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.
This week I have a lot to get done, again, but not as much as last week. The new class of employees is just about done and by midweek I should start seeing more time for myself and I just hope to have the energy, the mental resources, and the emotional stability to focus on what is important when that time comes along.
This week I will:
Read 100 pages of The Plague by Albert Camus. Last week I didn’t get any reading done at all and while I already know I will fall far short of my reading goals for the year, I had hoped to end with at least two more books under my belt. So, this week I have to get back to it. I don’t think 20 pages a day is too much to ask of myself.
Update: I made it just over half way which was better than nothing so I won’t be too hard on myself. I just have so little energy right now that reading has become a chore. I’m actually really missing it and hoping that paring a cup of black or green tea with my reading time going forward will help perk me up and get me through the pages.
Stay on top of my meal and medication schedule. Between medications and supplements I’m up to at least 17 pills a day. Some of them have to be taken with food, some 30 minutes before I eat, and some make me so nauseous that they have to be spaced out as much as possible front the others. That means I can’t miss a meal, or eat too late, or forget a pill or I end up feeling cruddy or slipping back down hill. My health has to be the top priority now.
Update: I only missed one evening dose of my medication and between 17 pills and having to break my meals up into four a day rather than three I think that’s pretty good. I made some small tweaks to the schedule and wrote it down to keep with me so I won’t forget what to take when. Just 7 more weeks to go like this.
Begin my own list of what I have started calling “Bradbury prompts“. These are simple words or phrases pulled from the mind without too much forethought to kick start blog posts and essays. The list is the first step in the Ray Bradbury WORK RELAX DON’T THINK system. I’m looking for patterns, for concept groups, for my motivation and possibly a project.
Update: I did “start” but I failed to keep going. I did enjoy the exercise very much and saw immediately how it could save me time and help me start writing when I don’t know where to begin. Going forward I really want to make this something I schedule and do every day and follow the list up with 1000+ words toward an essay or blog post based on what pops out of my head and into the list.
Get the Christmas shopping finished for our out-of-town people. December is slipping away quickly and before you know it, the last day for gifts to arrive before Christmas will be long passed. I’m sending to small children and I cannot have them disappointed in on Christmas day when there is nothing from Auntie Lisa under the tree.
Update: I did “start” but I failed to keep going. I did enjoy the exercise very much and saw immediately how it could save me time and help me start writing when I don’t know where to begin. Going forward I really want to make this something I schedule and do every day and follow the list up with 1000+ words toward an essay or blog post based on what pops out of my head and into the list.
Finish my resume! There is a new opportunity coming up very quickly that I know I would be perfect for and I want to be ready but I am procrastinating, badly. I have started but I haven’t finished and half finished means nothing at all. This opportunity was made for me and I have only to be brave enough to reach out and seize it.
Update: I don’t even want to talk about it. I failed miserably to finish it and rather than let myself down again I have taken it off of my list for next week and pledged to revisit the document at home during my winter break. I’ve already added it as an even in my calendar and turned on multiple notifications with note proclaiming “No excuses!”
This week I—hopefully—will slowly be returning to my old self. The temptation will be to overdo it. I’ll want to eat foods I know I can’t eat, to do things that I know I can’t do, and to push myself too far too soon. The danger now is losing progress. This week I have to listen to my body over the needs of anyone else.
P.S. For a look at how I fared last week check out my updated post for Week 49.
Hello and happy Sunday! Thanks for stopping by for a bit of conversation and catching up over a cup of delicious coffee.
It’s late, I know. I stayed up too late binge-watching mindless T.V. and eating too many snacks. I normally don’t don’t do that on the weekends. I love to stay up but I know that I never deal very well with circadian disruptions in the morning. I don’t deal well with mornings in general! But the more sleep I get the better. And the truth is I’m not gettig any younger and though the mornings are getting harder all the time I am learning how valuable they really are. These late starts only mean less time in the light and already I can see the sun going down.
At least the air outside is still warm and I can have the windows open. I can hear the snow that is still melting from our last storm dripping off of rooftops and splashing in the streets. Autumn here is always more like winter but on the mild days I like to pretend spring has arrived early.
So, please, pull up a chair and grab yourself a cup. I have the usual: hot coffee from the French press but I have returned to soy milk from almond. I missed the silky texture it gave my coffee too much. Let’s talk about last week.
“You may think a morning coffee is the most enjoyable thing in the world, but it’s really just a habit.”
― Julien Smith, The Flinch
If we were having coffee, I would tell you that I know I have been going on and on here about how poorly I have been feeling. I thought about taking a break from this blog but it’s all I have right now that is both all mine and doesn’t ask too much from me. It’s all I have that is mine and I that I also have the energy for and even if it becomes a place for me to dump my complaints and my sadness, that is what it will have to be, for now.
So, I have been feeling poorly. My ulcerative colitis symptoms have been creeping on for a few weeks now but this week my symptoms have escalated quickly. I struggled at work, and worse, I struggled at home too. My greatest fear with this disease is impacted my wife and our home.
Of course, some impact can’t be helped when I’m exhausted and in pain and hating my own body for failing me so spectacularly but I’m trying to minimize it. I try to protect a little of what is good in me, to carry some small positivity and enthusiasm through the day to give to her when we get home so she isn’t left with a shell of a person, or worse, all of my misery.
The good news is that I have talked with the doctor and we have a plan. I’m back on steroids which is both awful and terrific at the same time. The side effects can be harsh over time and I have already done so many rounds in the last few years that the long-term effects will begin to pile but I know I will start feeling better soon. I’m going to set up an appointment to speak with my doctor over the phone in two weeks so we can work out what the next steps are. The hope is that I can’t get myself back into remission and stay there with the same maintenance medication I’ve been on, but I have my doubts.
If we were having coffee, I would tell you that work this week was hard and not just because of how sickly I’m feeling but because I’m teaching a class of new employees again. I love teaching so much but trying always to be a good teacher is hard. What I teach is small, but it is important and I strive to take is seriously. I learn from each person I teach. I learn a new way that people learn and a new way to help people learn in a way that works for them.
This week I learned how to better explain to people why perfectionism is the worst thing while learning and while testing. I always tell them this but I have never been able to explain the why of it. Why shouldn’t they try so hard? Why shouldn’t they strive to be perfect? But this week I tested a woman who was so enthusiastic and who was doing so well but then, midway through her test, she made a mistake. It was such an understandable mistake and of course she would be given the opportunity to try again, but all she could think about was the failure and I saw the life, the enthusiasm, drain right out of her.
I’ve seen it so many times but never this obviously. People make a mistake and they stop trying. They can’t see what I see, the potential. They can see that these facts and demonstrations we demand of them are not what we are really looking for. What we are looking for is the enthusiasm, the resilience, the strength to bounce back because this isn’t about them, it’s about the kids. So, I told the woman what I saw happening in her after her failure and then she saw it, and she changed it, and now I know how to tell people why perfect is the enemy of good.
If we were having coffee, I would tell you that this week will be hard too but most of my training is done and I have my meds now so I think it will at least be an easier week than the last. By midweek there should be some time for me to make my own. I’m looking forward to that. I’m looking forward to reading something and to beginning a new kind of writing journey.
I cannot get Ray Bradbury out of my mind. I’ve been hearing him say WORK RELAX DON’T THINK and I have also been rolling around a part of his process that might just be the jump start I need to get from where I am to where I want to be next. It’s nothing big. In fact it’s so small and so simple that I have serious doubts it will work but I have a weird feeling too that it might at least help. I’m going to make a list, a giant list of words and phrases that I want to expand into a body of work. Essay titles, perhaps, or poetry prompts, or maybe even, someday, book chapters.
This is the task I am setting myself for December to open a spiral notebook (this has to be done long hand) and just start listing whatever pops into my head and I will keep on listing and when it’s time to WORK, I will RELAX because I won’t have to THINK so hard. I’ll let the list and my subconscious lead me to myself and you.
If we were having coffee, I would tell you that it is very late now and though I have so much more I want to tell you, and to be honest I’m not very tired anyway, but if I want to have any hope of a decent start to the morning and the work week, I have to go now.
I hope you had a good week. I hope that wherever you are it still feels more like autumn than it does winter. I hope that your holiday shopping season is off to a good start and that the beginning of the end of the year found you in peace.
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.
My wife tricked me into getting out of the house today. I threw some clothes on early in the morning to run to the pharmacy. She drove, and it was only after we left she said we were also going to go do a little shopping. At first I was angry. I don’t feel well at all and had planned on going back to bed after the pharmacy trip but I know she was trying to do something nice and anyway, it is a beautiful day and perhaps a little sunshine and a little time among the people, could help.
By the time we were browsing the stores I was feeling better. I got a coffee and a few more gift purchases crossed off of my list. It’s crazy how fast time is moving and how little time I have left to ship it all. It’s hard not to panic. I’ll give myself this last week to finish it all up.
Now we are back home and it’s early enough for me to still get plenty of resting done, or writing, or, more likely, housework, or, even more likely, shows to binge watch. The weekends aren’t long enough. I need a day between Saturday and Sunday, or between Friday and Saturday, a day to do nothing at all without any guilt. Tomorrow will be used up on preparation and then I will be back at it, struggling and miserable. Right now a four-day work week sounds like heaven.
The work week is finally come to an end. I’m exhausted and looking forward to doing as little as possible for the next two days. Since I’ll be starting a new round of steroid treatment to get this flare under control, I have got to give the medication the best chance to work and my body the best chance to heal before the start of another Monday.
But today was good actually. Even though I haven’t been feeling any better until now I believe I am learning to cope with it better. I’m learning how to work and to laugh between the pain and the fatigue. It’s good, but it somehow makes the whole thing sadder too. It isn’t fair I should have to fight so hard and it hurts that I’m the only one who knows the toll this is taking. I suppose it’s just lonely.
Right now the most important thing is that the work is getting done and I can end the week with a little pride, a feeling I’m in desperate need of these days.
I was feeling much better than yesterday when I woke up this morning. I was able to make it into work on time and ready to get back to it. I had energy. I wasn’t in pain. I did my best work. I laughed. I nearly forgot I was sick until after lunch when all my symptoms returned, with a vengeance.
I did get ahold of my doctor though. Thank God for her! She’s already ordered more lab tests and as long as they come back negative for infections than I will have a new prescription by tomorrow afternoon and some relief—hopefully!—by next Monday! There is light at the end of this hellish tunnel I just can’t tell how far away the light is, that’s all.
Soon I’ll get back to being me. I can’t believe I took it for granted, again. Never, never, never again. This time I will not let myself slip into such gross complacency. I will be me again for as long as I can, again. I promise.
I can’t do it today. I just can’t. I woke up this morning still feeling exhausted and just the thought of repeating the stress of yesterday was more than I could handle. So, I’m staying home today and you know what? I feel a hell of a lot better without the weight of the outside world on me. I may be feeling down and sickly but here in my own home all alone it isn’t so bad.
I should have spent the day resting, or even writing if I really wanted to get something done but instead I cleaned the house. Cleaning, after all, is the most satisfying kind of procrastination and I had hours and hours for it today. What makes it so insidious is how hard it is to regret. How can I feel bad when everything around me is so organized now? It’s a space clear enough to think in, to write in, but now I’m too tired.
And tonight I’m miserable again and tomorrow I will be too but I have to go back to work. Resting time is over and I wasted it, but for now the house is clean, my wife is home, and having at least that means everything.
I’m doing better than yesterday but I’m still not okay. I’m teaching a class this week and thank God I’m not on my own. I’m toughing it out as much as I can and looking forward to leaving as soon as I can. I wish everyone around me knew how hard I was trying. It feels good to give my all, to know that I can fight through this disease, but it doesn’t feel very good that I have to; you know?
It wouldn’t be so bad but my schedule is relentless right now and I feel bad for not doing my best work, or, I’m afraid I’m not doing my best work. I’m also in desperate need of some time for myself, to do the things that make me feel better. I don’t know if I mean that. I think I’m in desperate need of the desire to do the things that make me feel better. Right now the only desire I feel is for sleep.
Today has not been a good day. I wanted to stay home but calling in on Mondays makes me feel even more guilty than calling in any other day so against my gut instinct I dragged myself in. I was miserable and stressed the entire time. I’m still so sick and getting worse all the time and being sent out on a route is the last thing I need.
I learned a valuable lesson today though. I learned that I need to be firm about what I need and what I cannot do no matter what. I felt bad, and I let my boss guilt me into work I knew I couldn’t do and I may have made myself worse as a result. I learned that no one will put me first except me and I learned that that advocating for myself is one of the hardest things to do but it’s the most important thing right now.
Luckily my leave has all been approved now and for the rest of the year taking a day off, even if I feel bad, my job will not be impacted.
Read 100 pages of 
Stay on top of my meal and medication schedule. Between medications and supplements I’m up to at least 17 pills a day. Some of them have to be taken with food, some 30 minutes before I eat, and some make me so nauseous that they have to be spaced out as much as possible front the others. That means I can’t miss a meal, or eat too late, or forget a pill or I end up feeling cruddy or slipping back down hill. My health has to be the top priority now.
Lisa Marie Blair 