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.

Goals // Week 49

This week I have a lot to get done both at work and at home and of course it is the worst week for so many projects and goals. My health isn’t good and my emotional state is even shakier. So, I have to learn to prioritise, to see what is really important, and to let the rest go. This week I want to:

Advocate for myself. The symptoms of ulcerative colitis can be embarrassing to talk about which makes it hard to explain to people what my limitations are and why but I have to do it. I have to be clear about my needs and I have to stand firm when they try to guilt me into doing what at best will cause me more pain and ate worse cause me further embarrassment.

Update: It was hard, but I did it. I learned my lesson from the week before and asked for help, only did what way my work to do and delegated the rest. I even took a day off! I called the doctor too and made sure I got help from her and, most importantly, I didn’t allow myself not to do what I needed to for me either.

 Rest as much as possible. I have a busy scheduled ahead of me this week and if I want to have any hope of getting through it I have to take the time to rest when I can. I’ve got to lower my expectations. I’ve got to go to bed on time. I’ve got to stay home if I need to. It’s going to be hard. I always feel bad when I have to rest. I worry people will think I am lazy, lying, or weak, but I can’t worry about what people think anymore. If I don’t rest now, I will only be worse off later.

Update: I probably still worked more than I should have but when I got home at night I put myself on the couch with a heating pad, plenty of Gatorade, and a light dinner. I wasn’t able to get much cooking or cleaning in but that’s ok. Soon I will be back at it but for now, rest, rest, rest!

Not feel guilty for poor eating habits. Food doesn’t always make me feel better and I know that the longer I am in a flare the more avoidant of meals I will become. As long as I eat enough to take my medications and supplements on time and try my best to eat food with some nutritional value that will be good enough. I don’t have to do more and if I slip and do less it’s okay.

Update: I was hardly able to finish my meals and when the hunger and cravings came on I ate a lot of things that weren’t so easy on my gut. I could have done better, but it is hard and whenever we are fighting against ourselves mistakes are inevitable and laying on too much guilt won’t help. I messed up, but it’s ok. I messed up, but I’m doing better all the time.

Drink my coffee after I eat breakfast, if at all. I have to be easy on my belly now and filling it with acidic liquid and caffeine first thing in the morning is probably the worst thing I could be doing. I know if I quit cold turkey I’ll feel even cruddier so I’m going to slowly push back the time I drink it and then slowly lower the amount I drink. I love coffee but it has to become something of a treat more than a daily necessity.

Update: I sort of did this I sipped tiny amounts before breakfast a few days but almost every day I hardly had any coffee at all. In fact I blame the migraine from last Tuesday on a caffeine withdrawal.

Finish my resume. I’m running out of time, and excuses and the there will be no end to the depth of my disappointment if I do not finish this on time. I’m being given an opportunity though I’m not sure when exactly it will come. I only know that it will be soon. So I need to be ready now because soon can become now any minute and catch me unprepared. Get it done, now!

Update: I suck. I’m disappointed in myself but somehow that isn’t enough to change me. I will not fail though. I will not lose out because I refused to simply finish. I’m scared and I have to stop being scared that’s all there is to it.

This week I won’t ask too much of myself. I’m keeping the list short and leaving plenty of time for what I need to do and what I know I can do. This week I will sooth and forgive myself when things get hard or when I can’t complete a goal. I will keep my long-term health in mind and take care of myself first for the good of everyone.

P.S. For a look at how I fared last week check out my updated post for Week 48.

Photo by Matt Palmer on Unsplash

I can hardly believe a new month has started already. I hate December but I’m excited by it too. It’s the last step, the last struggle, before a new beginning, a new year filled with potential and surprise. I’m anxious to get through the end and ready, so, so ready for all that potential and surprise.

I wish I had been a better blogger in November for National Blog Posting Month but I think, having learned the lesson for the hundredth time now, blogging challenges just aren’t for me. I can’t commit and I am terrible at community interaction. I did find something else that looked promising and, of course, I found it too late. “NaNoDoMore” is a list of things that you aren’t meant to get through in a month. The challenge is to try something new. I like that and though the challenge is over, I’m thinking seriously of giving one or two items a go on my own.

I’m also thinking that it’s time I made blogging my secondary writing outlet and start using it to fuel a greater project and not as an end in itself. NaNoDoMore feels like it’s about more than blogging. It’s about being a writer and working to find a path to the kind of writing you want to do rather than spinning your wheels, doing the same things you have been doing, and getting nowhere. It’s a place to find, or rule out, a start. I’m going to need a lot more of that.