And So It Goes…

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Isn’t he cute? He is super supportive and the reason I can take days off to recover in my pajamas. 

I am admonishing myself today because I am in my special soft pajamas and my softest sweater because I over did it yesterday. I did my yoga, my writing, and then I cleaned the kitchen and deep cleaned the refrigerator. I took out three trash bags from all the cleaning I did yesterday. I also washed the bathroom floor by hand because my hair just doesn’t come up with a mop. I was extremely excited when husband got home, but by the time we went to bed I could not move my head without groaning.

I am extremely lucky because my amazingly patient husband gave me a massage to loosen me up enough to go to sleep, but then this morning I woke up in full -just got hit by a mac truck- fibro mode. If you don’t have fibromyalgia I will remind you that it feels like when you have the flu, but you don’t vomit. You are sore all over, nauseous, and swollen in places. So basically it is like you have the flu but also got beat up last night. It’s a wonderful way to start the day, let me tell you.

So today I am sitting here watching Monday’s Dancing with the Stars and the fog in my head is coming and going. Right now, in a moment of mental clarity, I am wondering how long it will be before I learn my lesson. I want to manage my energy better. I feel like I make progress and then get excited and do too much. I get a little encouragement, and say I GOT THIS!!! I got this all the way to the couch. Dang it to hell. It is so frustrating. Now I have lost a whole day. I have lost an entire day to sitting around without any progress. I know I shouldn’t let it, but it pisses me off and makes me feel guilty. I know it shouldn’t but I keep going over where I went wrong and how I could have broken up tasks. Maybe I could have eaten better. Would that have made a difference? Should I have split up cleaning the fridge? Two shelves one day, the rest another? These are the questions I feel like all fibro people ask, am I wrong?

Managing your activities can be tedious. These are base activities that most humans have to do: cook, clean, walk, fold laundry. I have to dose them out like medicine. Too much medicine and I crash. Today is crash day.

Will I ever get it down? Will I ever learn? I doubt it. My mom has had fibromyalgia for years. At least once a month she is telling me about something she over did. This week she mowed the lawn and the next day her back hurt and she was out of commission. She hasn’t learned.

Also, hopefully my baseline for what I can do will improve if I keep working at it. I have to keep chipping at that line that I am not supposed to cross. I have to keep trying to move it forward. So, I guess that I will be having more days like this. By that logic, perhaps these days aren’t that bad.

I keep trying over and over to be more capable. I keep trying to push the limits of my abilities. That is a good thing. So maybe it was stupid to do too much too fast, to be excited when I feel good, and to fall for it again. This excitement (like look what I can do!) is contagious and insatiable sometimes. I want to feel normal, that is natural. I want to reach out to all those people with fibromyalgia and tell them not to feel bad when you make a mistake like this.

Fibromyalgia should be called baby steps. (Please excuse the What about Bob reference Bill Murray.) Baby steps to a clean kitchen, baby steps to a clean bathroom, baby steps to a vacuumed floor and baby steps to a rewarding life. I should make it a mantra. I should add it to my morning meditations so that I don’t forget.

It can be hard to always live a mindful life down to the most minute activity, but that is the new regime with fibromyalgia. I will always struggle with being guilty because I’ve done too much. As a fat person, I’ve always felt guilty for not doing enough, for not loving exercise. Now in my forties I am finally loving exercise and I have to put a cap on it. I struggle not to feel guilty at all anymore because it helps no one. If you have fibro or some other chronic illness, or even if you don’t – how do you stop the guilt train? It has to stop. It helps no one. How do you stop the guilt train? We have to put an end to it for our collective health. We have to band together and be encouraging to ourselves. Not just because guilt, shame, and stress can cause not just mental anguish but physical pain in fibromyalgia. I don’t think those things are good for any human.

In addendum: My husband read this before posting. He said that it would probably help for caregivers and spouses to read this. He said it helped understand better. I know if you have fibro you understand this push and pull with your abilities, but maybe your partners don’t. My husband is truly the greatest husband in all of the world. He dotes on my like I am his “precious.” So, if he is still figuring it out then I am guessing education is needed for more partners in this world. I hope this that this essay helps, but I would also recommend: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

4 thoughts on “And So It Goes…

  1. the push and pull is a constant game against my mental and physical state to get things done. I do feel a little for the rest day but it is necessary. I try to make rest productive too by identifying it as time spent reading or learning something and investing in relationships which is critical and invaluable

    1. Days off are crucial!! I think you’re right that reading, learning, and socializing can be restorative. It is good to do those things and it make me feel like I’ve done something to further myself and my goals. I also allow myself dumb days where my fogginess is in full gear. Those days I don’t feel bad about netflixing too…Lol

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