Wednesday, April 16, 2014

A Day in the Life

For many years now I have had people tell me that my Good Day and Bad Day posts are their favorites. A lot has changed in the past five years, so here is what an average day looks like for me now. This is neither a "good day" nor a "bad day." On good days I can do more than what you see here, though I may pay for it the next day. On bad days I struggle a lot, and I have to pretty much stay in bed.

Snuggle time with my children

Enjoying time with William and Adelaide.
I love it when they come into my bedroom to talk in the evening and give me hugs and kisses.

A Day in the Life
Monday, April 14, 2014

6:30 am – I hear Will stirring, but I soon fall back to sleep. Will gets up and gets himself and the children ready for the day. He makes breakfast for them, makes sure that they are properly clothed, and fixes Adelaide’s hair. Will walks William to the bus stop while Adelaide watches from the window. Then Will takes Adelaide to daycare at a friend’s home. Will and the children are very quiet in the morning so that I can keep sleeping and hopefully get the 10 hours of sleep that I need.

9:53 – I open my eyes and begin the process of waking up.

9:58 – I call Will and ask for some coffee and breakfast. Usually he is at work in his office, which is in our basement. However, today is Monday and is Will’s day off work. Instead of staying at home, he is out grocery shopping this morning. Will tells me that he left breakfast outside the bedroom door for me.

10:02 – I grab my breakfast, laptop, and Bible, and I lie back down in bed. I take my morning meds and eat breakfast. I check email and Facebook, and I read online while trying to convince my brain and body to wake up and get moving.

11:07 – I am feeling awake enough to start my prayer and Bible study time. I grab my prayer journal and pray for many of the requests listed there. Next I walk to the kitchen and pour myself a cup of coffee. I head back to bed to read and study my Bible.

11:50 – Will is home from shopping and comes in to see me. We chat for a few minutes. Then Will goes back to putting away groceries, and I turn my attention back to my Bible study.

12:04 pm – I finish my Bible study time, and I begin working on email.

12:40 – Will goes to pick up Adelaide from daycare, and I get up, get dressed, and brush my teeth.

1:00 – Adelaide comes home. I read to her and get her ready for a nap. Usually Will puts her down for a nap, but today I am feeling well enough to put her to bed. This is a special treat for Adelaide!

1:30 – I sit down at the kitchen table and look through the mail. I am excited that a new book has come in the mail for me! It is Rhinestone Jesus by Kristen Welch. I will start reading it later on this afternoon. Right now it is time for lunch, but my stomach is feeling pretty unsettled.  I choose Jello and ginger tea, knowing that even with gastroparesis, my tummy will probably be able to tolerate those two things. I am wobbly and weak from my activity in the last hour, so Will helps me to the bedroom. He carries the hot tea so that I don’t accidentally spill it while walking.

1:45 – Will heads out to do more errands while Adelaide and I have nap time. I lie down in bed to eat my Jello and drink my tea. I read a friend’s blog, and then I make a few edits on my own blog.

2:19 – I call my friend Dorina. We talk and catch up for a few minutes.

2:27 – Adelaide is having a hard time sleeping. I get up with her, help her in the bathroom, and put her back to bed.

2:31 – I lie back down in bed to read and rest, and I start reading Rhinestone Jesus.

3:15 – My stomach feels like it can handle more food, so I get up and get a banana. Adelaide still hasn’t fallen asleep. I help her in the bathroom again and take her back to her bedroom. I ask her to play quietly so that I can rest. I go back to bed. My legs are weak and a bit shaky from all of the up and down activity since waking up this morning. I haven’t done a whole lot today, but not having an extended period of time to rest takes its toll on my muscles.

4:00 – It is time to get up and spend time with Adelaide and William, who has come home from school. My legs are weak, so I grab my walker to help me get around the house. William is busy playing with Legos and listening to a story CD and decides to join us later. I get a snack for Adelaide. She sits on the floor in the living room, and I curl up on the sofa near her.

4:10 – Will comes home from running errands. We talk with him and catch up on our days thus far.

4:22 – My body feels weak and faint. I pray for renewed strength and energy, and I ask the Lord to help me have a good attitude and to love my family well.

4:25 – I ask Adelaide to get a Boost from the refrigerator for me. I drink the Boost and take some midodrine to raise my blood pressure.

4:30 – Will brings a box of Easter decorations upstairs, and we start to decorate the living room. I stay seated on the sofa, and Will and the children do the walking and placing of decorations.

5:05 – My body is too tired to continue, so we set the rest of the decorations aside for the day. Adelaide asks me to tell the Easter story using our Resurrection Eggs set. I am tired, but I know that I need to push through and tell the story. The Easter story is important!

5:20 – I lie down on the sofa to be with my children while William does homework and Adelaide plays with Easter eggs. William is soon finished with his homework, and he and Adelaide take turns hiding and find Easter eggs in the living room. I have fun watching them play together.

5:45 – We eat supper in the living room. The children eat on a blanket on the floor. I eat while lying down on the sofa, and Will joins me on the sofa.

6:15 – I am tired and have a migraine. It isn’t wise for me to keep pushing my body much longer, so I get a shower and get ready for bed.

6:45 – I fall into bed, so tired and ready to rest. This is both my favorite and least favorite time of day. I am thankful for the opportunity to have much needed rest and quiet, but I wish I could be with my family longer.

6:47 – Will brings a cup of tea to me. I check email and catch up with friends on Facebook.

7:15 – I want to type some emails, but my arms are too weak. Instead I need to lie completely still and just watch a television show online.

7:38 – The children come in to say good night. We give hugs and kisses and chat for a bit. Adelaide asks for a cape so that she can be Elsa from Frozen. I tell her that I have some fabric in the basement that I can use to make a cape for her, but that I can’t make it right away. She is excited about having a cape, but disappointed that she can’t have one right away. William comes to the rescue and brings his Darth Vader cape for Adelaide to wear. Adelaide pretends to be Elsa while walking around with the Darth Vader cape, happy as can be!

7:42 – Will brushes Adelaide’s teeth and gets her ready for bed. William asks me for help coming up with clever words for a Star Wars mad lib. We work on it together.

7:51 – Adelaide comes in for more hugs and kisses.

7:53 – Will puts Adelaide to bed, and William reads his mad lib to me. We then start working on a second Star Wars mad lib.

8:00 – Will comes in as William and I are finishing up our second mad lib. Will reads it out loud for us and we have a good laugh together.

8:07 – Will puts William to bed, and I return to my television show.

8:32 – Will comes in after putting William to bed, and we chat for a few minutes.

8:38 – I am in need of soft and liquid food regularly, so Will makes pudding for me. He makes a double batch so that I will have some in the refrigerator for a few days. He also works in the kitchen to clean up the messes from the day. While Will works in the kitchen I finish watching my tv show, and then I work on some online volunteer work.

10:00 – Will has finished cleaning the kitchen and making pudding. We talk for a few minutes.

10:20 – Will starts the night time routine. He fills my water bottle, gets an ice pack for my feet, and gets himself ready for bed. I finish up some email and Facebook messages.

10:38 – Will comes into the bedroom. We talk and spend some time together even though it is a later evening than usual.

11:25 – We pray together and kiss good night. I turn off my computer and take melatonin to help me fall asleep. I turn off the light and pull out my kindle. I read on the kindle to help my body wind down and fall asleep. Sometime around midnight I fall asleep and sleep peacefully.


  1. Janie Hovda FarrensApril 16, 2014 at 10:27 AM

    Thank you so much for sharing this. I really don't know how you were able to do so much for DINET these last few years. I think what I enjoyed most about his blog post is the sense of contentment that filled your words. Thank you for sharing!

  2. Interesting how when you deal with chronic illness, like you have for so long, you never take things for granted. it opens one understanding on how to rely and appreciate God for how he takes care and aids us. I have read your other blogs on your previous life before dysautonomia. How has your understanding of the trinity changed.

    When we are in a well body, it seems we cannot see how much help God gives us.... Now living with dysautonomia, I understand just how near God is to us. My grace is sufficient takes on a whole new depth and comfort..

    Thanks for your encouraging words...

    Hope you have a blessed Easter weekend

  3. Thank you, Janie. I am not always content, but I do strive to be!

  4. Hi Corrine, it is good to hear from you. Living with chronic illness certainly does help one rely on the Lord. We learn that He truly is sufficient!

    I don't think my understanding of the Trinity has changed because of being sick, though as I grow in my walk with the Lord, I think my understanding does deepen.


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