Hi everyone :)
I was diagnosed with lupus "officially" in October of 2012. I am currently 36 years old. The rheumatologist in October told me that I should have been diagnosed 14 years ago which would have been my first flare...so 14 years of not knowing what's wrong with me. My lupus seems to not be nearly as severe as some I've read about. However, I'm having a really hard time adjusting to the constant pain and fatigue. In July of last year I was diagnosed with endometriosis as well, however that seems to be well controlled by the drugs I am on...which carry with them their own side effects.
I am fortunate enough to work part-time hours...however even a 6 hour day leaves me exhausted. I'm starting a second part time job next week...some 10 hour days are involved, and I'm terrified that I will exhaust myself and let the office down by leaving. I'm not sure what to do. I'm a dental hygienist, so physically my job is demanding. I work some days without any breaks, always on the go. If anyone has some information about possible employment from home I would love some information. If I'm to feel like this I'm not quite sure how long I can keep doing what I'm doing.
I'm recently single...my boyfriend of 4 years couldn't really understand why I didn't have the energy to be the girl I used to be...I guess he felt neglected. It's so difficult for everyone in my life to understand that I can only do so much. I have some good days...where I can feel productive for a few hours, like my old self...then inevitably I have to nap for a few hours lol.
I guess I'm revolting against feeling like this. I can't seem to figure out a balance, it changes everyday. It helps to read posts of others with the disease...since a lot of the time I feel like there's 'something wrong with me' and I should just 'buck up' and try harder to do more. I guess I have to work on accepting this new me. I started feeling really bad in the summer of 2011...energy-wise. Then the pain in the legs/hands and wrists kicked in, in February of 2012. I really don't know what is normal. The rheumatologist I saw for the diagnosis basically told me that although all my blood work is positive it's not enough for her to 'get excited about'. She also said that most people would like to take naps so that doesn't mean I'm any more tired than the average person. At that time I could not stay up past 10pm, barely made it to bed most nights, wanted to fall asleep where I was...this is after daytime naps.
If anyone can give me any of advice, anything you've learned through your experiences that can teach me to work better with this disease I would very much appreciate it. Right now, I feel that I'm alone in this.
it may not be what you want to hear..... but I have written a very frank account of my experience with my lupus. it is in the blog section. the easiest way to find it is to click on my name (in blue print), go to my profile, then go to my blog. I fully understand your frustration ...... it took me about 30 years to get a diagnosis. most doctors had no idea how to join the dots, and see the big picture of my health.
I can't access your blog for some reason but your profile gave me perspective. Thank you. It's great to know that I am not alone with this. I appreciate your reply :).