Just Thinking …

I often wonder how some people can “get away” with doing so little with their days … given that they are healthy, that is. I am sitting here and it feels like it has to be 2AM (it’s not even 7:30 the previous night), completely exhausted more or less from sleeping poorly (separate discussion) and just feeling unwell thanks to the combo of the Behcet’s acting up and the steroid taper.

With all of that said, I have realized that the “spoon theory” doesn’t quite hold up to one minor thing (I have my own “theory;” something I have “promo”ed forever and I promise I will get to!) – that is that there are days in which we “steal” “spoons” or energy or something out of thin air just because we have already run dry. This is where I started around 3:30 this afternoon; just … done. I had just finished my “weekly” SCIG (subcutaneous immunoglobulin) infusion and I was exhausted – again, after having slept poorly and the aforementioned Behcet’s / steroids combo. But I couldn’t go to bed. I had to eat something, I had to go buy water because I had none, I had to give meds to my cat and give him his dinner, I had to brush my teeth, &c. &c. – all while working with whatever extra “juice” might have been granted to me having shaken my “batteries” around a bit.

I am not saying that we can do this indefinitely or that we should push ourselves to do things because we CAN and HAVE TO at certain times – I guarantee that if you live life like that with a chronic “spoonie” sort of illness, you WILL crash and burn. However, I am just curious as to where it is really that we get this “energy.” I know when I get to that point where I just HAVE TO PUSH THROUGH ( those things might seem like nothing to the “average, healthy” person, but imagine doing them while you have the flu and you haven’t slept in a week). I certainly feel like death after I do such things (as would someone who hadn’t slept for a week and went out to do these things with a 104 fever and the flu!) and I barely have enough energy to pull of my compression “garments,” pull my hair down, and get to the next room to get in bed. But we do it. I do it.

Just a thought I had pop into my mind at the end of the night – oh, I did just get done doing dishes and loading / starting the dishwasher as well. THat’s a “have-to” because some of the people who live around me are questionable when it comes to their level of cleanliness and/or their ability to be “clean” … and I REALLY do not want vermin in my living space because I didn’t get the dishes done one night.

At any rate, I would love to hear from any of you who have been through this – what you think it is that gets you through when you have nothing left to give. And I do very much hope you are all having wonderfully happy and healthy days wherever you are in the world (and not dealing with these fingers that are barely able even to type at this point as well1)!

❤ Always, Beth

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