If We Were Having Coffee // Good News and Troubling Warnings

Hello dear readers! Happy Sunday, welcome, and thank you for stopping by for a bit of caffeine and catching up.

I’m in a strange mood today. I should be tired. I didn’t sleep well last night and I’m not feeling all that great, but somehow I’m full of motivation and positivity. I’m using my time well, alternating between writing while watching old episodes of ER and cleaning during the commercials. The more I write and the more I clean, the better I feel, and the more I feel like I can do. It feels good to feel good.

It hot out today so we’re keeping indoors and, as usual, I have plenty of cold brew and ice to keep us cool. So, pull up a chair and fill up a cup. Let’s talk about last week.

“I just want to drink coffee from the safety of the porch; watching the rain fall in bounds across the soft green grass. I want you beside me, and we don’t have to say a word. I want to spend the morning just staring into the earth drinking itself under a clouded sky, and finally know my place in it all.”

— Schuyler Peck, We Don’t Have to Say A Word

***

If we were having coffee I would tell you that last week I had my yearly check in with my GI to discuss how well controlled my ulcerative colitis is and what the next steps are.

There was mostly good news but some troubling warnings too. The good news is it looks like I am doing well enough that we can stay the course. I’ve been dealing with some joint pain and fatigue but I’ve been able to work, go out to dinner and have drinks with friends, go hiking, write, and feel happy and hopeful more days than I don’t. I’ve got a life back again soon, for now, there will be no new medications. We’ll just make small adjustments to the dosage and frequency of the infusions as needed. And! If I continue to do well I can wean off the horse pills I have to take every morning too!

I did a slew of lab tests and for the most part results are coming in within standard ranges, but my iron levels are low and I’m being put on iron supplements as well as calcium and vitamin d. I actually do eat a lot of iron-rich foods already so I’m guessing it’s all the damage that has been done to my colon. I can’t absorb anything efficiently and I’m prone to anemia now. Not only that, but I was told to begin getting regular skin checks. I’m more likely to get skin cancer now too.

Since the visit, I haven’t been feeling all that well. I never do after doctor’s visits though. I think I worry about them a lot and that triggers my gut and my immune response and nearly every time I end up back in a flare. I’m thinking of taking up meditating again to try to head it off.

***

If we were having coffee I would tell you that it probably isn’t all the doctor’s appointment making me anxious and sick. My family is going through some hard times right now. I can’t say much about it. It’s not my story to tell, you know? I will say that we’re feeling very fractured and I’m unsure where I stand in all of this. I’m unsure what to do as trying to fix it might only exacerbate the issue but being too hands-off may give the impression that I don’t care and create bitterness.

It’s a delicate balance and much of it will come down to accepting that when we set out to make choices in our lives that are best for us, we risk upsetting others and in the end we may have to accept that whether or not that anger is deserved or not we cannot force people to talk to us, to work things out, to see it our way, or to forgive. It sucks and I am hurt that so many are being hurt and that things may not ever be like they were, but I’m hopeful and willing to help in any way I can.

***

If we were having coffee I would tell you that I was saddened to hear of John McCain’s passing last night, but I’ve been reluctant to join others on social media in posting about it.

My feelings about him—as a politician and a war hero—are complicated. He was a Republican, a conservative, a warmonger and no friend to the LGBTQ community, women, immigrants, or people of color. He was part of a system that dehumanized the already downtrodden and even in death I cannot unknow that.

Still, there were times I felt that I could respect his principles. No, I would not label him “good” or “compassionate” but his presence at least seemed to mitigate the horrors happening in Washington, and will be missed. He seemed to have some kind of moral code and he seemed to stick to it. He was not an opportunist at the very least and I do think there was good that ran through him.

My heart goes out to his family. I know there must have been pain and heartache in his last days on Earth and I know that he has left a hole in their lives. I hope they will find peace.

***

If we were having coffee I would tell you that work wise the week was relatively stress-free. I got a lot accomplished in the office and the kids were well-behaved on the bus. I’m working a lot of hours and normally that would put me in an irritable state but I’m happy to earn the extra money right now.

I did get to check out the new building my training team and I will be moving into this fall. I was anxious about the move but after seeing all the space well have, the kitchen space, the bathrooms, and the real live office we get with a door and everything! I think it’s going to be great, not just because we get to have our own quiet space away from the rest of the staff but because our team will get to be all in one place and we’ll no longer have to compromise or cut back on our work because we have to share space and resources.

***

If we were having coffee I would tell you that I am so far behind on my reading goal for the year that I have given up all hope of meeting it. After a lot of fighting myself, feeling guilty, giving up, and trying again and again, I’ve decided to let go of my yearly goal and focus on daily reading goals instead. I start with 30 minutes of reading a day, and I shoot for another 30 minutes (or however long I can get) before bed. This week I met that goal every single day and I don’t think I’ll ever go back.

When I am trying to read 30+ books before the end of the year I power through every one I pick up. I’m not able to really take in what I am reading or consider the art of the writing beyond the plot. When I’m just worried about those 30 minutes I take what I read during that time very seriously. I study it. I underline interesting phrases and I take notes in the margins. I form opinions. I have a conversation with the author.

For that past month or so I’ve been reading On the Genealogy of Morals by Friedrich Nietzsche. This is my second attempt. It’s a short book but it’s packed quite efficiently with a lot of information. When I was trying to power through it I couldn’t understand it and I felt bad about how long it was taking me. This time I’m taking it slow and this time I not only understand it a whole lot better, but I am fascinated! I don’t agree with everything Nietzsche has to say, but he writes it well that’s for damn sure.

I look forward to writing a review when I’m done!

***

If we were having coffee I would tell you that my stomach is growling at me and I can hear the washing machine beeping. I’ve got a lot to do today, around the house and just for me. It’s time I got up and moving about, I might even get out for a walk today when it cools down of course.

I hope you had a good week. I hope you learned something, made progress, and managed your stress levels in healthy ways. I hope you found time for you this weekend. I hope you saw the sun and the people you love.

Until next time.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a virtual cup of coffee.

Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli

Photo by Andrew Welch on Unsplash

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233 // Help Them Help You

Today was infusion day, again. This was the fourth infusion I’ve had of Inflectra for my ulcerative colitis and the good news is it went well. Another milestone reached, another step toward what might be remission, or what might be failure. Day by day, or more accurately, bi-monthly by bi-monthly, infusion by infusion, that is how I am taking things.

I also had an appointment to see my GI doctor and I was thoroughly lectured about how often I contact her, which apparently isn’t nearly enough. I wasn’t helping her to help me. I told her I just felt bad bothering her. I know she has a lot of patients. I know she’s busy and I figure I’m probably fine or that whatever is happening will pass. I’m always wrong.

She said that it’s true, she is very busy, and it was for precisely that reason that I needed to bother her more. She explained she may have 5,000 emails to get through and that if my labs came back good, she may tell me everything was great and move on because she is trying to get to everyone. She said it was up to me to stop her and tell her right away if I was feeling cruddy. It was up to me to say there was more to the story than the numbers.

That really hit me.

When someone is busy, it doesn’t mean they don’t want to know things, or that they want you to suffer in silence. They want you to help them do their jobs well and be better people by speaking up. They may need to be reminded to stop focusing on the details and the numbers and look at the whole picture, the human picture.

They don’t just need your help to help you, they want your help. Help them help you!

***

I’m trying something new here. In addition to my regular posts, I’m adding these short, daily-ish journal entries inspired by Thord D. Hedengren.

If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a virtual cup of coffee.

If We Were Having Coffee // I Feel Like Myself Again!

Hello dear readers. Happy Sunday, welcome, and thank you for stopping by for a bit of coffee and conversation. I apologize for my late afternoon arrival and the late afternoon heat, but at least I have some cold-brew to offer–more caffeine and no need to water it down with ice—to keep us cool. There is a breeze coming through the windows and clouds that give me hope of a cooler evening than the last.

So, come on in! Don’t mind the dog, she’s a bit nutty, and make yourself at home. Tell me all about your week, and I’ll tell you all about mine too.

“I don’t drink coffee to wake up. I wake up to drink coffee.”

@deathwishcoffee

***

If we were having coffee, I would tell you that last Tuesday I went for my first infusion and I am happy to report not only that it went very well but that it seems to have worked. No, not “seemed,” it has definitely worked! I feel like a miracle has been performed. Like a curse was lifted from me. Like I have come back from something very dark and terrifying to find sunshine and my old self still intact and the promise of happily ever after all around me. I feel like I just lived through a fairy tale.

Just over a week ago I was living on bone broth, Gatorade, and sleep. I was miserable, weak, tired, and terrified. I was missing work and missing out on my life, and now? Less than one week later, I am waking up early, going for runs with the dog, cleaning the house, writing again, and smiling! I am making jokes and feeling optimistic. I haven’t cried in days. I’m eating real food and getting out of the house. I feel like myself again.

That isn’t to say I’m back 100%. For some reason every day since my infusion I have needed a good two-hour nap in the middle of the afternoon. I am assuming my body is healing from all the damage caused by the inflammation and ulcers. I also still have a lot of joint pain and a lot of anxiety.

I’m worried that my symptoms will start coming back before my next infusion two weeks from now. I’m worried that I will start to see some side effects soon too. I’m worried the medicine will stop working at all tomorrow, a month, a year from now and I’ll be back at square one ad miserable. I’m worried I’ll be one of the 25ish% of ulcerative colitis sufferers that will eventually require surgery and all this will have been a waste of time and money.

I am doing my best not to think about any of that. I’m keeping my spirits up by being active, getting back into the things I wanted to be doing all this time, and helping others in need of hope in my support groups. I’m still hanging in there and taking it day by day.

***

If we were having coffee, I would tell you that my poor fiancé, after taking care of me for the past month has come down with a very nasty summer cold. That means I get to jump right in returning the favor!

To add to her misery, she’s been super stressed about work too. The workload has always been a bit overwhelming, but nearly every day this week she was hit with gut-wrenching anxiety about her future there.

She’s always been very good at what she does but what she does is not exactly what she would like to be doing. Unfortunately, everyone knows how smart and hardworking she is, and her bosses won’t let her slack. There is a chance that very soon she will be asked to apply for a huge promotion and her stomach has been in knots trying to decide how she will reply.

I’ve been helping her work on her stress levels, but I’ve never been very good at managing that myself. I’m encouraging her to take walks during the day. To work on her creative hobbies and to count her breaths when she feels especially nervous or anxious. I want to look into meditation, for the both of us, but that is all I have.

If we were having coffee, I would tell you I’m in need of a little help here. Drop some anti-stress tip in the comments if you have them, please.

***

If we were having coffee I would tell you that I am catching up on all kinds of writing and reading, podcast listening, black-out poetry making, and collage art creativity.

I’ve decided to take all on this coming week off of work to sit in my creativity room and just do things. I have all my screen strategically placed. I have my piles of papers and cutouts, and some new inspiration. I have alarms set to get me up, and places to go if I should need a change of scenery. I have my playlists and my to-do lists at hand, and I have a lot more cold-brew coffee premade and ready to keep me going.

I’m not promising to accomplish anything good accomplished. I’m just pledging that I will treat writing and creativity like a real job. Like a commitment I made and now have to really start following through on. More than that, I want to have fun! I want to take a week to pretend I’m not an “aspiring writer with a day job.” For a week I’m going to pretend I am just a writer who writes every day, and that’s all.

***

If we were having coffee, I would tell you that as much as I am enjoying our conversation, I had better be off. The sun has shifted to the west windows, and I hear thunder rolling from far away. Even though this weekend is a long one, I suddenly feel the need to prepare for the week. The house needs work, and my wife-to-be probably needs another dose of medication and a cup of tea.

I hope you had a wonderful week and I hope your weekend is long, sunny, relaxing, and fun. Memorial day is considered the unofficial start of the summer, so be safe, and remember the real meaning of the holiday and all those who made the ultimate sacrifice for their country.

Until next time.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a cup of virtual coffee.

Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli

Photo by Goran Ivos on Unsplash

If We Were Having Coffee // Losing Hope but Hanging in There

Hello dear readers! Happy Sunday, welcome, and thank you for stopping by for a bit of coffee and catching up. The weather this weekend has been gloomy, and by now the gloom has worked its way right into my mood. I’m tired, and all I want to do is crawl back into bed with a good book and a hot cup of tea for the rest of the day. BUT the weekend is only so long, and I know that doing nothing at all won’t make me feel much better, so I’m up, I have my smoothie, a cup of cold brew, and you, to cheer me up.

“The morning cup of coffee has an exhilaration about it which the cheering influence of the afternoon or evening cup of tea cannot be expected to reproduce.”

― Oliver Wendell Holmes Sr.

***

If we were having coffee, I would tell you that yesterday was World Inflammatory Bowel Disease Awareness Day and I celebrated by staying home, resting, and writing. I posted some thoughts on my fight so far with this disease. I tried to convey some of the things that I go through that go deeper than the symptoms and the medication. I tried to help people understand the way it’s affected how I relate to my own body.

Like most things I write here it was written as a reminder to myself, but like all advise we give ourselves, it’s hard to remember and harder to maintain. Just hours after I wrote all that about acceptance and loving myself I had a breakdown. There is so much guilt I have for not being able to be the best me I can not just for me (e.g., not being able to write, to exercise, or go place and do things I enjoy) but for other people too.

It isn’t even the bowel symptoms that are making life so hard! It’s the fatigue and frustration that are forcing me to become so introverted and irritable. I feel myself crawling back inside and away from people, not out of anger but out of exhaustion. I feel bad that I can’t be the sister, daughter, friend, or fiancé that my loved ones need me to be. Of course, they are understanding, but I can see the sadness there. I know that just because I am sick doesn’t mean they stop having needs to and I have no idea how to get back to them.

***

If we were having coffee, I would tell you that as soon as I begin to see the light at the end of the tunnel, it moves. I’m starting to believe the light is an illusion and to fear that the tunnel goes on and on forever.

This week I was feeling a lot worse and was finally forced to contact my doctor. I was trying so hard to hold on and hang in there until I started my new maintenance medication on Tuesday, but what I was getting so bad I was worried about how much damage I was doing to my body by trying to toughing it out instead of trying something else. So, I called the doctor who then put me back on what I’ve learned is referred to as the “devil’s tic-tacs” in the IBD community, Predisone.

Neither of us wanted me back on that crap. It works miracles, at first, and then it wreaks havoc on the whole body and takes months and months to recover from. But okay, it’s what I need to do, so I felt hopeful I would feel better right away, but she put me on such a small dose it’s made only the smallest dent, enough to keep me working. Then I was hopeful that the new maintenance meds would help right away, but that probably won’t happen either. I’ve gotten so bad that it will be another month or two before I know whether this course of action is right or not.

So, I’ve stopped hoping. Now I’m just hanging in there. I’m going from day-to-day, sometimes hour-to-hour, doing what I can and resting when I must.

***

If we were having coffee, I would tell you that writing was slow this week. I just couldn’t get my brain to stay on task. It was drawn to scrolling Twitter and commenting on Facebook group posts. I did my best to redirect my attention though by remembering that I had pledged to get back to reading more this week.

My girlfriend surprised me with a bit of spontaneous book shopping this week to cheer me up after all that bad news, and I settled on The Girl With All the Gifts by M.R. Carey, a creepy, heartwarming, and thought-provoking zombie apocalypse story unlike any other. It was the perfect book to get me back into regular reading. Well written, attention-grabbing, and easy to read and follow. I highly recommend it, and the movie too!

This week coming week I’m going back to The Odyssey. I love this book, but I’ve never been able to actually finish it! Too much detail I suppose. My brain just shuts down, and my eyes start to glaze over and close after only a few pages. I end up having to reread so much of it but I’m determined to finish it this year, so I keep plugging away.

***

If we were having coffee, I would tell you that the coming week is the last of the school year and as you might imagine the atmosphere at work has been tense. There is so much to get done. Graduations, field trips, bidding for summer school routes, bus and equipment cleaning, evaluations, and training. It’s a bittersweet time. We’re saying goodbye to the kids and as relieved and excited as we are we’re all a little sad too.

You get close to these kids, preschoolers and high school seniors alike. Some of my kids are graduating, and some will be moving away over the summer. Even if I get the same route next year, I won’t see them again. Next year new kids will be moving into the district, and many will be moving from elementary to middle school, or middle to high school. There will be new schools opening and routes will be rearranged somewhat and the training department I work for in my off time is moving and hiring new people.

Everything is changing and much of next year is up in the air. I have a little over two months to try not to panic about it.

***

If we were having coffee, I would tell you that the sun is trying to peek out through the clouds and if I am going to get to spend any time outside of the house this weekend, I had better get up and get going now. I need to look at something other than these walls, hear something besides all the bad news on TV. I need to move my body and be around people. I need to feel that sun and smell the spring air.

I hope you had a productive week and that your weekend has been a relaxing and revitalizing one. If not I hope next week will be better than the last and that you find time to do something just for you before the weekend is over.

Until next time.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a cup of virtual coffee.

Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli

Photo by Nathan Dumlao on Unsplash

 

For World IBD Awareness Day // Your Body Isn’t the Problem

It’s been just over a year since my ulcerative colitis diagnosis and so much has changed for me, and about me, since then.

I’ve been through so many medications. I’ve spent a lot of time cooped up at home and come to appreciate every day that I get to spend outside of it. I’ve learned that I’m lucky to have the support system I do and, I’ve learned how easy it is for people to look right through me. I’ve learned a lot about myself, and my body, and how I feel about both, and those lessons are the ones I want to share with you today, May 19th, World Inflammatory Bowel Disease Awareness Day.

Inflammatory bowel disease is an umbrella term for disorders that involve chronic inflammation of the digestive tract. Common symptoms include diarrhea, abdominal pain, fatigue, and weight loss but each person with IBD experiences it a little differently from every other. There can be joint pain, eye, skin, and liver inflammation, severe bleeding, increased cancer risk, and more.

Two types of IBD are Crohn’s disease and ulcerative colitis. The two differ in that Crohn’s can develop anywhere in the digestive tract from the mouth to the anus, whereas ulcerative colitis is confined to the colon or large intestines. In addition, Crohn’s can affect all layers of the bowel wall, while ulcerative colitis only impacts the innermost layer of the colon.

I caution people against comparing the severity of the two diseases. A person with Crohn’s may only experience mild symptoms and may be able to easily control their condition with medication while a person with ulcerative colitis may live in debilitating pain and experience a host of complications for years while trying every available avenue until surgery is required to remove the colon entirely.

Neither of these conditions should be confused with Irritable Bowel Syndrome or IBS, a common digestive disorder that causes abdominal pain and changes in bowel movements but doesn’t cause lasting damage to the digestive system.

Not a lot is known about the cause of inflammatory bowel disease, and there is no known cure, only remission achieved through trying a series maintenance drugs that come with their own risk of side effects until something works. You take that drug or combination of drugs until they stop working, and then you try a different combination all the while toughing out the side effects doctors have little sympathy for.

And as if the disease wasn’t bad enough, and the meds weren’t even worse, there is something even harder to explain, to see, and to cope with, something no one talks about. It’s something hard to put into words and something far harder for someone who can’t feel it to empathize with. The emotional pain and the loss of self, that is what I wish the rest of the world were a little more aware of. How badly I miss who I used to be and how hard it has been for me to love who I have become, both body and soul.

Even the best gastroenterologist, unless they suffer from this disease themselves, can’t understand the shame and the sadness that comes with missing out on life because you have to stay close to the bathroom and the bed. They never tell you how well you will get to know your body, how much time you will spend alone with it, and how little you will recognize it as a part of you.

When I first met with my gastroenterologist 8 weeks after diagnosis, I was already emotionally and mentally a shell of myself. I felt disconnected from my body. I was my mind, my body was something I was chained to, a diseased and weak thing I was forced to drag around. I hated my body. It had betrayed me. It had failed me, and after all, I had done for it, how dare this meat bag put me through so much. I went from being a happy, friendly, and curious person to being angry, sullen, and withdrawn in a matter of months.

I didn’t mean to lose myself so quickly, but your world kind of turns upside down when your body and mind become at odds with one another. It’s a jarring experience, especially for the young. You look at your self in the mirror you are disgusted by what you know is a defective physical manifestation of who you are you. You wash yourself in the shower and can’t bring yourself to look down. You do what must be done by your body, no more no less, no love and nothing extra. You separate from yourself and this disconnect, though natural and completely understandable, negatively impacts your quality of life.

What I want my fellow IBD warriors to know is that defective body you have come to hate is trying so hard to get well and what it needs from you is what you need from the rest of the world. Your body needs support, understanding, time to rest, to heal, to be the best it can be. Your body isn’t the problem. The problem is the world your body has been forced to navigate which leaves no space for bodies in pain and never slows for bodies who need more time.

It’s taken me a long time to realize that my body, me, I, am trying very hard to heal but some parts are just broken. Parts are missing, or maybe there are too many parts. The instructions to function are deleted, scrambled, corrupted, and irretrievable, but my body is trying. I am trying.

I know now that my body hasn’t failed me. I failed myself when I failed to see myself as a whole entity. I failed when I rejected myself. I failed when I dragged myself around like spoiled meat. When I refused to see myself or to love myself. When I failed to be understanding and tender. My body is strong, and it deserves love from me at the very least.

I’m still suffering. I’m still in pain, and I’m still frustrated. I’m still stressed out and I’m still very worried about what the future will bring, but I know none of that is my fault. It isn’t my bodies fault. It isn’t anyone’s fault!

Instead, I point my rage where it belongs. I’m frustrated that it takes so long to move from one treatment plan to another. I’m frustrated by the red tape and the sky-high price tags on medication I need to live my life. I’m frustrated that so many other IBD suffered I’ve spoken too have so little information and doctors who don’t return a phone call or explain where they should go from here. I’m frustrated by people who dangle false hopes of a cure and by the suffering spread by loved ones with no patience, compassion, or understanding.

I’m frustrated by an economic system that won’t let you take time off of work to give your body the rest it needs. I’m frustrated by a society that teaches us that self-care is selfish, that stress is normal, that invisible illnesses don’t exist. I’m frustrated by businesses that close their bathrooms to the public. I’m frustrated by the lack of accommodations everywhere you go. I’m frustrated that the world doesn’t see me, all of me.

I’m frustrated that it’s so hard for me to see me too.

But I’m trying, and I think we should all try a little harder to see ourselves, but especially those of us dealing with IBD, and anyone with a chronic illness. You have to make peace with your body the way it is now. You have to work with it, compromise with it, embrace it, encourage it, and love it. You have to take to be able to look in the mirror and register what you see as you. You have to be able to touch your own skin and connect with yourself.

All bodies will find their limits eventually, and those limits will constrict with time for us all. I want you to know, fellow IBD and chronic illness sufferer, that your capacity for self-awareness, self-acceptance, and self-love will far outpace the average human because you have had to find that truth sooner.

Today, I just want you to know I see you and I know what you are going through. I know it’s hard. I want you to know that I am proud of you and that every part of you is beautiful and good just the way it is.

Let’s make sure the whole world knows it too.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a virtual cup of coffee.

Photo by Annie Spratt on Unsplash

If We Were Having Coffee // Getting Back to Old Habits

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:

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First draft motto

A post shared by Austin Kleon (@austinkleon) on

***

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.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a cup of  virtual coffee.

Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli

Photo by Nathan Dumlao on Unsplash

The Little Things Are Where Recovery Begins

“im team ‘cool karen ive got depression and that means i’m going to try this because i’ve got to try something’ i’m team ‘romanticize recovery’ i’m team ‘it isn’t working now but it might in the future and it’s worth staying to find out’.”

inkskinned

For as long as I can remember depression, anxiety, and god knows what other undiagnosed mental illnesses have been a part of my life. Some of it is nature, I believe. Some of it is nurture, I’m sure. But some of it is just being alive, being a person, being scared, and being hurt and disappointed by life.

Healing is a long journey I am still walking, and one I may walk forever, but I am always getting closer. Through trial and error, research and professional help, and, mostly, fumbling around in the dark, I am learning more and more about what works and what doesn’t.

The first time I sought help a therapist told me—after hearing about the bad things that happened to me, the stupid things I cried about, and all the ways I was hurting myself and others—that everything I felt and did was a perfectly normal response, considering what I had been through.

That is, anxiety, self-loathing, self-destruction, unstable relationships, and depression, were not at all indications that I was broken, or flawed, or unworthy of love. Mental illness is a perfectly human way of existing in this world.

The second time was someone I loved very much pointing out that depression and anxiety are not just illness. They are lies told to you by your own mind. The voices telling you that you are stupid, that you are ugly, that you don’t deserve happiness, that you don’t deserve life, that nothing will ever get better for you, it’s all a fucking lie. Every time that lie is spoken to you, you can speak right back. You can call out the lie. Like any liar who has been caught, your illness will double down when you confront it, but you just let it know that no matter how loud it gets, or what evidence it twists, you will never believe it.

It took me a long time to internalize these lessons, and some days I still struggle to stay on the track, but lately, It’s like I’ve hit a roadblock. My progress is slowing, and now, on my bad days, it feels more and more like I’m taking steps backward.

But my instincts tell me that when roadblocks are met, there are more lessons to be learned.

 

“There is no point treating a depressed person as though she were just feeling sad, saying, ‘There now, hang on, you’ll get over it.’ Sadness is more or less like a head cold- with patience, it passes. Depression is like cancer.”

― Barbara Kingsolver, The Bean Trees

Earlier this year I was diagnosed with ulcerative colitis—a chronic, incurable autoimmune disease that primarily affects the colon. Learning to live with a chronic physical illness, with the impact on my life as well as my emotions and the bunk advice from people who just don’t get it has really opened my eyes.

I’m learning to accept that life isn’t fair, but it’s still good. I’m learning to accept that even when your body fails and betrays you, it’s still a good body. I am learning that even when you are in a bad situation, there is still room for gratitude.

But the biggest lesson of all, the one I really need to internalize right now, is that just because there is no cure, that doesn’t mean treatment is useless, and that treatment is in every little thing that you do.

After my diagnosis, my doctor explained that treatment meant more than just visits to her office and medication. It included taking care of my stress levels, getting in tune with my body, asking for help when I need it, exercising and learning to eat well, drinking water, and making self-care a top priority.

She literally told me to meditate, do yoga, think positive thoughts, and do whatever it takes to get to my “Zen place” because the immune system is directly influenced by stress, anxiety, and emotions.

She added that, of course, none of that will stop my immune system from attacking the lining of my large intestines. There is no cure for ulcerative colitis, but taking care of myself in these little ways will help me achieve remission, and stay in remission, longer. She told me that even when I am too tired, and even when it hurts, even on my worst days, I have to try.

Depression, anxiety, and many other types of mental illness function the same way. You start with the little things, and all these little things are part of your treatment. They keep you healthy enough and strong enough to fight.

Lately, I’ve seen a lot of frustration and anger in the comments and replies of posts and tweets regarding simple self-care reminders and tips as part of treatment. The new thing is to shout about how no one understands depression and nothing can help, that reminding people to shower, eat well, take a walk, drink more water, text their friends, or say something positive to themselves when they can, is bad advice. Those, in my opinion, are the lies I was talking about before and now, with social media taking up so much more of our time and attention, and with our online relationships becoming more and more significant, these lies are finding a new way to spread and take hold.

It’s understandable that after years of being dismissed or misdiagnosed a person might be sensitive to the ways mental illness is discussed by “neurotypicals,” but a lot of what I’ve seen online is too far to the other end of the spectrum. Mental illness may or may not be curable, depending on the cause, but it is under all circumstances treatable. Saying that out loud doesn’t have anything to do with how serious a person’s condition is, and it isn’t dismissive of the struggle and hardships sufferers endure on a day-to-day basis.

And, yes, some of the pushback is warranted. Some people do believe that mental illness is a choice, a weakness of character or failure to control one’s thought, or to properly care for the body and that a diet change and a little sunshine will cure you. Yes, those people fail to understand what depression is, but you have to learn to separate their misunderstanding from what it means to properly care for yourself. You have to take a step back look at how you might be perpetuating bad practices and beliefs about mental illness when you dismiss advice that might help someone else.

We have to be careful how we say things, and we have to be open to letting people heal in the way that makes sense for them. We have to be careful about confusing what doesn’t work at all and what doesn’t work for me.

There are some who may be losing a battle right now, they may be looking for help and what you say can sway their resolve either way, especially when they are young, or newly diagnosed, or undiagnosed but in need of help. To tell them there is no getting better is to perpetuate the same lie their illness is telling them. We have to change the narrative. You may not be cured, but you most certainly can get better!

Every treatment option doesn’t work for everyone, and certainly, none of them work for the same person all of the time either, but any doctor will tell you that to fight a disease you have to do all these little things if you want to be strong enough to fight.

Let others start with just being able to get out of bed and eat something so they can take their medication. Let others start by getting outside, taking a walk, and enjoying a damn sunset, so they can get out of their own heads for a minute. Let others have their face masks, bath bombs, and glittery nail polish so they can love themselves for a moment today. Let other people have silly conversations, and laugh a little, so they don’t feel so alone. Let other people try things!

Some days wallowing might be the best you can do, but it is no long-term strategy. Remission is the primary goal. You might not know what “no evidence of disease” will mean for you yet, but you don’t have to. All you have to do is keep working toward the best and healthiest life that you can have.

So I guess that’s what I am trying to do here. I am saying to you and to myself that, yeah, it sucks to wake up every morning feeling the way we do, and I know that people don’t get it and everyone thinks they know what’s best for us but please, don’t give up. Please, don’t shut yourself off from things that might help.

Be honest with yourself about what healthy means and what you know you struggle with. Be honest about what you haven’t even been trying to do, and try to do it. Try eating something today. Try taking a shower. Try drinking more water. Try a face mask. Try getting out into the sun. Try texting a friend. Try looking in the mirror and saying one nice thing. Try breathing. Try helping someone else try.

It might not cure you, but it might make you strong enough to find a cure someday.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a cup of coffee.

Featured photo by Ben Blennerhassett on Unsplash