What's In A Day?

Sunflower with Rain and Bug in our Yard

I'm often asked: "What do you do all day?", "How do you keep busy?", "What does a day look like for you?".  Here is a sample of a day in my life with chronic illness. This post focuses on what I 'do' in a day, rather than how I 'feel' symptom-wise when I'm, say, walking to the mailbox.


Each day I carefully weigh my decisions.What needs to get done? What would bring me joy? Am I willing to pay the price physically if I push through to blog? Do I have time to go on an outing in spite of all of the medical things going on? Is it worth it to push through an outing? The extreme limits placed on my days leaves me making concession after concession. My symptoms, as much as I rail against them, often rule the day.

Sunflower Getting Ready to Open

12:45 AM--Lights out. Hope to fall asleep quickly and easily.


6 AM--Wake up to pee. Have dizzy spell and can't fall back to sleep. Turn on NPR Morning Edition to listen to until I fall back to sleep. Shake Asher's treat jar so he will jump up on the bed and keep me company.


8 AM--Alarm goes off. Wake up to take Cortef and DHEA. Get up to pee. Again.


10 AM--Wake up to pee again.


11 AM--Alarm goes off. Take the meds that I need to be able to get out of bed, most importantly midodrine, which raises my blood pressure. Get up to pee. Again. Asher, who is waiting outside my bedroom door, comes into the bedroom with me, gets up on the bed and cuddles with me while I wait for my meds to kick in and say my morning prayers.


11:30 AM--Alarm goes off again. Time to get up. I need to get up slowly, so I turn on the TV and watch a few minutes of The Martha Stewart show while tilting my bed upward a bit and eventually sitting up. I check the weather, pick out clothes to wear if I haven't done so the night before, and get dressed. At this time I put on my compression hose and girdle which also help to raise blood pressure.


11:55 AM--Go into bathroom to wash face, comb hair, spritz it with water and, if I feel up to it, put some product in it and scrunch it a bit. Put on some blush so I don't have to look at my pale face! 

Love the Rain on the Sunflowers

NOON--Head into kitchen. Mom has either left me an easy lunch to prepare or she is here to help me prepare lunch.  Eat lunch while either visiting with Mom or looking through a bit of the local newspaper. Mom often marks or highlights the funniest comics, a good horoscope, and stories that I might find interesting since I don't feel well enough to read much of the paper. Finish feeding Asher his breakfast.


12:05 PM--Alarm goes off again reminding me to take another dose of Cortef.


12:40 PM--Take after lunch meds and supplements. Take stock of how I am feeling and what I might be able to do with my day. 


12:45 PM--Brush teeth. Pee again. 

Our First Year Growing Sunflowers Thanks to My Friend Alia

1:00 PM - 3:00 PM -- These are the two hours each day during which I am most able to do things such as try and work on a blog, make medical calls, go on an outing to the Farmer's market, go for a StRoll with mom, have a friend over for a visit, go to a doctor's appointment, etc. What I'm able to do during these two hours varies a lot. Most difficult are days that I need to rest all afternoon. I usually need to choose one big thing (i.e. an outing or a blog) or one or two small things to work on (an email or a medical call). This is typically my 'best' part of the day excepting the angst I always feel over how to spend the time. The following is a sample of an afternoon that is 'good' in the sense that I was able to work on a blog, but difficult because focusing and concentrating are such a huge struggle and I paid a big price for pushing through my symptoms.


1:15 PM--settle into the recliner in my study to blog. Was delayed by an upset stomach. Start this blog post.


2:00 PM--Having trouble concentrating. Have to pee. Take a little break. Go to mailbox. Open 'good' mail--a Rosh Hashanah card! Check in on Mom's yummy cooking for the holiday. Walk around the house inside a couple of times.


2:20 PM--Settle back in at computer in study. Asher settles in too. :) 


2:30 PM--Alarm. Time to take midodrine. 


2:45 PM-- Can no longer focus on blogging. Take a break to import a couple of CDs. Return phone call to Dr. Complex.


3:10 PM--head into kitchen for a snack. Am too sick and tired to do anymore. Give Mom her Rosh Hashanah card. Hang out with FuzzFace.

Getting Ready to Bloom

3:45 PM--Take final dose of Cortef. Get ready for a nap in the recliner in the den. Send out a couple of text messages.


4:00 PM--Am totally exhausted and desperately want a nap, but end up having to pee a couple more times before falling asleep around.


4:45 PM--Fall asleep while listening to Jon Kabat-Zinn's meditation CD.


6:10 PM--Alarm goes off. Time to take midodrine. As you can see I'm very 'boxed in' by my medication schedule. Check email and FB for a few minutes on phone or netbook. Pee again.


6:30 PM--Head into kitchen to get ready for dinner with Mom. Take probiotics before dinner. 


6:35 PM--We settle in to eat in the living room, where I sit in a recliner. Mom always provides a healthy, delicious meal for dinner. We update each other on anything and everything.


7:30 PM--Head back into kitchen. Take after dinner meds. Check in with Jeannine via phone or text. Dad calls. 

Double Sunflower

8:10 PM--Am completely exhausted. Take a bath. I always take baths in the evenings because it is too difficult to take a bath when I first wake up. Get ready for bed.


8:45 PM--Was able to do a lot this afternoon, but am now fried this evening. Crawl into bed to watch TV. Tonight I'm watching Dancing With The Stars 'with' my fellow POTSPals, Kristen and Rachel.


9:40 PM--Alarm goes off reminding me to take my fourth and final dose of midodrine for the day.


10:30 PM--Take supplements to help body get ready for sleep. Get up to pee. Make lists, etc. for the next day. This used to be my prime email and FB time each day. Now, I'm trying to push my bedtime back earlier, so I've eliminated computer time before bed.


11:15 PM--Take Ambien. Listen to book on CD or music. Tonight, I'm exhausted, so it's my Rosh Hashanah CD. Asher lays next to me in bed, sleeping soundly while I snuggle and pet him.


12:15 AM--Get up to pee one last time. Turn out lights and hope for sleep. Asher jumps off of the bed and heads to his 'spot' on the floor.


2:15 AM--Still haven't fallen asleep because of so many ANS symptoms. Finally fall asleep.

After the Rain

I take meds a dozen times a day and pee even more times every day. I need a lot of breaks and rest time, even if I'm not able to sleep. Much of my day is spent reclining and my windows of time for sitting up are minimal.


Normally, I also would have checked email and FB too many times to count throughout the day, but I've been working on taking a bit of a break (blog post on that to follow).


The 'good' side of this day was that even though I was feeling lousy, I did get to blog a bit and choose an activity that I really wanted to do. A lot of days are dictated by medical calls and other things that absolutely have to get done. If I choose to go on an outing, I need to save all of my energy for the outing and rest during the other times of the day. In the summer months we try to take a StRoll in the evenings after dinner. Other days are dictated by symptoms that leave me too sick to engage in an activity, and I can't push through my symptoms at all.


And that's what's in a day. At the end of most days I'm left desperately longing to have more ability to engage in the world around me.


Blessings,


Emily