Why Planning Ahead is Hard with an Autoimmune Condition

Today, I am supposed to run a live learning space for my job (planned last week) and meet a friend I met online in 2022 for the first time for coffee (planned yesterday). Both events, I am lucky enough to desperately love and want to do.

I am sitting with my face in my hands, trying not to cry so I don’t screw up my learning space makeup.

I am so tired I can barely move. For no reason.

Yesterday, I did 10 minute of light yoga. I actually ate a balanced breakfast instead of no breakfast at all. I took a shower. I went on walks with my dogs. I went to bed early. I didn’t drink. I did all the self-care stuff I’m supposed to do.

And then I woke up in the middle of the night with random swelling in all of my muscles and pain that was so awful I took four ibuprofen, something I try really hard not to do. I went right back to sleep. FitBit says I have a sleep score of 80+.

Existing takes so much energy that I simply do not have.

This is making it so utterly miserable to make plans. I don’t look forward to anything. I thought about it yesterday, and I think I used to–look forward to things.

I realize today why I hate making plans: I never know how I will feel in the future. I never know if I will have to cancel, or if I will have grit my teeth and force myself through it in the name of being a good friend, a good daughter, a good ally, a good person.

Only to collapse after.

I only know how I feel right now.

Tomorrow is never guaranteed, and history says the future, whatever it is and no matter how excited I am for something, is likely to be miserable in some capacity.

I can do everything right and still be a barely-functioning shell of a human being because at any given moment, I can have a Hashimoto’s flare and have no energy to do the things I love or even the things that I have to do.

Maybe I simply won’t make plans going forward. That would probably be what’s best for my mental health. Possibly physical too. Last-minute everything.

…Except I kind of need to stay employed, so. Some concessions will have to be made.

So, here I am. Writing down my three daily gratitudes. Trying to focus on the positives. What else can I do?

I suppose I’m grateful that I still can do these things. Even though they hurt. Even though they are sticky with exhaustion.

In retrospect, I’m not sure if this is a flare, or if I’m actually getting sick. Guess I’ll find out!

7 responses to “Why Planning Ahead is Hard with an Autoimmune Condition”

  1. I relate to this so much, Sarah 😦 I had a flex day yesterday, and I cleaned our balcony, which took me almost 3 hours and ran some errands. I’m on call today and I’m fighting pain everywhere and terrible mental fog. It’s not like I did something extraordinary yesterday, I ate well and slept 8:30 hours. I like to be reliable, but planning doesn’t work for me either, so I mostly say no to most social activities. Today I’m pulling through the best I can because this is work, but I won’t do anything else useful today. Because I can’t.

    Liked by 1 person

    1. -hug- That is so rough! I hate doing the cost-benefit analysis of basic life chores. If you clean the balcony (or lanai in our case), will you pay for it later? What’s more important, a clean home space or being able to function? And then it’s always just luck. You know you’re rolling the dice on tomorrow when you push it today.

      You only have to do today once. I hope tomorrow, you find ease and energy!

      Thinking of you today.

      Liked by 1 person

      1. Yes, every day feels like rolling the dice. We usually have someone coming once a week to clean our apartment because, I can’t be like this on a weekly basis, apart from the rest of the things that happen in my life, but the balcony had been neglected for a while.

        Hugs to you too, Sarah. This condition isn’t well understood by people not suffering from it. I’m sorry that you’re going through similar things, but I find some kind of comfort in having someone to talk to about it.

        Liked by 1 person

        1. I do the same thing re: house cleaning. Our lanai was a MESS until last weekend.

          I am happy to chat any time. You’re not alone!

          Liked by 1 person

  2. Thank you, Sarah. Likewise. Hugs 🙂

    Like

  3. Completely relate to this and hope you’re feeling better. Not sure where you are in the world, but it’s so hot here in England (for once!) and I think heat makes autoimmune fatigue much worse, right?!

    It’s so important to surround yourself with people who don’t judge us when we do have to cancel last minute – judgement adds to the stress and pain of it all.

    Sending thoughts and positive vibes ❤️

    Liked by 1 person

    1. I hear you! I live in Florida; funny enough, Hashimoto’s makes me cold intolerant, so I’m okay with the heat. I hope you are taking the time you need for rest! Hugs from the North American side of the pond.

      Some of it is the stress of simply letting go of societal expectations. I hate being rude, but also my wellness needs to take priority. Thank you for this comment!

      Liked by 1 person

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