Today was a gloriously long day. Usually Sundays fly by. I usually get up too late, have too much to do, and spend too much time dreading the work week to come, but this Sunday was the opposite of all that.

I got up early and stayed active and mindful for most of the day. I got all the cleaning things done before dinner and made time for blog things and for listening to podcasts too. I debated taking a nap, but I didn’t want to lose this good feeling. Naps can go either way, you know? They can make you feel better or worse and since I felt so good I knew chances were high I’d wake up grouchy, groggy, and most likely hungry and suffering from a headache. So I stayed up and did more stuff instead and now the house looks, feels, and smells wonderful and I feel good about myself.

It’s hard to say what has changed in me exactly but last night, after my wife woke me from the couch to put me to bed and before I drifted off to sleep again, I had a good cry over everything that has been going on.

I’m sick and tired of being sick and tired as they say and feeling weak and pitiful. I want very badly to feel strong again and I want to learn to cope better until then. I lamented to my wife about all of this and she simply reminded me that what I am going through is actually pretty serious and that everything I feel is perfectly reasonable. That broke my in the best way possible and, I believe, gave me a more accepting perspective on the situation.

I’m doing just fine, great actually, and that’s all I need to feel or focus on right now.

The play was amazing! My wife had never seen nor read Shakespear’s Twelfth Night so I was worried over whether or not she would enjoy it but she loved it too. The theater itself was really neat. The stage was set in a hexagonal shape and surrounded by seats on all sides rather than being in the front of the room. The stage shape and the fact that we had front row seats meant we felt right in the middle of the action. I already can’t wait to see another show there!

Afterward we treated ourselves to sweet treats from the natural grocery store and ate too many with tea when we got home. I’m tired now and dozing off on the couch while I write this even though it’s over an hour before my usual bedtime. This flare up didn’t ruin my day but it’s rearing it’s ugly head tonight in the form of extreme fatigue. I suppose in the scheme of the last two weeks it could be so much worse. I’m grateful for only tired.

I’m home early from work today, thank God. The stress of trying to get though another day was getting to me and I simply decided not to deal with it at all and asked if anyone cared that I leave. Not one person objected.

I stayed long enough to get my work done and take care of a few commitments I’d made earlier in the week. I’m grateful that even though I’m still fighting this flare up the steroids have made the middle of the day bearable and even somewhat productive.

We had another luncheon at work. One of my bosses brought in homemade lasagna with salad, bread, and mini bundt cakes for each of us. After lunch we all pulled random $25 gift cards from a bag. I was lucky enough to pull the movie theater gift card, my wife and I’s favorite way to pass a Friday night.

Soon I’ll be heading out for some shopping. We’re seeing a play tomorrow (our first play together) and nothing I have to wear feels right. I want something new. Something to help me feel good and fight off the pain and depression of this flare up I’m going through. I’m determined not to let ulcerative colitis ruin this for me and that means treating and indulging myself to the max to get through it.

Happy Friday the 13th!

It’s felt like too much like Friday and throughout the morning I found myself suddenly down and disappointed in moments when I realized it was, in fact, only Thursday. The week continues to drag on.

At least it was a productive day. It’s been a long time since I had one of those. I worked on my first “Bradbury prompts” list and already have a little spark of an essay going around in my head. I wrote over 700 words of it so far, not necessarily good words and I wish there were more, but 700 is a lot more words than I have written outside of my usual posts here in weeks. For it being my first try, and for all the distraction I had to deal with, I’m very happy with the results and anxious to try it again tomorrow, and the day after, and for every day after that until, and if, it no longer works.

After all that writing I felt so good I had to get out into the sun. I went for a walk which turned out to be a bad idea and left me feeling a bit dehydrated and faint through the rest of the afternoon. I keep making the same mistake of pushing myself too far at the slightest sign of improvement and beginning to doubt I will ever change.

I’m stuck at home again. I don’t feel bad this time. I was up a lot last night and this morning I was in pain. There’s nothing I could have contributed like this.

Yesterday my doctor emailed to tell me the lab test had come back. We finally have proof of what I already knew, the inflammation is bad and I am not well. She asked how I was doing on the steroids so far (so-so) and asked me to check in with her in exactly one week. It’s a wait and see game now but it helps to have a healthcare team that follows up and at least appears to care. I have less anxiety knowing she’s just an email away when I need her.

I did make sure to rest more than the last time I took off but I couldn’t help a few cleaning projects and I did make time for a tiny bookbinding project. I needed a new notebook to start my “Bradbury prompts” list in. I needed something portable and ugly enough that I’d have no issues writing in it right away. I made a simple one out of an old manilla office envelope and some scrap graph paper I had lying around. I’ll post a picture later.

My boss’s retirement luncheon was today. We’ve all known he would be leaving for a long time now but the news is really hitting me emotionally today. He has been an amazing boss. The kind that gives you room to be the best employee you can. I wish more managers understood that trying to squeeze every drop of productivity and accountability only stifles passion and kills good ideas before they have a chance to develop.

If you make all of your employees feel important and treat even the lowest level workers as resources for radical solutions and change you can build a better team, department, and company than you could ever imagine.

If you have a boss like the kind I had, the kind that trusts you to do your best work, appreciate them and spread your wings while they will let you. I’m afraid of who will be the next head of our department and worried that I will be reined in and smothered again. Just imagining it exhausts me.

Today started out rough but slowly improved. I am grateful for coworkers who are also friends and who hold me to a higher standard, who support me while I struggle, and who make me laugh. After understanding laughter is the most important thing. Laughter makes you brave, makes you stronger than you knew, makes the hurt and the work so much less and the satisfaction so much more.

Class is still going on and I am still working long hours and still left with so little time for me. It’s ok though, that light at the end is getting closer and brighter by the day. I’ll make it.

This afternoon was hard but for entirely different reasons than the last few weeks have been. I heard some devastating news about a friend and it’s the kind of situation where my help is unwelcome. It isn’t my business or my problem and though I am emotionally invested in the outcome, my involvement will only make matters worse. All I can do is wait, and watch, and hope.

But I’m hurting too. Friendships are risky the same as romantic relationships. We open ourselves up. We let them in, and we have no guarantee that it will last. They can flit in and out, disrupt and damage, or leave you as broken-hearted as any lover. That isn’t to say in this situation I was hurt intentionally or that I have any right to be hurt at all, but I am all the same, and I simply needed somewhere to say that out loud.

Goals // Week 50

This week I have a lot to get done, again, but not as much as last week. The new class of employees is just about done and by midweek I should start seeing more time for myself and I just hope to have the energy, the mental resources, and the emotional stability to focus on what is important when that time comes along.

This week I will:

Read 100 pages of The Plague by Albert Camus. Last week I didn’t get any reading done at all and while I already know I will fall far short of my reading goals for the year, I had hoped to end with at least two more books under my belt. So, this week I have to get back to it. I don’t think 20 pages a day is too much to ask of myself.

Update: I made it just over half way which was better than nothing so I won’t be too hard on myself. I just have so little energy right now that reading has become a chore. I’m actually really missing it and hoping that paring a cup of black or green tea with my reading time going forward will help perk me up and get me through the pages.

 Stay on top of my meal and medication schedule. Between medications and supplements I’m up to at least 17 pills a day. Some of them have to be taken with food, some 30 minutes before I eat, and some make me so nauseous that they have to be spaced out as much as possible front the others. That means I can’t miss a meal, or eat too late, or forget a pill or I end up feeling cruddy or slipping back down hill. My health has to be the top priority now.

Update: I only missed one evening dose of my medication and between 17 pills and having to break my meals up into four a day rather than three I think that’s pretty good. I made some small tweaks to the schedule and wrote it down to keep with me so I won’t forget what to take when. Just 7 more weeks to go like this.

Begin my own list of what I have started calling “Bradbury prompts“. These are simple words or phrases pulled from the mind without too much forethought to kick start blog posts and essays. The list is the first step in the Ray Bradbury WORK RELAX DON’T THINK system. I’m looking for patterns, for concept groups, for my motivation and possibly a project.

Update: I did “start” but I failed to keep going. I did enjoy the exercise very much and saw immediately how it could save me time and help me start writing when I don’t know where to begin. Going forward I really want to make this something I schedule and do every day and follow the list up with 1000+ words toward an essay or blog post based on what pops out of my head and into the list.

Get the Christmas shopping finished for our out-of-town people. December is slipping away quickly and before you know it, the last day for gifts to arrive before Christmas will be long passed. I’m sending to small children and I cannot have them disappointed in on Christmas day when there is nothing from Auntie Lisa under the tree.

Update: I did “start” but I failed to keep going. I did enjoy the exercise very much and saw immediately how it could save me time and help me start writing when I don’t know where to begin. Going forward I really want to make this something I schedule and do every day and follow the list up with 1000+ words toward an essay or blog post based on what pops out of my head and into the list.

Finish my resume! There is a new opportunity coming up very quickly that I know I would be perfect for and I want to be ready but I am procrastinating, badly. I have started but I haven’t finished and half finished means nothing at all. This opportunity was made for me and I have only to be brave enough to reach out and seize it.

Update: I don’t even want to talk about it. I failed miserably to finish it and rather than let myself down again I have taken it off of my list for next week and pledged to revisit the document at home during my winter break. I’ve already added it as an even in my calendar and turned on multiple notifications with note proclaiming “No excuses!”

This week I—hopefully—will slowly be returning to my old self. The temptation will be to overdo it. I’ll want to eat foods I know I can’t eat, to do things that I know I can’t do, and to push myself too far too soon. The danger now is losing progress. This week I have to listen to my body over the needs of anyone else.

P.S. For a look at how I fared last week check out my updated post for Week 49.

Photo by Jeremy Bishop on Unsplash

The medication is working but not all the time, yet. I’m still in pain in the mornings and the evenings but the middle of the day is a glimpse of glorious normalcy.

Usually I’m nearly normal with in two days so the fact that things are still so bad is scaring me a little. The last two times I’ve tapered off of steroids I had to keep going back up because my body could not stay in remission. I have a feeling this will be the case. Behind every positive step is another fear.

Still, the small relief I feel is everything and I am trying to focus on that. I tried to write, but the day started so late that nothing more than my coffee post will go up and even that will be disappointingly late. I’m hopeful for the rest of the week though. I will make progress on all fronts.

My wife tricked me into getting out of the house today. I threw some clothes on early in the morning to run to the pharmacy. She drove, and it was only after we left she said we were also going to go do a little shopping. At first I was angry. I don’t feel well at all and had planned on going back to bed after the pharmacy trip but I know she was trying to do something nice and anyway, it is a beautiful day and perhaps a little sunshine and a little time among the people, could help.

By the time we were browsing the stores I was feeling better. I got a coffee and a few more gift purchases crossed off of my list. It’s crazy how fast time is moving and how little time I have left to ship it all. It’s hard not to panic. I’ll give myself this last week to finish it all up.

Now we are back home and it’s early enough for me to still get plenty of resting done, or writing, or, more likely, housework, or, even more likely, shows to binge watch. The weekends aren’t long enough. I need a day between Saturday and Sunday, or between Friday and Saturday, a day to do nothing at all without any guilt. Tomorrow will be used up on preparation and then I will be back at it, struggling and miserable. Right now a four-day work week sounds like heaven.