June 29, 2020

Daily Life With Chronic Illnesses

A typical day for me:

9am - I usually get up around this time because I really have to go to the bathroom. I stumble into the bathroom with my phone and try to wake up.

9:10am - I make my bed (meaning I straighten the blankets) then stumble to my chair where I usually spend most of my day and start my laptop while I continue to check games on my phone because I'm not fully awake yet.

10am - I might finally go downstairs to start the coffee pot. On a good day, I'll empty and fill the dishwasher. If I know I don't have the energy for both, I don't bother trying to even unload it. I might gather some of the dishes from the other counters while I wait for the coffee to brew.

10:10am - I let the cats in before stumble back up the stairs with my coffee (my cup holds about 22oz) and collapse into my chair feeling really worn down. I stare at the computer without really comprehending anything I'm reading.

11m - My alarm goes off reminding me to take my blood pressure pills.

12pm - I still haven't done anything but now my stomach is grumbling so I need to eat. I go downstairs and stare into the fridge for five minutes because anything there is to eat needs to be cooked and I'm not sure I have the energy for that. I decide I have a taste for a sandwich and salad (because I'm supposed to be losing weight).

12:30pm - I've finally made a small sandwich and salad, fill my coffee, and manage to get back to my chair. I'm utterly exhausted and no longer feel like eating. I set the food aside to sip my coffee and stare at the computer some more.

12:35pm - I force myself to eat half the sandwich and a few bites of salad.

12:45pm - I finish the sandwich, salad and coffee. I ate too much and feel groggy.

1pm - I regret eating because lately any time I eat, I get super sleepy (like stuffing yourself at Thanksgiving). I fight to stay awake while my brain feels like pudding. Nothing makes sense. I can't focus on anything, not even a TV show.

2pm - My husband gets home from work and forces me to take a nap. I don't want to because it's just wasting the day, but I'm also not doing anything because my brain is mush and I literally can't focus my eyes.

5pm - I wake up from my nap with a headache and feeling even more tired. I cry because I wasted three hours in bed for nothing. I go downstairs to start making dinner.

5:20pm - I spent twenty minutes staring at the fridge/cupboards trying to figure out what I'm going to make and how to do it when I can barely think straight. I keep getting interrupted by my 10yo because he's starved for attention having not been to school or seen his friends since March. It makes focusing even harder; everything takes three times as long to do.

6:30pm - I've managed to cook something, but I'm not too exhausted to eat so I leave the family bickering over something and go back upstairs (maybe with another cup of cold coffee) and stare at my computer for awhile.

7pm - My husband realizes I didn't eat and brings me food before he goes to bed. The 10yo is in my room because he's bored so I can't do anything even if I wanted to because I have to focus on what he's saying to make any sense of it (still doesn't make any sense because he's hyperfixated on some weird stuff).

8pm - My other kids have come and gone, also bored or fed up with being isolated with each other for months. My oldest drops the grandson in my room because she needs to do... something. I don't know what to do with him because I'm so tired but he just wants to watch DuckTales because he's tired.

8:30pm - The oldest comes back in and gets the baby riled up so he's getting into everything and making a mess I won't be able to clean up.

9pm - I'm mentally and emotionally done with the chaos and kick everyone out of my room. I try and do some stuff on the computer but my brain is still foggy.

9:30pm - The cat wants outside (he won't use a litter box so has to be let out when he needs to pee) so I trudge downstairs and let him out. Out of habit, I go into the kitchen to find no one put the food away when we ate three hours ago. So I spend a good twenty minutes trying to quietly get containers and put everything up without making noise or turning on the lights because my husband sleeps on the couch and the living/dining room/kitchen is just one big space.

10pm - Finally back in my chair, and I'm exhausted. My head still hurts. I play solitaire on my phone because it's the only thing my brain can comprehend at this point.

11pm - One of the girls will come in to chat because they're bored. Then the others will follow to complain about something. Someone lets another cat in that just meows to get back out so I'm forced to get up to open the door. Ugh. I get rid of the kids and try to concentrate on the computer but my eyes aren't focusing again and the words all jumble together.

12am - I give up and get ready for bed which is just going to the bathroom, brushing my teeth and actually climbing into bed because I never got dressed earlier and just wear the same sweats and t-shirt for days (why waste energy getting dressed to sit in my chair). I end up playing on my phone because despite being exhausted, I can't fall asleep.

3am - My battery dies on my phone so I reluctantly get up to plug it in across the room and then spend five minutes trying to get comfortable, but with nothing to distract me, my anxiety is through the roof and I want to cry from frustration and depression because I did nothing all day but I'm exhausted like I just worked a double shift.

That's pretty much my entire life. Every day is the same thing--get up tired, spend all day tired, go to bed tired, wake up tired. I'm just always tired. I go without eating because it's too exhausting to get food. I stare out my window in tears because it's a beautiful day, but I don't have the energy to even go outside. I can't enjoy our backyard because it's a mess and no one will pull weeds and pick up dead mice and I can't sit on the front porch because the guy across the street is a dick and is always out there and as soon as he sees me, he starts bitching about scum and lowlifes in the neighborhood (I know he's talking about my family).

So, I'm stuck inside. I used to love going for walks. I could walk for hours, lost in my thoughts. Now I get worn down walking across the house or down the stairs.

It's taken me a good thirty minutes just to write this journal, partly because I kept losing my train of thought and struggled to remember what I even do all day, and partly because I got interrupted two different times (a normal occurrence and each one means backtracking and spending ten minutes trying to remember what I was writing about).

Sometimes I wonder what's the point of living if this is what the next 40 years of my life will be like. My kids and grandkids are going to grow up and I'm missing out on all of it because I don't have the energy to even sit and listen to them talk, let alone play with them.

*picture of my chair where I spend 95% of my time

Written by justanotherjen

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