Hello dear readers! Happy Sunday, welcome, and thank you for stopping by for a bit of caffeine and catching up. I’m up late this morning. That’s not exactly true, I was up early, but I found myself back in bed three times before I considered trying a cup of coffee. Now, after a quick cup of cold brew and a little sunshine and fresh air coming through the open windows and I have the laundry started, the dishwasher loaded, some writing going, and I’m ready to sit down with you.
If we were having coffee, I would tell you that I didn’t want to talk about ulcerative colitis this week. I’m sure you are tired of hearing about how much pain I am in or how my medication isn’t working, or how afraid I am of what might happen in the future. I didn’t want to tell you that this week was worse than the last, but at least I’m one week closer to the start of my new medication.
I didn’t want to tell you any of that but May is Inflammatory Bowel Disease Awareness month, and I feel the need to overshare through it. This week I’m dealing with people doing that weird thing where you being sick everyday irritates them.
Last week I got frustrated when a co-worker told me I looked sick asked if I had a cold or something contagious in any way. I explained, for the hundredth time at least, that I am not. She asked what was wrong then. I answered that I had ulcerative colitis. I glossed over the TMI symptoms and just told her I was prone to fatigue and joint pain, she only shrugged her shoulders and told me she’d never heard of it. I could tell she didn’t care to either. She advised me to go to the doctor. I left it at that rather than get into all the doctor’s visits, test, and medications and am already going through.
This isn’t a new experience. Every day someone asks me how I am doing and I can tell that they just want to hear that I am better. They want to hear that there are easy answers. I understand that chronic illness can be hard for people to understand but if there is anything I can make you aware of this month, it’s that for some people pain is an everyday reality, and there are no easy cures. We may never get better, and we certainly will never get used to it, and that is okay. Let that be okay.
If we were having coffee I would tell you that my biggest challenge has been changing my diet to foods that are easier on the guts, but significantly less satisfying. I’m living off of bone broth, fish, boiled eggs, and smoothies. I’m drinking peppermint tea, “golden milk”, and Gatorade to stay hydrated and keep my electrolytes up. If I get a craving for something sweet, I can have Jell-O. That’s it. No hot wings, no pizza, no burgers. I didn’t even get to enjoy any tacos or margaritas this Cinco de Mayo. Ugh!
If we were having coffee, I would tell you that I’m still plugging away at my A to Z posts. I’d planned to post a lot more than just the one I did this week, but work interfered unexpectedly. That break I had been hoping for ended almost before it started.
I’m also struggling to write during the hours I set aside for it at home. I’ve known for a long time that I write better when I am at work, when I am not supposed to be writing, when I don’t really have the time, but I’m struggling to replicate that kind of panic at home.
It’s helped to put my headphones in, to rid myself of the silence and either put on music to change my mood, or podcasts to give me that background chatter I’d find in the office. Coffee helps and getting up for a minute here and there to quickly take care of to-do items, as I would at work when my boss or coworkers need something. I can’t sit on the couch, and I can’t have the TV on. I have to “get ready” for writing like I am getting ready for work. I have to get dressed, eat breakfast, brush my teeth, and go there emotionally.
Of course, I didn’t figure any of this out until yesterday. When I did though I got the first newsletter I’d sent in months out and got a ton on brainstorming in. I’m hoping thinking of writing as work will keep my ass in the chair much more consistently going forward.
This week I am setting goals for myself. I am going to write four posts, including an A to Z reflection, and my “M,” “N,” and “O” posts, plus get another newsletter out. They are a part of the next project I have in mind, and I can’t move forward until they are done. I’m trying to keep in mind this advice I read from Austin Kleon last week:
If we were having coffee, I would tell you that I’m looking forward to the coming week. I don’t have a ton of work scheduled yet, and I’m planning to get back into some old habits I’ve let fall in the past month. I am going to start reading again and journaling. The time I had previously devoted to those tasks became nap time, and while the rest is great, I miss my books.
I’ve also got my magazine and newspaper piles organized, and I’ll be posting some more blackout and a few attempts at cut-up poetry on Instagram. I’ve missed moving other people’s words around. If I get ambitious, I may include some collage art too.
This weather report for the next 7 days looks absolutely gorgeous, and I might reward myself with some time outside. One hour, half for reading, half for writing about my day. It’s a small thing, but right now I need all the small joys I can find.
I may try some walking too. The evenings are warm enough for a trip around the neighborhood with the dog. I know she’ll love that.
If we were having coffee, I would tell you that is about all I can pull out of my little boring life to share with you this week. Nothing much is new, but there have been a few things to think about. Not every week can be about action, some have to be about rest and reflection too.
I hope you had a productive week and I hope your weekend was relaxing. If not, then I hope the next will be better than the last.
Until next time.
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Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli