Three years ago today I found out what was wrong with my body. Since then I’ve had a ton of grief because I always expected when they figured out what was wrong that they could just fix it like they do on House. It turns out that’s not how it actually works in real life. I have really struggled with the unfairness of it. But I have figured out how to make it work￼￼￼￼￼ for the most part. In April those lessons will be coming out in a book that many of you contributed to.
I remember crying in the food court of the mall in Chilliwack after seeing the rheumatologist and hearing how I couldn’t have anymore kids and I was going to have to change my business and how this wasn’t going to be a quick fix. I still have those moments but I wish I could go back and give that girl a hug because it turns out that lots of it sucks but there is still abundant joy.
I am thankful for the community that I found who are so supportive of me learning to thrive as a woman with EDS. I hope with research there will be better solutions one day.
I have always been a strong advocate for self-care and it seemed like a sick cosmic joke that I would end up at the condition where pretty much all I can do is take care of myself like thanks for making me take my own damn medicine￼￼, universe.
I am grateful for adequate pain management, that my mobility has significantly increased this year and every day I’m learning more ways to make life easier.
I have also learned new ways to explain my condition to people:
– basically, I’m Mrs. Potatohead
– My joints are like an IKEA coffee table that was assembled while under the influence of alcohol. You could put a drink down on it but it’s kind of precarious.￼￼￼
This condition isn’t linear, the things I struggled most with then aren’t what I struggle most with today. It’s kind of like owning a Pinto like you are always finding something that doesn’t work quite right￼ or as expected but this is what I’ve got to work with so I may as well get some badass seat covers and hope it doesn’t all catch fire 🤣
The other thing that I realized is that there’s so much overlap between diagnoses and that diagnoses that are formal are really a luxury. I’m always getting more context for things that I didn’t realize were related and those realizations come to me like when you get into your car after checking out at the grocery store and you realize you forgot to buy tape. ￼￼
Thank you for being so supportive, loving and kind. I appreciate the patience when I share about difficult days, honestly the struggle is so boring to me day in and day out but some days it’s truly unbearable and that’s when I choose to share.
This condition is really difficult but it’s shown me how strong I can be, that it’s okay to be vulnerable and self advocate and if anyone ever tells me I am inflexible I can show them a doctors note that says otherwise