What do you do all day?

The question has often been asked "So, what do you do all day?"

Naturally, at first I really took offense to that. I felt like it was an attack, accusing that I don't do enough. Then I reminded myself that others who are healthy don't know what it's like to be chronically sick, and maybe they really are asking to understand it better. So today I'm going to take some time to answer that question.

My short answer is always "Whatever I can do" and it's true. Because every day, even every hour, is different, I just do what I can when I can and try to make the most of it.

Worst case scenario outside of a trip to the hospital, this is what I do all day:
I lay in bed. I need someone to cook for me, even bring my food upstairs to me. I have a bell in my nightstand if I'm too weak to walk, talk or really do anything. I sometimes watch some tv, sometimes read if I'm able, sometimes sleep. One thing I can always do is pray. It's not fun laying around but some days this is my reality.

Best case scenario, this is what I do all day:
I have plans for something- maybe lunch or dinner, maybe going to the mall, maybe the zoo. I rest, I get ready for those plans- fix my hair and makeup, I rest some more, I go out and enjoy myself for a few hours or as long as my body allows, I come home and rest again. Any day my symptoms are so slight that my attention is more on what I'm doing than what I'm feeling, it's a "good" day.

Most of the days fall somewhere in the middle. So now I'll tell you what I do in a somewhat typical day:

- I wake up naturally, rather I have to wake up naturally. If I don't, my body will be thrown off and I'll fall closer on the scale towards worse case scenario. This is anywhere between 7-9am usually. I can't just jump out of bed either. My body needs time to adjust. So when I first wake up, I have to lay there for a while. I take my first medication that needs to be an hour away from food. Then I will sit up and do my daily readings- devotional and Bible.

- An hour after taking the first medication and once my body is ready, I will go eat some breakfast to take more medication. Breakfast consists of a banana and an organic, gluten free bar (similar to a granola bar) most of the time. It's easy and quick for me to do to conserve energy.

- I then usually return to bed to rest some more while checking email.

- Mid-morning my body is ready to do more. If I have no where to be that day I will start getting things done that I need to such as paying bills, going through insurance claims, making phone calls, etc. If I do have somewhere to be such as a doctor's appointment, I will get ready. That consists of changing clothes, probably just pulling my hair back and putting on just a bit of makeup. If I have no where to be and feeling good enough I will go for a short walk.

- I rest some more.

- Lunch- And more medications. If my mom is home my usual is typically a burger and she will cook it for me, again to conserve my energy. The more I conserve, the longer I can last through the day. It sounds bad eating a burger almost daily but if I don't get my protein early in the day, I can't function. For some reason, a burger helps me the most. It's always organic/grass fed/antibiotic free/hormone free beef. My body responds very poorly to regular beef.

- I rest slightly after lunch.

- If I have somewhere to be, I always try to schedule it for the afternoon when I'm at my best typically. If it's more than a short drive, typically my parents drive me, again conserving my energy. If I don't have somewhere to be I will either keep getting things done that I need to or do something I want to such as reading, writing, browsing the internet, etc. I'm an introvert so I can easily do any of these for hours keeping myself occupied and entertained. If I get too weak doing those things, I'll throw in a movie and rest more. On better days I'll do a little cleaning or my laundry. On most days, that wears me out too much.

- Dinner- And more meds again. Either I make something fairly easy, already had something going in the slow cooker, or my mom will again cook for me.

- I finish up anything I was working on during the day, probably check email again, browse facebook a bit.

- I shower at night because it allows me to recover (yep- you heard that right) from it overnight and not have to get ready right after. I let my hair air dry to again conserve energy.

- In the evening sometimes I will watch a show I'm into (ok really the only show I watch is 19 kids and counting lol) and/or talk or chat.

- Before bed, I'll again read the Bible, pray with another over the phone, take my last meds and then go to sleep.


Some days it's more, some days less, but that is probably average. It probably sounds incredibly boring to you. I mean reading that sounds pretty boring to me too. But what everyone healthy has to understand is that when you have a chronic illness, your body is always fighting. That's where the energy goes, even when we "look fine" as we often do. So everything you do takes more time than it takes healthy people, and feels so much harder than it felt when/if you were healthy. That's why I say I do whatever I can do. If my body allows for me to do more, awesome! If not, I've got my regular routine that allows for me to get through each day planning a few days each week to get out and do something. I've got to make the most of every single thing because I don't have a choice to do more even though I strongly desire to.

I once described it like this: Remember as a kid you would go to the carnival and you either buy a specific amount of tickets or the unlimited ride wristband? Healthy people have the unlimited ride wristband. They can go on as many rides as they like over and over and not have to think about how many tickets those rides are. Those with chronic illness are given a set amount of tickets. Some days we get more tickets, some days less, but it is always limited. We have to pick and choose which rides to use our tickets on and once we are out of tickets, that's it, no more fun. So we have to be careful about what we do and spend those tickets wisely, conserving energy through the day to make it to the end.

Hopefully this helped those who are healthy understand a bit more what it's like for those who have a chronic illness and answer the question of "What do you do all day?". Thank you very much for wanting and trying to understand this, for supporting and encouraging, and for praying for all those who fight through it.

God bless.