EDS is a health condition that is a big part of my life and work! It's a type of genetic connective tissue difference that creates weaknesses in some of my joints that can result in injuries. It delayed my graduation from FAU, made the use of several art mediums painful, and eventually led me to take up watercolor (fortunately, I love watercolor).
I began to have mysterious injuries in my early 20's, which evolved into debilitating chronic pain that lasted for 10 years. I struggled to walk, sit, or paint for long periods of time. Doctors were stumped by me, and I went to A LOT of them. Physical therapy and exercises were the only thing that helped...until the next injury. I wondered why seemingly normal activities would hurt me, and often questioned if it was all in my head. In 2019, ten years after my symptoms began, I went to the Mayo Clinic (in Jacksonville) for an intensive screening, and was diagnosed. The results weren't immediate, but knowing what it was helped me start to learn more about my body. I am incredibly grateful to my family for supporting me through this process, and for encouraged me to keep searching when I felt like I would never find the answers.
Around the same time, I found out that part of my pain problem WAS in my head, but that it's an actual medical condition that can be treated. For years, doctors had suggested that the level of pain I was experiencing was partially psychosomatic, but they didn't know how to help me with it. A doctor at the Mayo clinic also suggested it, calling it a "pain feedback loop", and recommended pain management classes offered onsite. While I was considering the classes I stumbled upon a phone app called Curable (not an add!) and ended up using that instead. I had such dramatic pain relief from learning about it and doing the exercises, that for a time I thought the EDS diagnosis was a mistake. When I began walking again pain-free, without the need of mobility devices, I was ready to believe that all my problems were solved. I was also experiencing burnout from my teaching job around the same time, so the improvements to my health inspired me to quit.
However, to some disappointment, I still experienced injuries while doing seemingly normal tasks. As the years went on, I slowly came to terms with the fact that it was not all in my head and that the EDS diagnosis was very real. Since accepting and learning more about it, I've been able to find resources, avoid injuries, and recover faster when injuries do happen. I'm so grateful that I can now walk, sit and paint generally pain free. I'm able to do some of my favorite activities again, like hiking and kayaking. I'm hopeful that as I learn more I'll manage it even better.
General things that help me:
Because very few doctors or therapists know about the condition, I've had to learn to be my own advocate. Professionals can be very quick to misunderstand, dismiss, or forget my symptoms, and it can sometimes feel lonely to know that despite their good intentions, they sometimes advocate for exercises or interventions that are unhelpful or even harmful. (I recently found a local PT that specializes in EDS. I'll update this when I try it out!) It's was disappointing that no one doctor had all the answers, but over the years I've been able to piece things together with their help, and that gives me hope that I'll be able to keep learning and improving.
One of the most useful things I've learned is how to modify my exercise and activity routines based on the ebbs and flows of my symptoms. Careful weight training seems really important. Most of the exercises I do are things that I've learned over the years from physical therapists, and I generally avoid trying out new ones because they can result in injuries. Over-stretching is usually how I obtain injuries, so it's something that I do carefully and mildly. I generally workout 3 days a week, but that frequency is variable depending on how things are feeling for me, and I modify my exercises based on what's feeling right in the moment. I sometimes go to a gym, and sometimes do home workouts with a mat and resistance bands. I don't do group classes because that's where a lot of injuries happen, in my experience. Plus, it's difficult to always be doing something different from others and be the center of attention. I'm always reminding myself that just because a normal person would be able to do an activity/exercise without issue, doesn't mean that it's the same for me.
Modifications that help me to do art!
For the most part, creating watercolor paintings doesn't pose a huge problem for me. I'm always doing different activities in addition to painting, like photographing references, updating my website, packing prints, and doing workshops/talks/other jobs. The changes in routine help me avoid overusing any one part of my body. The exception to that is large paintings. This is one of my most recent hurdles, and one that I'm still learning to manage. The main problem is a weakness in my shoulder that makes it difficult to pan over large surfaces. I'm still figuring that one out so I'll update this with my findings! (I'll be visiting a PT)
-Painting small works: The best position for me to be in while painting is having my elbow resting on a table near my body. I use a table easel which allows me to move the painting up or down so that I don't have to lift my elbow off the table, and use my adjustable, armless chair to get the height just right and get me as close to the table as possible.
-Painting large works: I'm still finding the right combination of things, but so far I've been able to work for a reasonable amount of time on an upright standing easel, with a custom maul stick supporting the weight of my arm. Standing or sitting as close as I can to the painting also helps. I also sometimes work on the painting flat on a table, which works great for my shoulder, but strains my neck if I do it for too long. I'm currently experimenting with using a telescoping hiking stick as a rest for my elbow, and will be looking into more physical therapy to help further stabilize my neck and shoulder. In the meantime, I'm working on the large pieces slowly, alternating between large and small works, and other activities. (I'll let you know how it goes!)
-Computer: I modify my chair and computer height so that they are optimal for me. Keyboards and mouses don't seem to bother me anymore, but I find that using a tablet with a stylus causes flareups for whatever reason, so I avoid those. For a time I struggled with tendonitis in my elbow and it flared up while typing. I used dictation software for writing during that time, and used special devices that helped take the pressure off the joint. Heating pads also helped. I now do very specific exercises for that area of my body and fortunately haven't had issues with it for years.
-Walking, lifting, sitting, other: I have had extensive physical therapy to help me learn to perform these activities safely, and I've learned to modify my movements to help, such as using underhand movements, stacking my spine and lifting with my legs, taking frequent rests when walking, etc. I also regularly do exercises that help me safely strengthen muscles in my legs, arms and back. At one point I had such great amounts of pain in my knees and feet that I could barely walk through the grocery store. I relied on food delivery services for a while, and one year I used a wheelchair and a knee scooter to help me get around. I think this might also be partially why plants and the Pine Rocklands habitat became favorite subjects, because I could go on field trips with the FNPS and get lots of great plant reference photos during one short trip. This might also be where I get some of my passion for collaboration! For the most part I can now perform most daily activates without issue and without having to think about it, and I am so so grateful that I can take frequent light hikes through my favorite parks.
If you struggle with EDS or mobility issues and would like to swap stories, or art making tips and tricks, feel free to contact me!
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