Although sleeping helps me feel my best, it is also my greatest adversary. Like many people with Ehlers-Danlos syndrome, chronic exhaustion is a constant battle. No matter how much sleep I get, I’m always tired. Add the fact that it’s crunch time at the end of a school year,…
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Living independently with Ehlers-Danlos syndrome is possible. So is living with a partner. Both require some thought and adaptation. Developing and maintaining healthy relationships requires a great deal of work, regardless of physical health. Using a little common sense and vetting your prospects before committing can help you…
Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others. Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.
Several years ago I learned an important distinction about positivity. For a long time, I had thought that positivity meant ignoring what was upsetting or not going right so that you could “pretend” to be happy. I had always thought that was somewhat ridiculous, because pretending that the negatives don’t…
The past few weeks have been a whirlwind. As part of my job as a college counselor, I’m working with high school seniors to help them make college decisions. As someone who lives and works on a farm, spring is, of course, when chores multiply. May is always exceptionally busy…
I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level under control. This is one reason I find it so frustrating that massage is rarely covered by health insurance. Because my rare disorder doesn’t…
The initial pandemic shutdowns last spring brought my family’s very busy schedule to a grinding halt. We decided to use the time to improve our emotional and physical well-being. We worked on our relationships with one another and inducted a new member into our family. During the spring and summer…
After almost six weeks of being unable to get a massage because my therapist was injured, I finally got back in last week. I really needed it, as I’ve been dealing with a pain flare from getting stuck in the mud at the farm where I live. Most of…
I haven’t been sleeping restfully this week. I’ve been doing that whole wake-up-and-roll-back-over thing seemingly a dozen times a night. I’ve been dealing with a pain flare since I got stuck in some thick, deep mud in a pasture at the farm where I live and nearly pulled my…
Last week, I went to the dentist for the first time since the beginning of the pandemic. I had my regular cleaning just before everything shut down last year, and then dentists were either closed or working at reduced capacity for months. After my fall appointment was canceled, I joined…
Recent Posts
- Walking saps more energy from hypermobile EDS, HSD patients: Study December 18, 2025
- My first physical therapy session went better than I’d hoped December 16, 2025
- People with EDS who have severe pain more likely to use cannabis, cigarettes December 11, 2025
- Trying to understand and manage changing trends in my health December 9, 2025
- Connective tissue damage is severe when EDS meets joint disease December 4, 2025
- My healing journey continues after a physical therapy evaluation December 4, 2025
- Treatments fail to ease muscle, joint pain for most with hEDS, HSD November 20, 2025
- Acknowledging the setbacks in my EDS healing journey is hard work November 18, 2025
- An old EDS injury leads to a miracle pop and free shoulder movement November 11, 2025
- Novel procedure used to repair aneurysm in teen with vEDS November 6, 2025