July 11, 2020

Frustrations of Chronic Fatigue

One of the most frustrating and hardest things to deal with when you have chronic fatigue (and other chronic illnesses) is the constant cost-benefit analysis you have to do for every activity. And it's not always as simple as "am I super hungry and my blood sugar is low enough I might pass out?" then "yes, getting something to eat is worth the cost of the energy expended."

Because it might not be that easy. What does "getting something to eat" actually entail? Is it just grabbing something out of the fridge that can be eaten cold? Do I have to warm it up in the microwave? Does that mean I have to find a dish to warm it in? Does it need to be eaten with a fork or spoon? Do we have clean forks and spoons in the drawer? Will I have to dig through the dishwasher to find one? Are there even clean ones in the dishwasher? Or do I have to actually cook some food? How many steps does that involve? Do I have to wash a pot/pan to do the cooking because no one in the house has washed anything after using it? Will I have to go out to the garage to get ingredients from the freezer? Will I have to get on my hands and knees to find something in the lower cabinet? Will I have to climb on a chair to reach something in the upper cabinets? How long will it take to make this dish? How long will I be on my feet and walking around the kitchen?

Each one of those things will cost me in energy. And in the end, it might not be worth it despite being dangerously hungry. I'd rather just pass out from the low blood sugar (which would probably happen if I had to cook something anyway).

Every day, every activity, I have to do this.

Like today I was thinking it would be nice to go sit in the yard and maybe pull some weeds. I'd get some sunshine (I'm sure I'm low on vitamin D again) and at least feel useful. Initially, this sounds like an easy enough activity that will use little energy. I'll be sitting and will just pull what I can without putting in much effort. Just some digging in the dirt really.

But then I started to really analyze it. First, I'd have to get dressed. That means finding some clothes I can wear to get dirty because I don't have much that fits and if I get my one good pair of jeans dirty, I'll either not have anything clean to wear or I'll be forced to do laundry (high energy activity there). Once I got dressed, I'd also have to pull my hair up because it's hot outside. That means brushing it and finding a hair tie then actually getting it all straight. Then find a hat to wear so I'm not blinded by the sun. I also have to go down the stairs (ugh) and fill my water bottle because I'll need to stay hydrated.

Of course, my kids "cleaned" up the gardening stuff I had stashed in the dining room (where the patio door to the yard is at) so I have no idea where my gloves or other items are. I'd have to go dig through the garage to find them then drag them through the house because garage is in the front of the house, nowhere near the back yard. I'd have to get everything outside and get down on the ground and finally start to pull weeds.

As, you can see, there's a lot of energy spent just getting ready to do anything. If this was the spoon theory and I had five spoons to use on pulling weeds, I would have spent them all just getting dressed, fixing my hair, filling my water and finding my tools. There'd be nothing left to actually pull weeds. There's no point in even trying, so like most days, I just sit here.

Every activity is like this. I haven't taken a shower in over a week. Last time was before my doctor appointment on the 2nd. Showering is a super-high energy expending activity. A person without a chronic illness might laugh at that. Showering is a quick, simple thing that gets you clean and makes you feel invigorated and good and ready for the day. Not for me.

When I think of showering, there are so many steps. First, make sure all the stuff is in the shower (because my kids often take my shampoo or body wash or razors) which might mean hunting stuff down in the house. Gather towels and clean clothes which requires walking around my room and digging in drawers. Start the water. Get undressed. My hair requires two washes because by the time I do take a shower, it's super greasy and some conditioner. Then wash my body. And if I'm going through all of that, I'm going to shave so I feel clean and soft (my preference). I'm fat so shaving my legs takes forever and I have to do most of it by feel because I'm nearly blind without my glasses on. Then I have to use the pumice stone on my feet or they will be peeling and rough and catch on my sheets and ick. Then wash my face (if my kids have left me any face wash).

And once all that work is done, there's still drying my hair with the towel and drying my body with another towel. Then I need to use the q-tips in my hears because I hate the feeling of water in my ears. Then baby powder on certain areas or I feel sticky and gross. Then finally I can get dressed but that's an ordeal because I'm not fully dry yet so the clothes stick to my skin. Then brush my hair, hang up the towels, and finally, I can sit down.

Last week when I took that shower, I started wheezing in the middle of it and had to lean against the wall. I was just exhausted. By the time I got out, I just wanted to crawl in bed and take a nap for two hours.

Taking a shower pretty much means it is the only thing I do all day. It uses more energy reserves than cooking dinner or grocery shopping. It's is hands-down one of the most exhausting experiences. So I avoid it if I can. That sounds awful, but I just can't be bothered. I need to cut my hair again because when it's short, it's so much easier to just wash in the sink and then I can also just kind of wash my body in the sink as needed. And I can do each thing one at a time instead of being forced to do it all in the shower in one go.

So, yeah, even the simplest things end up costing me too much energy to be beneficial.

I often skip meals because the energy needed to prepare them isn't worth it. On top of the whole food makes me sleepy thing. Like my usual lunch is a small sandwich with a side salad. Sounds simple enough. Healthy. I was losing weight while eating that every day. But the energy expenditure was outrageous for me.

First, getting everything out of the fridge takes several trips. Then finding a clean plate and knives. Toasting the bread. Putting mayo on the bread. Layering the meat and cheese then getting the stupid packages to reseal (ugh). Cutting the tomato. Finding enough good lettuce leaves for the sandwich then tearing more up for the salad. Cutting more tomato for the salad. Cutting onion and green peppers for the salad. Finding a spoon to get some olives out of the jar. A little dressing. Then cutting the sandwich in half. Finally, putting everything back and cleaning up the inevitable mess I made.

And half the time before I can even start, I have to pick up all the dirty dishes and clean the counter off just so I have space to work. By the time I'm done, I'm exhausted and don't even want to eat. I'll take it upstairs where it will sit for ten or fifteen minutes until I've gathered enough energy to chew. And then the post-eating fatigue sets in and I regret eating at all.

And, yeah, I've tried preparing the salad in advance or making extras for the next day. With kids in the house, it just doesn't work. If I made a big salad, the girls will want to eat it. I've even tried making several small containers of salad marked with my name. The kids still ate them. That goes for any easy-to-make food I might buy to make my life a little easier. The kids will eat it all without telling me, leaving me with nothing.

I'm honestly just tired thinking about all the work it would take to do any of this stuff.

Story of my life.

Written by justanotherjen

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