Day in the Life #17: Ehlers-Danlos Edition

As I mentioned last week, May is Ehlers-Danlos Awareness Month, so today I’m running through a day in the life of this EDS patient. It’s my standard day in the life post, but with more insight into how it feels.

First, I want to throw out there that EDS is different for everyone. It’s weird, variable, and often not diagnosed. Also, though I think this goes without saying, it’s not me having a pity party. Part of the reason I’m able to write so many day in the life or weekend recap posts without talking about EDS or pain is because it’s not what I remember about most days. I notice it, absolutely, but I don’t lie in bed at night thinking about the different weird things my body did that day. Except… today I’m doing a bit of that for the sake of helping other people (that’s you!) understand.

5:18 am – Wake up naturally, a little too early for me. My blankets are all over the place. This is the one downside of the weighted blanket: sometimes its weight drags my other blankets off me.

5:32 am – Roll out of bed and hobble to go brush my teeth. A relatively new development is that in the morning my feet are kind of frozen into whatever position they were in while I was sleeping and it takes them a while to warm up. Make a mental note to email my doctor. I’ve been making the same mental note for about three weeks. I swear I’ll do it soon.

5:36 am – Pull the weighted blanket off my bed and crawl back in, adjusting my covers more easily without the 14-pound blanket dragging them down. Lie in bed and scroll through social media for a while. Play Disney Blitz. Wiggle my toes a lot to make my feet loosen up.

6:25 am – Get up, change into gym clothes, and toast some cloud bread. Pull my hair back. Roll out stiff shoulders.

6:46 am – Spread toasted bread with cashew butter and head out the door.

Listen to yesterday’s Federalist Radio Hour on my way.

6:58 am – Get to the gym. Warm up for about 10 minutes.

7:10 am – Do a bodyweight HIIT workout that is pretty humbling. My shoulders are the most sensitive part of my body and this had lots of plank variations and pushups that I feel in my shoulders. It took me a little longer than I thought because I stopped to roll them out a bit. I loved the workout, though, and I’m all for strengthening the weaker parts.

7:30 am – Cool down on the elliptical for 5 minutes and then stretch out my hips and hamstrings for 5 minutes.

7:42 am – Walk back to the dorm. Listen to The Chasing Joy Podcast. I was definitely one of the ones complaining that 40°F is too cool for May, but today is 80°F and it’s too hot for me.

7:56 am – Get back. Love the air conditioning they turned on yesterday. Shower. Do my makeup. 

8:30 am – Get breakfast. I toss steam-in-the-bag broccoli into the microwave while I slice up some Hickory Smoked Cajun Style Turkey Breast from Jennie-O I was sent as part of their Switch Circle and cut into an avocado.

8:38 am – Take my morning pills and supplements. Get some water. Toss the food in my favorite giant bowl. Take a picture.

Eat the food.

9:06 am – Consider doing some reading. Decide to save my energy for classes. Read some blogs and chill in bed.

9:35 am – Reluctantly go dry my hair. It’s too hot for hairdrying, but c’est la vie. Confirm with my research group that we’re meeting with our TA this afternoon. Text my friend to tell her that I’m officially not an IT intern this summer, which was my biggest fear after my experience last summer. (I’m a communications intern.)

10:14 am – I grab another slice of cloud bread and head to Cognitive Psychology, continuing The Chasing Joy Podcast.

10:30 am – Class starts. Somewhere in there the professor makes his usual joke about the quick psych experiment he ran in class not working well on UChicago students because we’re so out of the ordinary.

11:14 am – Quick class break. So thankful for these. I stand up and stretch out, and check the intern group message that’s exploded on my phone since we got our assignments last night.

11:20 am – Class resumes. Bleh. I’m super fidgety and my back hurts, so the rest of class passes too slowly.

11:50 am – Head back to the dorm for a quick lunch of leftover pizza from last night.

I made a Trader Joe’s frozen cauliflower crust pizza with Rao’s Homemade pizza sauce, Kite Hill almond milk ricotta, Trader Joe’s shaved Parmesan, Asiago, and Romano, two Trader Joe’s Roasted Garlic chicken sausages, roasted red peppers, a whole carton of mushrooms sautéed in ghee and garlic olive oil, and arugula.

It was completely delicious, and I had half for dinner last night and saved the other half for lunch today.

12:35 pm – Have a little wedge of Trader Joe’s dark chocolate. Leave a little later than I should to meet my research group and TA.

12:46 pm – Get to the econ grad student lounge and see that another group got to the TA first, and that my group isn’t there. And isn’t responding to texts. Awesome.

12:55 pm – Start getting quite annoyed. I have class in a half an hour and no word from my group mates. Pace a little to loosen up.

1:06 pm – Decide to just head into the lounge and wait to talk to the TA. Also, decide I’m okay with being a little late to class if he can answer our questions.

1:15 pm – One of my group members shows up, almost right as the TA is ready to talk to us. Perfect. We ask to make sure we’re performing the right regression, that he thinks a little of our extra work is still a good idea (unfortunately, he does), and ask how we can account for the variable locations of the teams we’re analyzing. He helps. Yay.

1:35 pm – We’re all done and we agree to talk about how to split up the work later. I head to class.

1:42 pm – It’s a big lecture, but it’s still a little awkward when I walk into Health Economics and Public Policy 12 minutes late. Whatever.

2:00 pm – My teacher realizes he’s confusing everyone and he should have derived the model he’s working with on a handout so we didn’t have to try to make sense of the dry-erase writing on the board. He offers to give us one on Thursday. Thank goodness. 

2:24 pm – We finish talking about small area variations and the professor almost asks if he should bother moving onto cost-effectiveness analysis before realizing we have a full 25 minutes of class left. So, yeah, he should bother. He offers us a break while he sets up his presentation. I’m all for that.

2:35 pm – A weird pain starts shooting through my left hip. I wonder whether I’ve ever felt that before. I don’t think so. It’s gone about 5 minutes later. 

2:50 pm – Call my mom, complain about a few things, vent about how much is getting crammed into my last 17 days here, add that I’m so freaking tired and in pain. Eat a mini dark chocolate bar from Trader Joe’s. Fill her in on the limited internship info I have, since I only talked to my dad about it last night.

2:54 pm – Make dinner plans with Susie.

3:15 pm – Hang up with my mom. I write most of this post.

3:40 pm – She calls me back after she leaves work to vent about work things she couldn’t vent about while she was at work.

4:16 pm – We hang up again. I keep writing.

4:47 pm – My dad texts me to say he’s leaving work. That’s my cue to call him. We talk about my sports research project and then he gets to his destination, so we say goodbye.

5:03 pm – Decide to get dressed for yoga. I’ve been debating going all day and finally opt to just do it. When I get up, I realize I’ve been sitting for too long and have to jump around for a second to loosen up.

5:12 pm – Head to Whole Foods first. I want more strawberries, dates, and ripe bananas. They don’t have dates, but I get the other fruits, plus a Perfect Bar and a few pints of Halo Top. And a few dark chocolate bars that are on sale. I swear I don’t have much a stockpile of chocolate right now. This will get me through the end of the quarter.

5:38 pm – Walk to CorePower. I get there way too early for the class, but I like chatting with this instructor. Also, I want to see if she has my 200-hour certificate.

5:49 pm – Get my certificate and she gives me a hug and tells me she’s so proud of me.

5:52 pm – Talk with a lady who started in my TT class, but broke her wrist horribly right after TT started. She’s been rehabbing from her surgery and is just getting back to yoga.

6:00 pm – A tough but amazing yoga class. For me, yoga requires a lot of care to ensure my joints stay in the right places. My hip clicks and locks a few times. So does my knee. Ehlers-Danlos problems. I just glide out of those postures, readjust, and settle back in.

7:05 pm – Talk to the teacher after class. Thank her for the awesome class, reassure her that it was the good kind of hard. Celebrate with the woman with the recovering wrist because she managed to do chaturangas for the first time since her injury.

7:15 pm – Head home. So hungry. I probably should have had something other than the piece of chocolate before yoga.

7:24 pm – Hop in the shower. I loathe showering twice in a day, but I do it for yoga.

7:33 pm – Start dinner in my pajamas with wet hair. After evening yoga, I almost always have my favorite paleo “oatmeal”. It’s cozy and requires zero thought.

7:49 pm – Sit down to eat.

{Recycled pic. Same thing.}

Work on this post. 

8:24 pm – Take my evening meds and eat some S’mores Halo Top.

8:56 pm – Start to wind down for the day. My hips are getting pretty mad at me and my eyes are heavy. Play through my Disney Blitz lives. Get ready for bed. Rub lavender essential oil into my wrists.

9:27 pm – In bed. Feel so much relief. Laying down is one of the best feelings all day.Text my parents good night and turn West Wing on my phone. Turn over and go to sleep.

9:55 pm – The fire alarm goes off. It’s not a drill. I put on a jacket and my glasses and go stand outside for a long time. I’m tired and my head hurts and I wanna go back to bed.

10:26 pm – Back inside. Bedtime for real.

Your turn:

What’s your busiest day of the week? Tuesdays and Thursdays this quarter.

Do you have a go-to dinner?