Latest
hEDS and 27 other things
Hello all, I'm not new to The Mighty but I don't post very often and I'm trying to teach myself to reach out more to people who understand how weird it is to be a zebra in a world full of lions....So here goes.... I've had the typical issues that plague EDS sufferers basically my whole life and like so many of you, I didn't know what was wrong with me until I was 43 yrs old (I'm turning 47 on May 3). I have an extensive list of diagnosis (EDS, fibromyalgia, chronic hives, degenerative disc disease, osteoarthritis, bursitis, bipolar, depression, anxiety, panic disorder, etc). I've been battling to get disability since 2019 and just filed again last week. Fingers crossed cuz I'm so over the whole being destitute thing lol. Anyway, I've learned that my pain level sits at a 7 out of 10 on really good days and a 20 out of 10 on bad days, I've come to terms with the fact that I'm evidently going to be exhausted all day, every day for the rest of my life, and I've accepted the plethora of braces and mobility helpers I have to use. I've also accepted that nobody REALLY understands what I'm going through and that I will forever deal with people who say stupid and hurtful things to me, albeit with good intentions. What I'm currently having the hardest time with is the medications they have me on (I've tried soooooo many). None of them touch my pain or seem to effect my depression or anxiety but I'll tell you what they do accomplish...they are excellent at helping me gain weight!! Coupled with my lack of movement, I have gained 60lbs in the last year!!! I've never been a skinny little thing but I wasn't big like this! The only exercise I can currently tolerate is swimming and I don't have access to that right now! It doesn't help that food is my favorite coping mechanism aside from sleep! I just don't know what to do to stop from gaining! My food intake doesn't appear to have any cadence on how much I'm gaining. I've tried diet pills and they did nothing. It's really starting to get to me. My self esteem is already low due to my incapability to do the things I want to do and used to do but this getting fatter and fatter is sending me into a tail spin! Thankfully I have a FANTASTIC support system in my life, one which I doubt I'd be here without, but I wanted to get some advice from my fellow zebras....is anyone else dealing with this issue also? If so, let me know! Thank you everyone for reading along with my giant rant...I appreciate you all!
2 reactions 
