Journal – Page 37 – Lisa Marie Blair

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.

I’m home early from work today, thank God. The stress of trying to get though another day was getting to me and I simply decided not to deal with it at all and asked if anyone cared that I leave. Not one person objected.

I stayed long enough to get my work done and take care of a few commitments I’d made earlier in the week. I’m grateful that even though I’m still fighting this flare up the steroids have made the middle of the day bearable and even somewhat productive.

We had another luncheon at work. One of my bosses brought in homemade lasagna with salad, bread, and mini bundt cakes for each of us. After lunch we all pulled random $25 gift cards from a bag. I was lucky enough to pull the movie theater gift card, my wife and I’s favorite way to pass a Friday night.

Soon I’ll be heading out for some shopping. We’re seeing a play tomorrow (our first play together) and nothing I have to wear feels right. I want something new. Something to help me feel good and fight off the pain and depression of this flare up I’m going through. I’m determined not to let ulcerative colitis ruin this for me and that means treating and indulging myself to the max to get through it.

Happy Friday the 13th!

It’s felt like too much like Friday and throughout the morning I found myself suddenly down and disappointed in moments when I realized it was, in fact, only Thursday. The week continues to drag on.

At least it was a productive day. It’s been a long time since I had one of those. I worked on my first “Bradbury prompts” list and already have a little spark of an essay going around in my head. I wrote over 700 words of it so far, not necessarily good words and I wish there were more, but 700 is a lot more words than I have written outside of my usual posts here in weeks. For it being my first try, and for all the distraction I had to deal with, I’m very happy with the results and anxious to try it again tomorrow, and the day after, and for every day after that until, and if, it no longer works.

After all that writing I felt so good I had to get out into the sun. I went for a walk which turned out to be a bad idea and left me feeling a bit dehydrated and faint through the rest of the afternoon. I keep making the same mistake of pushing myself too far at the slightest sign of improvement and beginning to doubt I will ever change.

I’m stuck at home again. I don’t feel bad this time. I was up a lot last night and this morning I was in pain. There’s nothing I could have contributed like this.

Yesterday my doctor emailed to tell me the lab test had come back. We finally have proof of what I already knew, the inflammation is bad and I am not well. She asked how I was doing on the steroids so far (so-so) and asked me to check in with her in exactly one week. It’s a wait and see game now but it helps to have a healthcare team that follows up and at least appears to care. I have less anxiety knowing she’s just an email away when I need her.

I did make sure to rest more than the last time I took off but I couldn’t help a few cleaning projects and I did make time for a tiny bookbinding project. I needed a new notebook to start my “Bradbury prompts” list in. I needed something portable and ugly enough that I’d have no issues writing in it right away. I made a simple one out of an old manilla office envelope and some scrap graph paper I had lying around. I’ll post a picture later.

My boss’s retirement luncheon was today. We’ve all known he would be leaving for a long time now but the news is really hitting me emotionally today. He has been an amazing boss. The kind that gives you room to be the best employee you can. I wish more managers understood that trying to squeeze every drop of productivity and accountability only stifles passion and kills good ideas before they have a chance to develop.

If you make all of your employees feel important and treat even the lowest level workers as resources for radical solutions and change you can build a better team, department, and company than you could ever imagine.

If you have a boss like the kind I had, the kind that trusts you to do your best work, appreciate them and spread your wings while they will let you. I’m afraid of who will be the next head of our department and worried that I will be reined in and smothered again. Just imagining it exhausts me.

Today started out rough but slowly improved. I am grateful for coworkers who are also friends and who hold me to a higher standard, who support me while I struggle, and who make me laugh. After understanding laughter is the most important thing. Laughter makes you brave, makes you stronger than you knew, makes the hurt and the work so much less and the satisfaction so much more.

Class is still going on and I am still working long hours and still left with so little time for me. It’s ok though, that light at the end is getting closer and brighter by the day. I’ll make it.

This afternoon was hard but for entirely different reasons than the last few weeks have been. I heard some devastating news about a friend and it’s the kind of situation where my help is unwelcome. It isn’t my business or my problem and though I am emotionally invested in the outcome, my involvement will only make matters worse. All I can do is wait, and watch, and hope.

But I’m hurting too. Friendships are risky the same as romantic relationships. We open ourselves up. We let them in, and we have no guarantee that it will last. They can flit in and out, disrupt and damage, or leave you as broken-hearted as any lover. That isn’t to say in this situation I was hurt intentionally or that I have any right to be hurt at all, but I am all the same, and I simply needed somewhere to say that out loud.

The medication is working but not all the time, yet. I’m still in pain in the mornings and the evenings but the middle of the day is a glimpse of glorious normalcy.

Usually I’m nearly normal with in two days so the fact that things are still so bad is scaring me a little. The last two times I’ve tapered off of steroids I had to keep going back up because my body could not stay in remission. I have a feeling this will be the case. Behind every positive step is another fear.

Still, the small relief I feel is everything and I am trying to focus on that. I tried to write, but the day started so late that nothing more than my coffee post will go up and even that will be disappointingly late. I’m hopeful for the rest of the week though. I will make progress on all fronts.