Part two of the Ehlers-Danlos syndrome Society’s social media challenge for the month of May, which is Ehlers-Danlos syndrome (EDS) Awareness Month.
Day 6: Management Strategies
Aside from joint stabilization surgeries (like the one in this X-ray), joint replacements, and tendon replacements, my biggest management tool is physical therapy. I’ve been seeing the same physical therapist for over a decade at Beth Israel Lahey Health and she’s amazing.
Other tools in my arsenal include loads of medical specialists, therapy (the psychological kind), two monthly injectable medications, daily medications and vitamins, massages by the incomparable Sarah J. Hebb, hair by Sonya at Widow’s Peak Hair Studio, my amazing unofficial emotional support cats, daily walks with my brilliant husband, having supportive family and friends, my hobbies (reading, writing, drawing, watching TV/movies, playing videogames), and jelly beans.
Other strategies include things like carrying snacks and water with me wherever I go, as well as any abortive medication I may need for nausea, migraines, asthma, etc. I’ve been using hand sanitizer since the ‘90s when my immunologist made me a germaphobe (and I was diagnosed with an immune deficiency).
I wear masks whenever I clean or I’m going to be exposed to a large amount of allergens (like weeding books at work or folks mowing lawns). Along with my mask collection, I have an extensive array of braces for knees, ankles, wrists, and more. I also have special pillows. The most special pillow is a large Star-Lord Tsum Tsum that the husband and I rescued from the clearance bin at a Disney Store.
Probably the most important management strategy is to accept that my body is unreliable. As much as I may want to do something, if I’ve just had a postural orthostatic tachycardia syndrome (POTS) episode and passed out, I probably have to call it a day.
Day 7: Comfort
Honestly, I feel best when one or both of my cats are resting on me. They apply just the right amount of warmth and pressure!
Also key to my comfort: our adjustable bed and couch (the couch reclines and has adjustable neck and lumbar support). Plus: all of my special pillows and braces.
Another aspect of comfort control is staying at a reasonable temperature. My body has a hard time regulating its temperature because of the lack of collagen. Also, I have postural orthostatic tachycardia syndrome (POTS), so I need to stay cool. Plus, one of my meds is dehydrating and diminishes the amount I sweat. So! If I don’t want to pass out, I need good temperature control. (Conversely, if I get too cold, my extremities go numb.)
Lastly: comfortable clothes and shoes! Stretchy waistbands and tights are key when you have gastritis and gastroparesis. And I always want my pants, dresses, and skirts to have pockets, so I can carry stuff like my inhaler and phone. I’d like to have more accessible clothing for post-ops, like pants that button along the outside leg and fit over bulky braces or casts.
Day 8: Movement and Activity
Here’s a shot of me out and about in the Before Times with my partner. I’ve got my rollator and we’re inside a Yayoi Kusama exhibition at Boston’s Institute of Contemporary Art. I use the rollator for our daily walks around our neighborhood (when I’m feeling well enough to walk). When I’m going to medical appointments or errands, I use a cane.
My main source of movement and activity comes from weekly physical therapy appointments and doing physical therapy exercises at home. I used to go twice a week to physical therapy but their appointments are limited because of COVID.
When I lived in a city (4 years ago), I walked way more, though still using a cane. I also practice a little bit of yoga. I used to take classes. I miss those! I wish I had easy access to a pool because swimming is great exercise for those with Ehlers-Danlos syndrome. But my favorite activity is walking around museums!
Day 9: Inclusion
This one is tricky. There’s personal inclusion, like what’s represented in this picture of Sarah and me with Cheryl’s child at the Boston Book Festival a million years ago. Both Sarah and Cheryl are examples of excellent friends who always make me feel included, even though they know that when they invite me to do stuff, there’s a good chance I won’t feel well enough to partake.
When I travel with Sarah or plan to do something with her, she always makes sure everything is accessible in advance. She speaks up for disabled access on social media even when it doesn’t involve me! I could ramble on and on about how amazing she is. I’m lucky to have so many friends and family like Sarah, Cheryl, Lisa, Kenji, Milee, Shannon, Bethany, Saint Mary, and more who keep me included in their lives. A special shout-out to Erin who lets me live vicariously through her Disneyland adventures! 💗💗💗
Another type of inclusion that I think of is in pop culture. Seeing folks from the Oscar nominated documentary Crip Camp on the Red Carpet was so exciting! I want to see more disabled people in film, TV, games, literature, etc. Characters who just happen to be disabled but aren’t defined by their disability. I’d love to see a semi-ambulatory character who uses a wheelchair but occasionally walks. Because we do exist!
Then there’s accessibility as inclusion. I hate stairs. Currently, I can go up them, but going down them is VERY painful, even with my cane. During various times of my life I’ve not been able to walk at all. Why do stairs still exist? Why can’t we have ramps everywhere? I bet folks with baby carriages would like that! Architectural and city planning with better accessibility is my dream.
Day 10: Mental Health
I’ve suffered from insomnia since I was a teenager. I’ve suffered from anxiety since my 20s and reactive depression since my cancer diagnosis in 2014 and EDS diagnosis in 2015. Reactive depression means that the depression is triggered by external forces, like a diagnosis of an incurable degenerative disease. I also have PTSD from my first marriage.
I “see” (talk on the phone because of the pandemic) a therapist biweekly and a psychiatrist every couple of months. I’m on an antidepressant, have an as-needed anti-anxiety medication, and taking a sleeping pill.
Right now, my depression is pretty bad because it’s been triggered by a new anti-seizure medication. I’m pretty down unless I’m physically at work at the library. I’m having a major gastritis/gastroparesis flare that is contributing to the depression. I hate eating. I feel sick to my stomach constantly. My cats make me feel better. Seeing my mom and mother-in-law yesterday helped.
In addition to my new med triggering depression, it’s also triggered my postural orthostatic tachycardia syndrome, so I’m pretty light headed and showering is even more difficult than usual. Last week, I passed out after I showered. Fortunately, my husband is the best and now I wait to shower until he can monitor me.
I’m really looking forward to getting my hair cut by Sonya at Widow’s Peak Studio this week. It may seem like a silly thing, but when I look good, it helps my mood. Also, it will be easier to take care of shorter hair/showering.
Once again, I’m lucky to have supportive friends and family. Things that help me deal with depression/anxiety include doodling, crossword puzzles, reading, listening to music, rewatching Twin Peaks, texting with my nephew, watching old episodes of RuPaul’s Drag Race, and watching movies with my husband.
This Charming Amy 
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