The weather has turned wintry again. I’d hoped to work outside a little or fit a walk in before the temperature dropped, but the morning warmth never arrived and the clouds carried too much gloom. The cold kept me inside, bored and irritable, and time slowed to a crawl and I grew more and more anxious to return home.

I did try to keep a positive attitude through the grey day. I’m still feeling good physically and any way a boring day is better than a bad day, right? I tired, but I didn’t get far with that. There was just not enough excitement, laughter, progress or accomplishment to boost my mood.

I think I’m just missing the warmth and sunshine from the first half of the week. More than that, I’m longing for the days when I could leave work and walk over to the coffee shop to read or write for a while before anyone even knew I was gone. I can’t wait until Spring, or the coronavirus vaccine, or whenever the world might open up again and those third spaces I hardly used and always took for granted can offer my that escape I need.

I love my home, and work is never as bad as it could be or as bad as I think it is, but I need more than that routine. I need a place that puts me among other people, where I feel both part of the community and apart. A place that offers a new perspective.

This morning is off to a nice, smooth start. I got up on time and made it through my routine easily. I’ve started thinking of each day as beginning the night before and sticking to a bedtime routine that helps me prepare that included going over my to do list, getting my bags and clothes ready, and spending some time cleaning. This week my stress levels are notably lower, and I’m spending less time laying awake at night with worry.

I think getting back into my daily meditation groove is helping too. I didn’t realize how much I had missed, or needed, those 10 to 15 minutes of focusing on body and breath every morning. It’s hard not to beat myself up over the months’ long lapse but I’m countering it with plenty of praise for taking up the practice again.

Symptom-wise, I only continue to improve. Some side effect of the new meds is joint pain and headaches, but even those discomforts are getting better with time. Every day my energy and drive increase and so does my ability to find purpose and joy.

The doctor mentioned that a big contributor to my fatigue may be a depletion serotonin levels. I had no idea that so much of the body’s supply of the “happy chemical” was made and utilized in and by the gut. I’ve been advised to manage my emotions and rebuild endurance through time, rest, and plenty of self-care and forgiveness. The journey so far is easier than expected. It helps to have so much to be grateful for.

I was meant to be at work today but instead was forced to stay home in bed by a nasty neck pain/tension headache combo that no cream, sleeping position, or pain reliever would touch. I worried I’d be incapacitated all day, but a few extra hours spent resting in dark and silence did the trick, and by mind morning I felt a lot more like a human being again.

I had hoped not to need to miss anymore work for a while since I’ve been feeling so much better, but medications, and coming off of medications, come with their own side effects. My body is only adjusting.

There was some good news, too. For the first time in many, many months I had an appointment with my doctor that was all positivity and hope.

One interesting things we talked about was the increasing effect my mental state is going to have on my symptoms from now on. It turns out that because of all the ongoing inflammation and scarring, my gut will never be the same. My system is going to be a little more sensitive than most, a little more at the mercy of outside influence.

I will have to get used to a new normal, and that means listening and acknowledging not just my body, but my feelings too.

Everyone’s gut is affected by emotion, but for someone like me who’s gut has sustained so much damage, every bad day and stressful situation is going to mean discomfort and distress. That means getting enough sleep, meditating, exercising, journaling, taking time for myself and doing the things I love are much more than necessities. They are now treatment.

They are medicine that must be taken daily as prescribed, as scheduled, as needed.

This morning is adhering a lot closer to plan than the last few have. I’m up before the sun, my favorite time of day as long as I get to spend it sipping coffee and reading in bed next to a sunny window rather than stumbling through the beginning of the workday routine, and from here things are only looking up. I have nowhere to be and nothing much at all I have to do.

These days, these not quite work days but not quite weekends, are quickly becoming a large source of peace and fulfillment for me. I’m concerned about how hard it’s going to be to return to a full-time work schedule after the turn of the new year, and even more so after the corona virus vaccine becomes widely available and distributed.

The pandemic has really put into focus what matters, and at the top of that list is time. It’s become clear how much of it I have been giving up, how much we’ve all been giving up. Forty hours—and often more!—a week spent doing what? I love my job, but it isn’t for me. I don’t do it because I love it; I do it to survive.

I have to give up my life in order to live? It’s all so contradictory, depressing, and, the longer the pandemic wears on, infuriating.

I want the pandemic to end, but I do hope life doesn’t just go back to normal after it’s safe to leave our homes and be within six feet of each other again. I don’t want to go back to working so many hours a week. I don’t want to go back to feeling guilty for staying home when I’m sick. I don’t want to go back to long meetings, and crowded offices, and impossible expectations.

Sadly, I suspect everything in the workplace will go back to the way it was and faster than I can adjust physically or emotionally. People are just too happy with what is familiar even if a little change, uncomfortable adjustment, and imagination is all it takes to give a world with a little more balance, peace, and, most importantly, time.

Yesterday I was grateful for modern medicine, today I loath the entire American health care industry.

Long story short, I made a minor mistake that resulted in needing my medication replaced, not refilled, but my insurance provider refused. They admitted that the mistake was both understandable and commonplace, but instead of having a simple and compassionate solution ready; I was directed back and forth from department to department and between them and the drug company again and again and again.

The process was stressful and disappointing at every level. I was left feeling incompetent, completely alone, and terrified of what a missed dose might mean.

The worst part of any illness isn’t the illness itself but dealing with pharmacies, drug companies, insurance providers, and all their bureaucratic roadblocks and the problem is infinitely worse that illness and consequently the bureaucratic roadblocks are chronic.

The good news is that within this cruel and capitalist system there are a few good people and between my doctor and the nurse ambassador with the drug company I’ve been reassured I will probably be okay and that I am not, in fact, the world’s number one failure.

So, so much for a day that belonged to me. I spent the rest of the afternoon and evening trying to destress and salvage some self-esteem. Ordering a pizza with my favorite toppings, watching old episodes of Veep, and knowing I still have tomorrow to myself helps a lot. Today wasn’t a good one, but it’s already in the past and soon it will join every other bad day I’ve ever had as a distant and dim memory, something to laugh about or repress forever.

The only good thing about having to work during a pandemic is at least the schedule is light. The first half of the week was hard, but in order to minimize the number of people in the office, everyone’s time is split and Wednesday has become my new Friday. I only have to get through midday and the second half is all mine. Hours to fill as I please, or as my energy or anxieties will allow, though there is more hope for me this week than in many weeks past.

To be honest, I’ve been reluctant to write here lately. For so long now there has been nothing but bad news and worse news. This year, my year, like the year many of you are having too, has turned out to be one of the worst in recent, if not complete, memory and for many more reasons than the collective COVID one.

It’s no secret chronic illness has been kicking my ass and with nowhere to go and nothing to do but work and wallow, there hasn’t been much worth sharing or saying, until today. Today I feel good. I have been feeling good, and I want to share the good news with you now.

Some weeks ago I started a new medication and treatment plan and for the first time in many, many months pain, fatigue, and distress are no longer defining every waking moment of my life. For the first time in many, many months, I recognize myself in the mirror.

What’s funny is, this year has been so hard on me that even speaking that good news scares me. I’m worried I’m wrong or that the improvement was only temporary, a tease, another trick of 2020, but some time has passed now, enough to allow a sense of optimism to creep in.

I can imagine a life that is more than work and sleep again. I’ve been reading constantly and thinking more and more of writing again. I’m excited at the prospect of making something of this last month, even if all I do is spend it preparing for the new year. My expectations aren’t high. Being able to do anything at all is progress. I’m happy and hopeful again, and that is everything.

For weeks, maybe months now, I’ve been longing for time to do nothing but what I want to do, even if that means doing nothing at all, and finally that day has arrived. The plan is to catch up on much-needed sleep, reading, journalling, doomscrolling, and more sleep.

The weather has taken a strange turn since this morning. The day started sunny and calm, but very quickly the wind began whipping around the house and dark clouds rolled in on it. I could hear trash cans, and furniture, and things blowing through surrounding yards and all day hoped the fences, trees, and power lines would hold upright.

Besides the cold creeping in through every hidden crack and failing seal and the eerie sounds waking me again and again from those much-needed naps, the winds passed with little more than threats and this evening we’ve returned to quiet and calm.

Inside I’m feeling far from peaceful though. Yesterday I spoke with my doctor and we are officially and finally changing course in my care. There are going to be new medications, new expectations, new hopes, and new norms to get used to—again. It’s a good thing really, because what I am doing isn’t working, but change is always scary.

So, in addition to resting, I’m processing what all of this might mean and how I feel about all of it. I’m working hard to practice acceptance, gratitude, and self-love. I’m forgiving my body and focusing my thoughts on how strong I have been through all of this. Moving forward I’ll have to keep being strong and that means gaining a new perspective. That means crawling out of this funk and finding the blue sky, even if I have to wait for a few clouds to pass first.

Winter has returned today with gloomy skies, steep temperature drops, and fat snowflakes falling off and on throughout the day. Thankfully, I’m working from home and get to watch this weather roll in from the warmth and comfort of my couch.

For the next three days, I’ll be attending a big and important virtual conference for work, and my district has trusted me to bring everything I’ve learned back to my coworkers. I’m excited about the opportunity and honored by the trust but I can’t help feeling a little bummed that the event isn’t being held in person, that I am not staying in a hotel somewhere in a city I’ve never been, enjoying a continental breakfast and networking in the lobby.

Still, there were some very cool moments, including the chance to hear animal behavior expert and autism activist Temple Grandin speak this morning! She is such an interesting and insightful speaker, and I feel ashamed not to have heard more of her talks until now. I fully intend to scour the internet for every video I can find of her. Might re-watch the film based on her life too. Might even buy her book!

Still, not everything has been good today. That great weight that had previously been lifted from my chest has already been loaded back on. My workplace has reversed position and asked that staff members return to work as early as this week.

At the same time, I’m also reading reports that my state is experiencing an uncontrolled spread of the novel coronavirus. I had hoped that management would allow us all some time away to take the precautions we needed and keep ourselves and our loved ones safe, but I guess the priorities have changed.

This all leaves me feeling very…angry. I simply can’t see any reason why we have to come back in so quickly. The students are staying home and the district has agreed to pay us through the next month. So, between the risk of contracting the virus and the benefit of having us all at home (including the chance to disinfect our work areas), I just don’t understand the reasoning.

Underneath that anger, there is fear. Even by the districts own metrics it isn’t safe for us to be at work and without knowing how my coworkers are spending their personal time or what precautions they are—or are not—taking I don’t feel that simply wearing masks, using hand sanitizer, doing our best to maintain a six feet of distance between us will keep me safe.

But what choices do I have?

The exertions of the last few days to weeks have finally caught up with me. Every muscle above my waist is sore, and I can’t seem to find the energy for even the most basic items on my to-do list. A can of Redbull and a little music are helping at the moment, and knowing that for the next three days I get to work from home and by midweek my time will be all mine for at least the next three weeks.

In the meantime, I’m simply doing my best and trying hard to let that be enough. It hasn’t been easy though. Everything I touch or try to do today seems to be going wrong, and I’m falling into negative thought patterns too easily. Instead of this mistake being normal, understandable, forgivable, I’m seeing every misstep as a confirmation of some inherent badness in me.

I’m holding these false narratives at bay, for now, but guilt and low self-esteem are threatening like dark clouds gathering on the horizon. I’ve just got to keep moving against the wind and I should make it to the end of the day, but if I stop for even a moment to look behind I know the blue skies will be overtaken and I’ll be engulfed in gloom and doom until morning.

Even though it’s the weekend, and I’d be off from work anyway, it still feels like the first day of my second quarantine which is feeling more and more like a kind of vacation from all those things that have been terrifying and stressing me so much lately. I woke up light, happy, and feeling more like myself than I have felt in a very long time.

Today was also first time in weeks—months maybe—that I have been able get out of the house and do something for me. Some much needed shopping was done and some shopping that was just for fun. I enjoyed some of it very much, and some of it not at all, but I’m home now, feeling a little tired and very content.

In light of the recent rise in COVID cases I can’t help worrying over my little outing. I hoped the stores would be somewhat empty what with our local officials recommending we all take further precautions but it was quite the opposite out there. The stores were packed. Everyone was wearing their masks but social distancing was nearly impossible and the closeness of all those bodies, breathing all around me, made me feel very anxious. I don’t think I’ll be venturing out into the world again for a long time.

And anyway, too much of what little energy I have anymore is used up during these outings. The time for staying in, for making this house more like home, for resting, reflecting, and recuperating has arrived.

I’m starting right now, spending the evening on the couch wrapped in my comfiest blankets and watching President-elect Joe Biden and Vice President-elect Kamala Harris call for unity, peace, and healing throughout the country. It’s such a soothing and calming messages and gives me hope that even if compromises must be made over the next four years they will be made in an effort to move us all forward together because the truth is we are all Americans and so many of us have been left behind in so many ways and on both sides of the political aisle.