#giraffetalks

Everyone at Christmas was talking about their jobs and career paths and it’s not fair that I don’t get to talk about my treatments and my health journey because that’s all I’ve been able to do the path year. I get that it’s different, but it’s the feeling I feel. I always have to talk about my old job and it makes me feel so worthless and like I’ve accomplished nothing in comparison to my family. Makes me feel like all the work I put in isn’t worth the same as their work because I’m still “lesser” than I was when I was able to work.

I wish I had the energy to cook vegetables in a way that I know I would enjoy. My stomach can often not tolerate raw leafy greens, which in my opinion, is one of the easiest ways to get yummy veggies in, via salad. I love veggies, I just wanna eat yummy ones.

Sometimes disabilities get worse even when you do exactly what you’re supposed to. I was doing my physical therapy exercises for shoulder and collarbone stability. I guess I tired the muscle out because when I went to lean on my arm I injured the tendon that connects the deltoid to the collar bone. Now I have to let it heal before I do my exercises again. When the joint compression happened, it caused a chain reaction that also injured a tendon at my elbow. This is all in my dominant arm and I already deal with daily wrist and thumb subluxations in multiple joints. Ugh

I just wanna find hEDS spaces online that aren’t purely for validating other people. I just want community with people experiencing life similar to me without having to answer questions about whether someone is valid. Like, I get that desire to ask, but I need a space to help prevent mental burnout and isolation. I can’t work due to hEDS & Co. complications. I’m very physically and socially isolated. So sometimes I want to talk about my experience without someone asking if they’re allowed to use a cane or a rollator or if they’re disabled enough.

Shoutout to people whose bowel movements are affected by the heat. I feel like this group is underrepresented in conversations about heat intolerance because people deem it to be taboo or uncomfortable to think about. But as someone who experiences typical heat intolerance symptoms as well as an increase in malabsorption and incontinence in hot weather, I wish I had spoken up about it when I was younger. So to everyone else who deals with similar issues, I see you and you deserve to be heard.