I am posting here for the first time, hoping to find a place to connect a little with those who understand what I'm going through. I have been dealing with chronic pain for at least 4 years now and am just starting to get some answers. I thought that having some answers or at least a real diagnosis would help me feel better, at least mentally, but I am finding that it is now causing me more stress and uncertainty than I had anticipated. I have been to many specialists over the years and started out with an IBS diagnosis (which was a cop-out), then a question of Fibromyalgia (never got an official diagnosis), and now my official diagnoses are hypermobility syndrome, limited scleroderma, and early onset osteoperosis (due to the hypermobility).
I am 32 and feel like I should be out living my life, and I am trying my hardest to do so, but I find that I can barely muster the energy to get to work when I'm supposed to and certainly don't have the energy most of the time to invest in the things that I truly care about when I'm not working. I used to just have periods of pain with some good times in between, but now I'm in at least moderate pain on a daily basis and when it gets bad it gets really bad. I am working part time so that I can go back to school for a second degree to pursue my passion but had to take a break from classes because the pain and fatigue are making it too hard to do everything. I also have a creative business that I am very passionate about and it helps me with a little bit of extra income but I am not currently able to invest the time I want to in order to make it more successful.
I am currently kind of terrified that one day I won't be able to hold a job due to my illnesses and pain. I have intermittent medical leave through work but I've burned through all of my paid time off for sick days and when I really really need to take a day off, I have to think about what bills I won't be able to pay. Plus the next step for me as far as medications go is immunosuppressants and I know those can get very expensive!
Has anyone found any chronic pain-friendly ways to earn some extra income? I'm determined to support myself and keep myself busy, but I just don't think my body can handle full time work right now.
Thank you for reading my late night rant! It's been a rough week and I just don't really have anyone to talk to about it. My friends and family are very supportive but I don't want to dump this stuff on them all the time. Thank you for being here and I hope you all are feeling well today!
I am struggling. My disability appeal hearing is the beginning of September, and I can think, literally, of nothing else. My mind just keeps going over it again and again and again...I spoke with my lawyer this past week. I have my last pdoc appointment before the hearing this coming Thursday. I've gone over and over the criteria for the "listing" I am claiming as my disability, BD, statistics...
I really struggle a lot with being stuck .... Everything takes so much friggen effort that I often really don't want to try at times What tips/advise do you have to get unstuck when you are having trouble getting things done or getting ahead??TY....xo