Lilies and Gladrags

I am a writer. I am a dreamer. I am a geek.

Most importantly, I am alive, and I am living.

"Go confidently in the direction of your dreams. Live the life you have imagined" - Henry David Thoreau

To sandwich, or not to sandwich… that is the question.

Gonna miss this nutter more than words. ❤️ #RNOH
Beautiful anniversary present from a wonderful bear. ❤️

From the “Chronic Perseverence” Facebook page
Ponnnnnddddd at #RNOH!

Unfortunately, I don’t think many male spouses would be open to hearing or doing things from my point of view. I do all of the chores, errands, cooking, cleaning, laundry, keeping track of medication, making sure she stays hydrated, giving her back rubs, neck rubs almost every day, making sure as much as possible I can get off work to go to all of her doctor’s appointments with her…all while working a full time job that is very physically intensive. To me, we’re in a partnership, and we should share the burden of each other’s lives.

While from an outsider’s perspective, it may seem like I have a disproportionate amount of the burden because I do all of these things, she has this condition and significant pain that is an additional burden in our relationship. I can’t take on the burden of the pain, but I can take the burden of the chores. To me, this makes it an even distribution of burdens. I’ve seen what happens when she tries to do the chores, etc. She’s significantly worse than she was before. I would never doubt her because I love and trust her.

For me, caring for people is something I’ve done my whole life. I was 11 years old changing my grandfather’s diapers, I was 13 years old helping my mother through chemo and then taking care of my ailing grandmother when I was in high school. I’ve worked in senior homes before, and I work in the service industry, so caring for and helping people is what I do. Doing the extra work isn’t a bother; what bothers me is seeing her in pain and emotionally down and me not being able to do anything to take that away. Would sometimes I like more free time or an extra night? Sure, but I chose to spend my life with her, no regrets. So, I cherish every moment I can to make her forget that she has to live with this lifelong condition.


My husband on why he doesn’t mind doing all of the chores, laundry, errands, all while working a full-time job (I work too). Many of my friends with EDS have unsupportive partners, so he wrote this to our support group. (via enceladosaurus)