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The weight of my chronic illness is pressing on me, exhausting and depressing me. I can’t move, see, or think past my body today. Just recently I was feeling so proud of this body. I was beginning to not just consider it part of me but to love it a little too. Today though it is nothing but meat and misery I’m forced to drag around and long to be rid of.

I always feel like this on the day’s I have a doctor’s appointment. Today’s was both good news and bad. We’ve settled on a plan that goes past “wait and see”. I’ve waited and though what we have seen has been an improvement, it has been far too slow and too little to consider it a success. So, a little more wait but in the meantime there is will at least be actions to take.

This new plan is better than the one proposed to me a few weeks ago though it means some big changes. I’ll be back on an infusion medication and there will be a lot more wait and see to come. There are a lot of unknowns on the horizon too. Medication that may or may not work, side effects that may or may not manifest, and old symptoms that may or may not resurface. It’s a lot to worry about, and especially hard not to think about when you are supposed to be managing your stress levels.

I’m trying to remember that I am one of the lucky ones. I have support. I have healthcare. I can work. My condition is manageable. I will get through it and it will be okay.

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It’s the first official day back at work since the break and it’s turning out to be a lot harder to get through than I anticipated. The morning was fine, but I made sure to keep as close to my regular waking time and routine for most of the last two weeks.

No, today it is the afternoon that is exhausting me. I have been spoiled and gotten too used to freedom and control. My body and mind believe I should be at home resting or doing something more enjoyable or fulfilling rather than stressing or dreading the next 3 hours of my afternoon.

Still, I think I am coping well. I was needed more than I thought I would be and though that really cut into the time I hoped to spend on myself it felt good to be able to work. My health is improving and I can feel the difference in energy and confidence since I started working out and moving my body more. I feel sore but strong, tired but in a good way. Suddenly existing as a physical being is no longer a drag.


I’m home late from work, avoiding my to-do list and eating food I know is bad for me as a result. I don’t cope well when plans change it seems. I have to give myself permission to shut down here and there though. It’s the only way I can pull myself back up and begin again the next day. I have to be able to tell myself “Today this is ok, but tomorrow it is not.”