Category: Journal

This morning started out slow. I didn’t get the best night’s sleep last night and part of me tried to negotiate me out of going into work but I knew if I just fought through it, faked it until I made it, and focused on how good I would feel after going in, doing what need to be done, and then starting the weekend guilt free, I would be just fine.

Since then I have alternated work with writing, stayed hydrated, kept moving, and consumed copious amounts of coffee. I’m feeling good at the moment and savoring every second.

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The good feeling didn’t last long. I crashed hard as the caffeine wore off and after lunch my poor body could take no more. I slept for over an hour on the couch. I needed it though and now I feel rested and ready again to venture back out into the world.

Tonight is date night. We have movie gift cards to spend from the holidays and I have been waiting a long time to see the Uncut Gems. I’ve loved every movie I have seen from A24 and from the trailer it looks like Adam Sandler plays the hell out of this lead role.

The temperatures have plummeted outside and I can see fog forming around us under the streetlights. It will start snowing soon but no one seems to mind. The streets are still packed and the first restaurant we tried had a line too long for us to wait. It’s ok though. One of our favorite restaurants moved even closer to the movie theater, just a block’s worth of walking away.

We’re having bar bites and wine for dinner and for dessert we’re looking at the holiday cocktail menu and an order of churros to share. It’s going to be a frigid walk back the car in a few hours but for now, winter is nice.

I’m back at work bright and early this morning. I wasn’t sure I was going to make it since my body was slow to cope and cooperate. I was up some overnight dealing with pain and discomfort but after such a heavy meal last night and a lower dose of steroids I really thought I’d be much, much worse off.

I’m learning to consider it a good thing when my body wakes me up so early these days. I’m learning to listen when my body says it needs more time to move more slowly in. Since accepting this I’ve had a much easier time of things.

I wanted to take the day off, or better yet the entire two weeks, the same as everyone else, but I have work and money to make up so here I am. At least the work is easy and for the most part I’m being left alone. I can make time for my own personal pursuits in between tasks and since I have even less scheduled to get done tomorrow, the option is open to start the weekend early if I choose to.

I’ve gotten up before the sunrise without an alarm or threat of a work every morning since last Friday now. I miss the feeling of luxury that comes with sleeping in but having the house to myself and a few extra hours to create in have been really nice too.

It’s Christmas Eve today and even though I was able to muster up the holiday spirit just in time, holding on to it is proving difficult. I’m just so tired and still dealing with the pain and frustration of chronic illness. At least I will get some time to rest before our celebrations begin later. I’m hoping that through enough medication, napping, and caffeine I’ll be able to hold on to all that cheer through the next couple of days.

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My wife made a nice breakfast with homemade biscuits, eggs, and bacon. We watched a few Christmas movies and around midmorning fell asleep together with the dog and the cat on the couch. It’s been a long time since I’ve napped so peacefully. Another luxury.

We spent the evening with my in-laws eating too much Italian food and drinking too much wine. I broke my promise to myself and over did everything. My stomach has been protesting for hours. It was a good time though and I don’t regret a thing. I loved our gifts and I think our gifts for others were well liked and appreciated. I’m almost sad that the holiday is nearly over, almost. There was so much more I wanted to do and give, that’s all, though I supposed the time for doing and giving doesn’t have to end with Christmas, does it?

I can hardly believe it’s Monday already, just two days until Christmas, and just over a week until the new year. My wife and I have just a few small odds and ends left to buy, a couple of small gifts but mostly food and drinks. There’s bacon and eggs for Christmas Eve breakfast, salad, wine, and dessert for Christmas Eve dinner, sausage and mimosas for Christmas brunch, and we’ve settled on lamb for Christmas dinner.

Had a chat with the doctor this morning. It wasn’t great news, but it wasn’t the worst conversation you could have with a doctor either. She’s doing her best and just asking me to hang in there. She’s talking about adding more medications and the one’s she’s mentioned seem to have some very harsh side effects. I’m scared and, to be honest, angry. I’m not angry at the doctor and I know it’s wrong to be angry at myself, but I’m angry all the same. I just don’t know where to point the emotion or how to express or how to let it go.

I probably need time. I need to process. Thank God for my support groups. I’m never alone there. I can search for others going through what I am. I can distract myself from my problems by reading about problems different from my own. I can even uplift myself by offering advice to those in need. That is when I feel the best, when I am helping. My holiday isn’t what I hoped it would be, but I’ve still been able to find the spirit.

Today the exact opposite of yesterday.

I felt good yesterday, like myself. I had energy, optimism, and willingness to get things done but, of course, I can’t help over exerting myself the moment I get a drop of energy or feel a single second of relief from my symptoms.

Mentally I’m doing okay. I woke up in a good mood. I woke up with wants and plans and big ideas about how the day would go but none if it is coming to anything real. I’m stuck on the couch, stuck on the heating pad, stuck in this body and I have a feeling the body will soon drag the mind down too. It’s getting harder to concentrate and to not simply let myself sleep because it’s easier.

Today was a good day. My wife and I met some friends at new place for brunch where we ate too much, drank too much, and laughed until our sides hurt. The weather was gorgeous. It was like we were back in September again enjoying the first signs of fall. We left the restaurant giddy and giggling and explored some shops nearby. Until it was time for my wife and I to leave the group and finish our Christmas shopping closer to home.

Of course I never can shop for others without getting a little something for myself. THe local plant and lawn care was having a sale, so I got some evergreen candles, a few new air plants for, and a small white hypoestes phyllostachya for my now vacant terrarium.

I felt good for probably 80% of the day which is a significant increase from just last week where I was happy to get just 50-60%. I’m looking forward to days when I can say I feel great and can be present and useful 100% of the time.

For now, we are home and the truth is I overdid it both last night and today. I’m so exhausted I’m in a bad mood and all my pains are slowly returning. My stomach, my head, my hips and back, all hurt and there isn’t much I can do but put myself to bed but I loath to do it. I hate how much I need to sleep as much as all my other symptoms. I hate missing out on life. So, I’ll do what I know I shouldn’t and wrestle another hour or two from the day.

I know, I know, but I can’t bear to give up any more of my life to chronic illness right now.

Today did not start out as well as yesterday but it’s all my own fault. I didn’t stick to my dietary restrictions and paid the price all night. I was up early all right but unable to be productive or even useful. So, I opted to start my winter break a little early and stay home to rest and think about how I can better learn to control my cravings and do what is best for me in the long run rather than what is satisfying right now.

I feel very guilty about it though. I hate to call in on either Mondays or Fridays. I know that’s when I am needed most. At the same time I have a suspicion that I am overestimating my value and the more likely I’m neither missed nor missing much at all.

The day spent updating my Ko-fi page and tweaking the look of Zen and Pi but very little in the way of real writing got done. I tried to pull a few words out of myself but my mind is a wasteland and there isn’t much more it’s good for now than dragging around the lethargic meat bag I’m calling a body these days. I’m being dramatic, I know. Maybe I’ll go and let myself succumb to what my body is so desperately telling me it needs: a good long nap.

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I’ve had a good sleep and I’m feeling better, more energized, more myself. I’m meeting my wife and her coworkers for drinks and afterward we’re seeing Star Wars: The Rise of Skywalker. I’ve been looking forward to this for a month now and I won’t let a little chronic illness or a poor attitude get in the way of enjoying it. Time to snap out of it.

I got an early start this morning thanks to discomfort and chronic illness. I decided rather than letting it get the best of me, to keep me in bed or to keep me down, to let it bring out my best. I figured if I wasn’t going to get any more sleep anyway I might as well get a move on, right?

I think I may start my mornings this way for a long while. Just having an extra 30 minutes meant I was able to slow my pace and make room to eat early, sit with a heating pad, and enjoy my shower and those few small changes made a huge difference in the day. My body may be falling apart but emotionally I’m doing better than I have all week.

Part of the positive perspective might come from the act of fighting through every day rather than despite it. Getting up daily, beating what you thought was your best, and even retreating strategically when necessary all feel like wins and looking at life from that angle, lately, I’ve been rather triumphant.

So, while yesterday was a day of rest and processing, today is a day of doing what I can while I can. I’m back up to higher doses of steroids and taking full advantage of the positive side effects. I’m even adding a half a cup of coffee to boost concentration. I’m catching up at work and making progress on the end of the year blog post drafts I started on Tuesday. I’m looking forward to the evening when I will be back home with my wife and with, for the first time this week, nowhere else I have to be.

I’m back at work and feeling very conflicted about it. I’m feeling better than yesterday but I really wish I could rest for a substantial stretch of time without the guilt and the lost wages. But as far as work days typically go, this one, despite the physical and mental impact of chronic illness, isn’t so bad.

I’ve contacted my doctor and we are going to lengthen the time that I am on the steroids in order to give me the best chance to recover right now. I’m not happy about it, steroids come with devastating long-term effects, but I’m not happy with the way the way things have been improving (or not) up until now either. Something has got to give. Something has got to change. A sacrifice must be made.

For now, for today at least, I’m giving myself what I need most—time to process. I have a long lunch ahead of me, the impeachment hearings playing through my headphones, and magazines to make cut out poems of. It’s still a good day.

I had to stay home again today. I feel pretty crappy but the bigger issue now is the sheer exhaustion weighing me down. I feel like I have had the flu for a month but worse. From what I understand living with an autoimmune disease means my body thinks it’s been fighting the good fight against an infection while it’s only been fighting itself.

I slept most of the morning. I had hoped to get up and get some reading or blog things done but coffee wasn’t sitting well and since I’m still not eating much and I suspect that I may be sliding into dehydration despite all the Gatorade and broth I have been consuming I thought it best to give into the fatigue. After a light lunch and a few more sips of coffee I was able to start a draft or three and to make some theme edits. I read for an hour but my concentration and comprehension were lacking.

Tomorrow I will email the doctor to check in. Hopefully she’ll have some piece of advice or something to try. I can’t keep this up much longer. More and more I’m tempted to forego the work I have scheduled for the break and take care of myself full time instead.

The clouds and bitter cold has returned today. I nearly forgot winter was so close with all the mild weather we’ve been having. I dared to believe we might float on through the new year right into springtime with nothing but 40 and 50 degree temperatures and clear skies. I miss that blissful ignorance.

For a Monday the morning went by quickly but the afternoon feels nearly at a standstill. I blame the meds. Steroids and coffee together in the morning are a potent mix but the crash is unpredictable, sudden, and harsh. I spent my work hours after lunch doing menial tasks with the lights low in the office trying not to fall asleep and not to bring on a headache with the effort.

I’m home now, slightly earlier than usual and dreading the evening to come. There is still more Christmas shopping to do and I’m already so exhausted I know it will take a lot out of me to get it done. Still, it’s important, and honestly the ability to buy so much for so many is a privilege.

I’m looking forward the feeling that comes with having it done and the joy I know giving will bring to others. There is good that comes in the effort and more to be found in the season if you look for it.

Today was a gloriously long day. Usually Sundays fly by. I usually get up too late, have too much to do, and spend too much time dreading the work week to come, but this Sunday was the opposite of all that.

I got up early and stayed active and mindful for most of the day. I got all the cleaning things done before dinner and made time for blog things and for listening to podcasts too. I debated taking a nap, but I didn’t want to lose this good feeling. Naps can go either way, you know? They can make you feel better or worse and since I felt so good I knew chances were high I’d wake up grouchy, groggy, and most likely hungry and suffering from a headache. So I stayed up and did more stuff instead and now the house looks, feels, and smells wonderful and I feel good about myself.

It’s hard to say what has changed in me exactly but last night, after my wife woke me from the couch to put me to bed and before I drifted off to sleep again, I had a good cry over everything that has been going on.

I’m sick and tired of being sick and tired as they say and feeling weak and pitiful. I want very badly to feel strong again and I want to learn to cope better until then. I lamented to my wife about all of this and she simply reminded me that what I am going through is actually pretty serious and that everything I feel is perfectly reasonable. That broke my in the best way possible and, I believe, gave me a more accepting perspective on the situation.

I’m doing just fine, great actually, and that’s all I need to feel or focus on right now.

The play was amazing! My wife had never seen nor read Shakespear’s Twelfth Night so I was worried over whether or not she would enjoy it but she loved it too. The theater itself was really neat. The stage was set in a hexagonal shape and surrounded by seats on all sides rather than being in the front of the room. The stage shape and the fact that we had front row seats meant we felt right in the middle of the action. I already can’t wait to see another show there!

Afterward we treated ourselves to sweet treats from the natural grocery store and ate too many with tea when we got home. I’m tired now and dozing off on the couch while I write this even though it’s over an hour before my usual bedtime. This flare up didn’t ruin my day but it’s rearing it’s ugly head tonight in the form of extreme fatigue. I suppose in the scheme of the last two weeks it could be so much worse. I’m grateful for only tired.