My husband has a complex role to play in my efforts to stay healthy. At times he's a great support, occasionally he pushes me to just power through, and once in awhile he takes an afternoon off to simply lay next to me in bed, when that's all I can do. He is not one for heart-to-hearts, however, so he often expresses what he's feeling through humor.
I have moments (or sometimes days/weeks/months...) of extreme fatigue in which I need to lie down immediately and, once down, can barely move to even lift my head. It typically happens when my blood pressure is too low or I've pushed myself too far, and my body decides the only way for me to get the rest needed is to completely shut down.
My husband calls this "flopping." Sometimes I won't even notice I've done it again, until he comes home and says "uh oh, you flopped!" I'll come back to the moment and find myself face down on the floor, couch, bed, chair, grass... I've flopped on so many surfaces I can't keep track anymore. It's happened at home, friends' and family's houses, even occasionally at work. In typical fashion, my husband's response was to simply take a picture of me on his phone to laugh at (or with) me later. Before I started my diet/treatment, it was happening so often that he decided he was going to create a calendar with a different flop photo in each month. It was such a regular occurrence, he figured we could even get settings that corresponded to each month/season.
Unfortunately for the calendar (although fortunately for me), the diagnosis a year ago and the treatment that followed have decreased the number of flops each week dramatically! It is now so irregular that it often doesn't happen when my husband is home and, when it does happen, he's no longer in the habit of taking the photos. So, the calendar never happened.
A few weeks ago, however, I went to a retreat for spoonies like me! We did an activity that involved another person mirroring your illness. For me, this meant interacting with someone I barely new as she assumed my typical "flop" position on a hard barn floor. I then spent the weekend seeing person after person experience fatigue and take on similar positions. That Saturday night we watched Unrest, a documentary about Chronic Fatigue Syndrome. It was an incredible film and I will be posting more about it later, but the first thing that hit me about it was witnessing someone else struggle to get off of the floor. She'd be on her way to the bathroom and not be able to make it. She would just flop, and let her husband film it, so that the world could see what it's like.
After all of these experiences in one weekend, and feeling empowered by the #millionsmissing movement, I decided that I actually want the world to see more of us as we flop. So, here's a visual taste of what it's like!
This was at a friend's house. I have gotten sick in so many different ways there -- probably because of the hour drive to get there, or the cozy wood stove. Whatever the reason, this is often how I end my visits with them.
You can see the cards on the table from the game we were playing before I was too fatigued to keep going.
I'm not actually sure if I'm laughing or holding in tears (or both) in this picture, but I have certainly done both while flopped.
Wheeeeerrree's Ari? ---------------------->
This picture portrays my weekly Friday evening flop that happened for quite awhile. We would go to my parents' house for dinner and the combo of ending the week, eating foods that triggered my MCAS, the cat (that I'm allergic to), the half hour drive, and the wood stove would flatten me every time.
For awhile my mom actually worried that I was allergic to her. Or that I was really lazy and faking feeling sick to get out of helping clean up after dinner.
Now, this one may look like the same day, but it's in fact a different Friday night. Notice the different outfit...
This position is actually incredibly similar to the pose I took during the activity mentioned above at the retreat -- flat on my stomach, left leg out to accommodate my bad hip, one hand on my stomach, the other on my head.
Too bad I didn't yet realize that being too close to the fire only made it worse.
This one, I believe, was at an Easter hunt with tons of people. I tried to resist because I didn't want the whole group to see me flop, but eventually I succumbed.
It was so bad by that point, I needed to put my legs above my head, for fear of passing out.
Just another view of that last one...
Although not an artist himself, my husband likes to get different perspectives in his photography.
I think at the hunt the next year I actually flopped in a hammock and couldn't get out for at least an hour.
Gotta love this one!
My hair looks wet, so I probably spent a few too many minutes in the shower and then didn't have enough blood left in my brain to make it through getting dressed.
It looks like I was wearing my compression stockings, so I was clearly trying to get the blood out of my ankles!
I think my favorite part from this series (and yes, there were more -- I just chose two), is the shirt I'm wearing. It's a work shirt, so I was probably trying to make it to work (good luck there, buddy), but also it's an AmeriCorps shirt. The line on the bottom reads "I will get things done!"
LOL.
This one is a decade or so old, but I thought I'd show a range. I can remember flopping as early as middle school, but it became much more regular in high school. It was disheartening whenever it happened in front of friends, but I had these two cuties at least to keep me company. They could always tell when I didn't feel well and would come to the rescue!
Although not my pet, this particular cutie has joined me in many a flop...
I was clearly not at my worst, considering I was able to hold up my limbs, but it's important to note that this is good example of invisible illness -- I may look smiley and goofy, but I also really felt quite sick.
It was actually this very same night when I discovered the beauty of recliners! I'm not sure how it took me 26 years, but it has changed my life. So thank you, Pippi, for forcing me off the couch and into the adjacent chair.
Just found this gem on my parents' computer. Not sure why I was wearing a tiara... but I was on a family vacation, at a common place for MCAS crashes. The skirt makes me think we'd just been out to eat, and the half-on-half-off sweatshirt shows the cycle of hot flashes and chills that accompany most flops.
I believe that too much sun was my downfall in this one -- and eating triggering foods (I think chips and salsa).
Sometimes flopping doesn't feel so bad. It can feel like a welcome moment of peaceful rest, as long as I don't try to fight it and don't have anything else that needs to happen.
I mean, who doesn't love the feel of earth under your body and the sun on your face?
UPDATE: I am currently at a conference sitting with medical professionals who've gathered from around the country to learn about EDS, as well as POTS and MCAS. I wore my nice button-up shirt in an effort to appear my most professional. But after 3 days of conferencing, I am utterly spent. On top of that, I haven't eaten nearly enough salt today. I have learned (since writing the above posts) that my POTS is actually more significant than I thought. It seems that POTS/orthostatic intolerance (the inability to remain upright) is a large cause of my flops. MCAS flares can also cause a sudden flop, but the more gradual ones after meals, showers, in the morning, after teaching... are probably mostly POTS. Anyway, it all became too much, and here I am, at a medical professionals conference, in all of my professional attire, flopped in the middle of a lecture for hours, unable to get up, with a blindfold over my very sensitive eyes. (and yes, I do bring pillows to conferences)
