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.
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.
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!
ReplyDeleteInteresting 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.
ReplyDeleteWhen 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
Thank you, Janie. I am not always content, but I do strive to be!
ReplyDeleteHi 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!
ReplyDeleteI 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.