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.
Why are you so afraid to create? Why do you put so many obstacles in your own way? You drown your strength, you waste it.”
Different ways to tell a lie/mixing secondary colors/the addicting bitterness of coffee/how to ask the right questions/books that fit in your pocket/vulnerability in friendship/henley shirts/freshly sharpened pencils/the times of day that feel safe/the thrill of spicy food/cold showers/knowing the world through emotion/suddenly ostracized members of elementary-aged friend groups/Solipsism/the build-up of dead skin cells in the winter/how quickly X-Acto knives wear dull/what the word “sorry” means to me/birds that collect shiny objects/sleep procrastination/how much hate gets expressed in love/seizing the means of production/the quiet companionship of plants/pomegranates/where people go when I forget them/manifestos/is it possible anymore to do nothing at all?
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.
How honest we are with others flows always from how honest we are with ourselves. And how honest we are with ourselves depends mainly on how brave we can be in any given moment.”
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.
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.
Hello and happy Sunday! Thanks for stopping by for a bit of catching up over a delicious cup of coffee.
I’m up early this morning thanks to an early night last night. It was a big day yesterday and in order to get through it I had to use up every last drop of energy reserve I had. Today I feel as though I have almost nothing left, but it’s more in the body than the mind. Physically I don’t even want to move. Mentally I’m wide awake and ready for the day. It’s a frustrating predicament to be in but I’m hopeful the coffee will go a long way toward equalizing the two halves.
So, please, pull up a chair and grab yourself a cup. I’ve got a big strong batch of blond roast steeping in the French press and some silky smooth vanilla soy milk to pour over top. The gloomy weather be damned, we have sunshine in a cup and conversation to warm the soul. Let’s talk about last week!
“There’s nothing sweeter than a cup of bitter coffee.”
― Rian Aditia
If we were having coffee, I would tell you that last week was at least less stressful than the week before but beyond that there was much good too it. The new class I have been training has finally moved on from the classroom and testing portion of their probationary period and needing less and less from me. I’m already hearing rumors about another class bigger than the last two coming in January. I’m a little nervous about it but from here that feels so far away I simply told my boss I wasn’t ready to discuss it yet. I don’t need the additional anxiety right now.
Productivity-wise this week was a real roller coaster. Most mornings were hard. I’m still suffering with this ulcerative colitis flare and though I was certainly feeling better than the week before I still found it hard to make it in to work. I had to miss one day but I probably should have allowed myself more. It’s hard to accept that there is a lot I can’t do right now and hard to let go of guilty and worry about what others might think, but it’s getting easier. I’m one of the lucky ones though. My supervisors understand and my workplace policies allow me to take the time I need to get better without risking my livelihood.
I did receive some good news too though. My boss has decided to stay on through the end of the school year rather than leaving in the next few weeks. I wrote about him earlier in the week, about how great it has been to work for him and how rare those kinds of managers are. The fact that he’s staying means an easier transition over the summer rather than now.
I also I found out he’s sending me out on two major training trips in the next few months. A Crisis Prevention Training course in January and a major school transportation conference in March! I’m so excited to know that my workplace values me this much and so proud of myself for working hard and earning it.
Health-wise I felt very up and down too. I’m disappointed in how little the steroids are helping this time around and struggling to cope emotionally with the ways my work and home life are being impacted. Ulcerative colitis is a lonely disease, even when people care they can’t understand and understanding is what I desperately need. Luckily there are many support groups on Facebook and whenever I feel particularly sickly or down, I jump in there and read stories of others hurting in all the ways I am too. It helps to answer questions, offer support, and to vent when needed.
If we were having coffee, I would tell you that with the additional down time I had from both the lack of work compared to the week before and from my simple need to rest I was able to get a bit of reading and writing in.
Some weeks ago my wife—who understands my little interests and obsessions more than I realized—brought home a 1965 Modern Library College Edition of The Plague by Albert Camus she’d found in a thrift store. I read The Stranger a few years ago and loved it but so far The Plague is much more interesting. I love stories about plagues and I love stories that ask big questions and make big statements about the human condition. I can’t believe it’s taken me this long to get around to this fascinating little book.
On Monday I made my first list of “Bradbury prompts” and wrote the beginning of what I hope will be a blog post for Zen and Pi, eventually. It’s a very winding and convoluted mess at the moment and I can easily see it being split up into two of more posts to narrow the ideas. The point wasn’t to write a post though. The point was to just write. To write about something that, though it may begin with me, has broader implications. To that end the exercise was a success. I found some spark in me and was able to write nearly 100 words with passion. It’s been a long time since I felt that and knowing it was only the beginning is very exciting indeed.
If we were having coffee, I would tell you that this weekend has gone by too fast, but it has been a good one.
Friday night my wife and I went out for a little shopping and though we came home empty-handed and exhausted, we did get to try some awesome take out from a new chicken place up the street and, though winter and the accompanying holidays have never been my favorite time of year there is something nice about being out after sundown with all the other weary shoppers prepping for a day of gifts and giving. There is a kind of warmth and hope in it that you don’t feel in any other season.
Yesterday we woke up early for a long planned “Saturdate” together. We returned to our new favorite lunch place downtown and at some of the best sandwiches you can get anywhere. Afterward we headed to the theater district for a performance of Shakespear’s Twelfth Night, my favorite drama I read this year.
We’ve been to the theater district many times for ballet performances but this was our first play together. We had front row seats and with the circular stage and the fact that this particular play was a comedy we felt fully a part of the action. I think I have been fully converted. The ballets were nice, but they have nothing on the action of a lively play.
Next weekend we have more planned. I’m meeting my wife’s new coworkers for the first time over drinks Friday night and afterward heading to our favorite theater for dinner and Star Wars: The Rise of Skywalker. Saturday we’re heading to brunch with some, though sadly, not all, of our married couple friends. I’m looking forward to it all, and the next Sunday of rest afterward too.
If we were having coffee, I would tell that before all of that I have to get through the work week. It’s the last before our long-awaited two weeks off for the holiday break so I know it will feel very long. I’m expecting a lot of cheer and a lot of frayed nerves too. We’re all beginning to feel burned out and we know there is a lot more winter and a whole lot more school year to go. Still, making it halfway is worth celebrating and two weeks of rest is certainly a gift worth looking forward to.
I have very little work planned and I’m giving myself space for rest between meetings, tasks, tests, and obligations. The less I have scheduled the easier it will be to stay home if and when I start feeling bad again.
I have a little more Christmas shopping to do and packages I have little hope of shipping before the deadline to arrive on time. This means that every day after work I’ll be out and around town wearing myself thin to get it done and then coming home to box and wrap it all before collapsing in bed. I don’t even have any Christmas plans yet so I supposed I should work on figuring that out too. I’d love to stay home again, just my wife and I, relaxing and eating and drinking the holiday away but I dare not risk offending family twice.
If we were having coffee, I would tell you that the weather is growing gloomier outside and I am growing more and more fatigued with it. The dishes are done, the meals are prepped, the christmas shopping list is updated and the purchases so far are sorted. The cat and dog have already drifted off to sleep next to me and I think it’s time I joined them.
I hope you had a good week. I hope you are feeling well and that you made some small progress or found some small good to be grateful for this week. I hope you aren’t stressing too much over the holiday season and that you get to enjoy a little time for you between all you have to give to others.
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.
Read 100 more pages of 
Schedule time to create a new “
Lisa Marie Blair 