Hello, happy Sunday, and thank you for stopping by for a bit of caffeine and catching up.
This Sunday hasn’t turned out at all like I thought it would. I thought I’d spend it out of the house. I thought we’d be chatting a lot earlier, and I thought I’d be feeling a lot more stressed out, but I woke up to late to write, then my plans all got cancelled, and I was able to clean, meal prep, and take a nap at my own slow pace. I thought maybe we wouldn’t get to chat at all. I thought maybe I didn’t have the time or the energy but I want to try. I know in the end a little coffee and conversation always helps.
So, please, pull up a chair and fill up a cup. I had hoped the sun would stay out for a little longer but the clouds came in quickly signalling that snow is moving in for the night. I’ve already seen a few flakes blowing in the window. Oh well, spring is on the way. I know because I’ve been craving cold brew coffee again but winter is still here so it’ll be a hot brew instead straight from the French press. Let’s talk about last week.
“A little coffee. A little sunlight. Your troubles will get smaller.”
― Richard Webber
If we were having coffee, I would tell you that this past week was as stressful as always but this time I’m not complaining. I felt better, more energetic, and enthusiastic about my work. I felt not just willing to work but happy that there was work to do and that I had a body capable of getting it done.
Another new class of employees started and this past week they began their training with us to learn how to work with Special Needs students. This class’s is going well but there have been some bumps and frustrations along the way. Unfortunately, being as low on the totem pole as I am I’m at the mercy of nearly everyone else’s wants and opinions about how things should go. I have had to adjust and bend to nearly breaking to accommodate the changes and the class’s schedule has had to be pushed, and pushed, and pushed back and I suspect will have to be pushed some more before the end of next week too.
It’s all right though. I’ve found my happy place and maintained a sense of Zen and calm throughout it all. I can only do my best and anyway, I am paid by the hour. The more they push the better for me.
If we were having coffee, I would tell you that I had my second infusion appointment for the new medication I have been on and I am happy to report that I am still feeling good and there have been so side effects or adverse reactions beyond more fatigue.
There was a bit of bad news after a phone visit with my doctor a few days later when I mentioned that though I was feeling good I could tell it wasn’t 100% yet. She worries I could very easily slip back into a severe flare and to help keep that from happening she has put me back on steroids. The only silver lining is that it isn’t the hard stuff. This time I’m put on something a little milder with less side effects and more suited to long-term use.
I’m halfway through my loading doses now and very soon I’ll only be visiting the infusion center every other month. I’m also coming off another medication and hoping to come off of a third shortly after. This all has me feeling very optimistic but as that optimism grows the dark doubt underneath it compound. Every medication so far has failed and the flares always comes roaring back worse, and worse, and worse than before. I can’t stop wondering when, not if, the next bout of pain will come.
Still, I know even if that pain comes it will be okay one way or another. This week I met someone else with ulcerative colitis in real life for the first time. He’s much older than me and has had the surgery I believe I am on my way toward and he looks healthy and happy. I asked him my questions, which he answered readily, and at the end of our conversation he offered me one piece of advice: not to try so hard to be strong, to recognize when I am losing the fight, and to ask for help often. These words were just what I needed.
If we were having coffee, I would tell you that this weekend was a rather quiet one. Friday night my wife and I went out for a little impulse shopping. The weather was nice, for the end of February and the sun has been setting late enough that we can begin to venture out past our regular routines and enjoy more in the evening than just T.V. and sleep.
I spent most of Saturday on the couch. I took my meals there, and in between I took a couple of naps. I’m not entirely sure whether I needed it. I can’t tell if the fatigue was mental or physical but I know something kept me from making the most of my day off and I’m profoundly disappointed over it. Sure, it felt really good to do nothing at all for a day but I have a feeling it would have felt much better to accomplish something, anything, instead.
I managed to rouse myself from the funk by the time evening fell. We had plans with a group of friends to celebrate a few birthdays. We made our way downtown for dinner and drinks and then afterward we put our thinking caps on and worked as a team to beat the clock by finding clues and solving puzzles at a local zombie themed escape room.
We did our best, but we weren’t able to find the door code before the clock wound down. Half of us had never been in an escape room (including me) and we did choose the hardest room. Maybe we were a little overconfident, and it sucks that we lost but we still had a really good time.
If we were having coffee, I would tell you that I can hardly believe it’s a new month already. February is a short month, sure, but the whole year seems to be flying by too. The whole world has been moving too fast for me lately.
Part of it is the long hours I’ve been working, the chaotic schedule and the rapidly shifting role I’m playing at work and the end of the school year fast approaching, but part of it is everything else too. It’s social media, it’s the news cycle, it the election, the corona virus, the stock markets crashing, the economy on the verge. It’s all the anxiety and anger on the internet and the airways.
I’m trying to slow down, to unplug and decompress. I’m trying to take care of myself, to keep a level head, to be rational, and to stay calm but perspective is hard to come by and I the world is wearing me down. I’m afraid of the new normal and for the next worse thing that seems to come around the corner every day. I think I need some time away. A vacation is becoming less and less something I want and more and more something I’m in desperate need of.
I don’t know how we can all keep up this pace. I don’t know how the world can continue like this before something gives and that big bad thing we can all feel coming finally arrives. OR maybe nothing is coming, and it’s only this state of being so aware and informed that is driving me, and everyone else too, a little crazy. Wouldn’t it be nice if we could all get away for a while, all at once?
If we were having coffee, I would tell you that the sky has long gone from dusk to dark and dinner time is giving way to dessert. It’s time for me to do the work of enjoying the last of my weekend and readying myself the start of the work week.
I hope you had a good week. I hope February was good to you. I hope you enjoyed your leap day. I hope wherever you are the world isn’t moving too fast for you and if it is I hope you know that you can step off the ride whenever you like for a little perspective and a little peace.
Until next time.