rising, I’ll isolate and immerse myself in my work and look toward a bright future I know is on the way.

P.S. For a look at how I fared last week check out my updated post for Week 50.

Photo by Nicolas Moscarda on Unsplash