I’m feeling good today, which is utterly unexpected considering I had one of the worst nights in a long time. On top of my usual problems and pains, I woke early with a migraine that even total darkness and silence plus a combination of both Aleve and Tylenol would not touch.
I found myself staring at the ceiling before the sun was fully above the horizon and contemplating giving up, rising, and beginning whatever kind of day I was fated to have after a night like that.
Somewhere in her sleep my wife must have felt my frustration, pain, and plans. She rolled over and laid her head on my shoulder and draped her arms over me so I couldn’t leave. I told her I meant to get up, but she only moaned her disapproval and refused to budge. So, I gave in and gave up, and the next thing I knew I was drifting off again.
Two hours later I was a brand new me and I’m convinced today is a wholly different day, all because of her and those two hours of deep and restorative sleep I got. The migraine is now gone and I’ve had enough energy to mark an item or two off my to-do list and spend a little time at my desk.
I’ve missed this space lately. It’s a mess, but I decided not to use up all my time and focus on cleaning and simply sit down and try to create. I made a new blackout poem and I’ve published and scheduled a few posts here.
There was more I could have done, sure, there always is and will be, but it felt good to do a little more than drag this bag of meat and bone from work to bed and back as I have been now for weeks.
My body and mind are a complete wreck today. Part of it is last night’s indulgences, and part of it was today’s anxieties and stresses.
My family has been going through a hard time lately and today was a day to face some hard truths head on. Today I had to be brave, to open up, say what is on my mind and in my heart, and set boundaries and demand that things change so that one day things might really, really change.
It was one of the hardest things I ever had to do, but at least I didn’t do it alone. We came together as a family. For so much of my life I have been the caregiver, the advice-giver, the strong, loving, and dependable one in my family, but lately I have been wondering when and who will ever be all of that for me? Part of me thought, “no one and never”. Part of me thought, “at least not until you ask”.
So, I asked and to my pleasant surprise everyone answered and I was reminded that despite all we have been through, separately and together, we turned out to be a surprisingly well adjusted, loving, and connected family. We have some big problems and we carry heavy baggage, but we are blessed in all the most important ways.
The weekend is finally here and with it a more relaxed, or more accurately, an unconcerned attitude. I feel unbothered and unaffected, almost detached, and it feels good.
Lately I’ve been drifting unanchored, at the whims of currents I cannot control. I’ve been swept up in the emotions and problems of others for too long, and perhaps my mind has hit a limit and has mercifully shut down some of that emotion and empathy I seem to perpetually have too much of.
The downside is my patience is thin and nothing feels particularly important to accomplish right now. All passions are dampened and productivity is suffering. THe upside is, I’m in a sociable kind of mood instead. I want to talk and laugh. I want to connect with the people around me and have a little fun for a change. So, that’s what I’m doing. No work is getting done today, but there are more pressing needs at hand.
Lately my favorite part of Friday has been dinner time. These past months I’ve been forced into a bland, low-residue, and often liquid diet in an effort to cope with a severe ulcerative colitis flare up, but on Friday nights I let myself one cheat meal. Tonight we are picking up baby back ribs, burgers, and margaritas from one of our favorite restaurants.
You don’t realize how exciting food can be, or how much the texture, flavor, and taste of food contributes to your quality of life until you can’t have it. This dinner, and every Friday night cheat night, are the highlights of my entire week. I suffer every Saturday morning, sure, but I’ve never regretted it once.
The weather has improved today. More fall like than winter, which is an improvement over the past few days, but I’d prefer the warmth and sunshine of summer were back.
The week can’t pass by fast enough. I’m in one of those moods where I’d rather be anywhere else and doing anything else other than working. There is nothing particularly irritating or stressful happening at my day job. I just have so much more going on in my personal life and so much I need to do, for both myself and others, that anything I do here feels almost pointless.
I don’t want to feel that way though. I know my work is important and I have always felt fulfilled by it. I don’t want to lose that feeling or focus. I don’t want to always wish I was somewhere else. Doing my best work no matter what the task or goal has always been a source of pride for me and slipping into producing work of low quality or substance would result in profound disappointment in myself.
I suppose I have to work on dividing and balancing my work and home life, though I’ve never been a believer that the two are or should be separate. There is only life, and it happens to you all the time and wherever you are, but I guess some thoughts and emotions, worries and preoccupations must be cast aside from time to time so we might attend to other more urgent or important matters.
They may not even need to be cast aside, but simply allowed to come and pass without resistance or obsession.
It’s my bi-monthly infusion day, which means I spent the morning hanging out with the nurses in the oncology/hematology department getting my 8-week dose of medication before heading home to rest through the late morning and early afternoon hours.
I always take off from work on my infusion days. Not just because I’m tired after, but because the clinic and the fact that I have to go there at all can be so depressing I need time to decompress from the procedure and return to feeling normal.
The nurse asked me how I was doing and how my symptoms were faring. I laughed, though I didn’t mean to. I just didn’t think he really wanted to hear how I was really doing. I gave him the light version but even then, just hearing ugly description of what my life has been like until now felt distressing and disturbing.
I spent the rest of the afternoon cleaning. It’s been a long time since I’ve been able to catch up on my half of the responsibilities in the house. I used to hate chores but now going through the house, room to room, organizing and disinfecting is its own kind of medication and salve for both the body and soul. I needed it more than I knew.
Life continues to throw bad news my way, but I’m determined not to let myself get emotionally wrapped up in lives I’m not living. Most of what I stress about isn’t mine to fix or worry over, but I can’t help wanting to make the world right for those I love, and I can’t help blaming myself when I can’t. I’m trying to remember not every problem is mine to fix and not every challenge is mine to face. My role can be supportive, even if all I can do is support you all the way to rock bottom.
Knowing myself, though, the willpower and resolve won’t last. I can’t help who I am at the core, for better or worse, I have to do something. I just hope I choose the right thing. I hope I don’t risk the work and relationships I cherish the most.
Wintery weather has arrived here in Colorado and along with it my usual irritability and listlessness. I’ve never liked cold weather or snow and I dislike it all the more when it blows in during what is the last of warmth, sunshine, and freedom is left of the season. Watching the grey clouds move in and the rain slowly turn over to sleet, and knowing it will become flakes before lunch, is only souring my mood further and further.
It doesn’t help that nothing I did this morning seemed to go according to plan. I had a class to teach and despite showing up almost an hour early to prepare; I ran into every set back I possibly could.
Equipment was missing, paperwork was missing, and I ran into technical difficulties. Class started late and I fear I looked very unorganized, unprepared, and unprofessional. My three greatest professional fears.
Still, the setbacks didn’t last long. I eventually found everything I needed and help showed up to resolve the technical problems. Class got underway, and I even made up for the late start before the end of the day.
All in all, though, it turned out to be kind of a good day. I am feeling somewhat better than I have been, with a little less pain and a little more energy. I get these good days here and there, but they are always followed by steep backslides into misery and fatigue. That’s ok though. The worst of today is long over and I have already cleared tomorrow’s agenda of work and obligations so I can get plenty of rest.
I’m throughly enjoying my extra day away from work and putting extra effort into resting and being easy with myself.
I did my best to pretend these 24 hours could exist outside of time and reality, but at regular intervals I was reminded that the world around me is still on fire, both figuratively and quite literally.
The red light streaming in through the windows I’m forced to keep closed so not to let the falling ash and smoke smell in is a bit distressing but nowhere near as bad as the constant stream of bad news that seems to come through my phone both on national and quite personal levels.
The personal is paradoxically not personal to me and therefore beyond the scope of what I can share here, and the national is so universal it’s almost not worth mentioning at all.
I’ll simply say, the few moments of peace, no matter how small, have become critical to my well being and cultivating a practice of gratitude, savoring, and presence are essential to my sanity and stability.
I haven’t been meditating like I used to. The mornings are too rushed and the evenings find me falling asleep as I try to count my breaths and stay aware of my surroundings. Meditation started to feel pointless. That isn’t true. I know meditation is one of the best things I could do for my mental and physical health. I stopped because I felt like I was failing. That’s the simple, solitary, and stupid reason.
Tonight the weather is changing. The forecast is calling for all four seasons to make an appearance before the week’s end. Today we saw summer with 90-degree temperatures, but tomorrow will bring winter with a 60-degree drop and a chance for snow. In all my memories of our wild weather, I can’t find another change so drastic between two days.
In light of the weird weather and the chaos and hopelessness all around me, I’ll need solid ground and solid people more than ever this week.
It’s a late start this Saturday morning, but that was entirely by design. In fact, this whole weekend is packed with plans for extra hours of peace and rest, as much as I can fit in around my wife’s continued birthday plans and a couple of small family gatherings and events.
Now that I’m up though it’s time to get moving the best I can and make the most of the daylight I’m given. I’ve already cooked breakfast and hope to push a few updates and page edits out here. There is a half finish blackout poem on my desk waiting to be shared and dishes piled in the kitchen waiting to be washed. What I would like not to do is spend too much time on my phone or watching too much TV.
It’s no secret I have been struggling with my physical health lately, and the impact on my mental health is increasing by the day. I’ve noticed I’m giving in to harmful cravings and losing time to mindless scrolling. Screens are an easy escape but at the end of the day I always feel worse than if I had done something else or even had done nothing.
I’m considering deleting all those tempting apps off of my phone, or at least get them off of my home screen. I need a little distance. I need space to remember how it is I want to spend my days before the icons and notifications decide for me. More than that, I want to get back to not even having my phone in hand. I have limited the notifications I receive both on my smartwatch and through my headphones to only the most important, so my phone never actually needs to be near me unless I need it.
Of course, that’s easier said than done, and it has to start with my mental state first. When you have no energy, when you feel isolated and down, social media can feel like a lifeline and there are times and circumstances when it is but not all times and not all circumstances and lately less and less. I need action. I need work I can do and feel. I need real life again.
What a difference a day makes and how quickly optimism and hope can slip away. I’m not trying to be dramatic. I’m just not feeling well. I’m chronically ill, stressed, sleep deprived, and over every bit of it, that’s all.
The truth, the hard truth, is today isn’t so bad. I’ve had plenty of support and positivity around me, keeping me up, focused, and moving forward. I showed up when I didn’t think I could. I’ve been productive beyond all the expectations I had of myself and ended with more energy than most days. THe truth is it’s been a damn decent day despite all my personal struggles and pains.
And by now the day is long past half over and the end is so close I have no doubt I will make it the rest of the way. Perhaps tomorrow will bring another turn of mood and circumstance, and I’ll find myself returning to yesterday’s high of healing and hope once again, or perhaps not. Maybe all I can hope for is another day of feeling capable and useful, and maybe that is more than enough, for now. It has to be.
I just wish I had more to cling to, more to look forward to than work and rest. I miss writing. I miss my art. I miss reading and learning. I miss being able to make time and to focus. I miss loving myself and my life. There has to be some way of getting back to that version of me.
And I don’t think it’s all down to chronic illness. I think at least half is this sad and lonely “new normal” we’ve all been grappling with. It’s sitting at home night after night. It’s keeping my distance from everyone. It’s missing crowds, and strangers, and experiences. I’m treading water, poorly, and there is very little in sight to cling to, to swim to.
Of course I can’t find the energy for the things I love. I’ve had so little to nurture or nourish my creativity or passion. With so little input, how can I expect to create, share, or connect?
I’ve always been weird in that, where other people struggle and suffer through the first day of the week, Mondays typically find me at my best.
I’ve usually prepared, both emotionally and practically, for the start of the week. I spend much of Sunday worrying and walking through the day’s tasks, expectations, and possibilities. Mondays then end up being the least anxiety inducing day of the week for me because there hasn’t yet been enough time for chance, chaos, or catastrophe to work its way between my hopes and intentions, yet.
All this to say that, despite the hectic schedule and the overflowing list of things to do, today was actually a good day.
We had a class of new employees start today and that means for the next two weeks or so I will be in charge of every aspect of these people’s work life and training. It’s a lot of pressure and a lot of responsibility. I love my job. I love teaching and I love affecting change not just in the way these people approach their job and the children we serve but I love knowing there is a small chance they will take the lessons and perspectives I bring to them into their lives and relationships beyond the workplace.
Still, I expect to be fully burned out and dragging my feet in pessimism and impatience by this time next week.