It has been nearly six years since I last blogged about Ehlers-Danlos Syndrome. So much has happened since then! So I thought it was time to reflect on the day-to-day with this genetic disorder. How has EDS affected me?
My mornings are full of false starts, but eventually, I drag myself out of bed, remove my C-PAP, and make my way to the couch when my husband goes to work. Every morning, I have a "What's dislocated?" moment, and then I get my first dose of medications in. From there, I have a liquid breakfast, as gastroparesis hates solid foods in the morning. If I'm in physical therapy, at the gym for time in the water, at the clinic for infusions via my chest port, or have doctors appointments, those all happen in the mornings. When I'm lucky enough to not have those, I sleep in.
I'm blessed to be able to work from home with a wonderful accredited homeschool academy. Losing my ability to teach full-time was a very hard blow, but I could not keep up, and I was dislocating joints in the classroom or in the halls due to rushing teenagers. However, I now get to work with students and their families from my home office. I use adaptive equipment like a vertical mouse, voice to text software, a brace to hold me up better, and athletic tape or ring splints on my fingers. On bad days, I work from the couch. I'm exhausted by the end of those hours, though, so end up needing a long nap in the late afternoon.
Most of the daily tasks happen right after that nap. I'll work on home physical therapy, I will try to get a house task done, or I will be outside in my adaptive garden or greenhouse. Regardless, I'm braced up, taped up, and with an electrolyte drink in my hand and phone in my pocket in case I fall. I try to make large batch meals, so there are nights where we have leftovers, as cooking is exhausting. After that, I'm back on the couch, working on my novels or gaming and roleplaying with my friends. On really good nights, I can get some sewing in as well. Sleep does not come easy, due to "painsomnia" and side effects from the medications that keep me alive. I'm up late, even when I want to be asleep.
There is so much I miss, like being able to go hiking whenever I want, or the freedom to run errands without needing ample crash time afterward. I hate the looks I get when I park in handicapped spaces, and I have been verbally accosted for it, even when I had a cane and knee braces and ankle braces on. I miss dairy and nightshades and being able to cook whatever I wanted. I hate being on so many medications, though I do what I can with natural methods too. I own so many braces, splints, rolls of therapy tape and compression garments that I could open my own supply store. I miss being able to look at my future and actually seeing it. So many of us die way too early. I miss the income of working full-time. It has made things tougher for us for sure. There is so much our house needs, and so much we want for it, but we just cannot handle it.
However, there have been some positives too. Without the people I've met in this journey, I wouldn't be in the position I am today. I’m volunteering for Dysautonomia Support Network in their largest Facebook support group. I've also made some amazing friends through this battle. I wouldn't have been able to teach so many about rare genetic disorders (my husband has PKU, so I get to double up on the education!) There are people I've been able to influence positively because of what I've gone through. I also wouldn't have gotten back into sewing, wouldn't have been sewing commission work, and wouldn't have met the Piecemakers, the charity quilting group I volunteer at on Saturday mornings. They keep me going, though I'm on the couch for hours afterward. I also wouldn't have had the time and focus to write novels. Two are already out with a third coming in June and another by the end of the year.
Ehlers-Danlos Syndrome is a beast. It is a heavy burden to bear which affects every part of my life. However, it has made me who I am today.