I hate having lupus.
Fatigue is my biggest issue and it never goes away. No matter if I'm in a flare or not. It's so frustrating knowing how much worse it can be (many lupus patients need chemo and have organs shutting down and such). It's so frustrating knowing I don't deserve disability anything because of the fact that it's just a moderate case. I slept 13 hours last night and couldn't find the strength to wake up. I slept from 10pm-11:30am. Waking up to alarms and ending up sleeping for another 3+ hours in a slumped sitting position because I had fallen asleep when trying to get up.
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I'm glad I'm unemployed at this moment while my fatigue is particularly bad (having left my other position amicably because the nanny position was just no longer needed.) it terrifies me that I have to find a "real job" that I can't change my pace based on my condition and how I'm feeling that day (like I was able to with nannying by preparing activities that don't require a lot of up-on-my-feet time) and terrified because I have to be the sole provider while my husband is in his intensive 1 year Masters of Arts in Teaching program, when I've been fired three times because of issues with my fatigue.
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I wish I could just wake up and stay awake. The only thing that helped me stay energized was my passion for my nanny job, but now no one is hiring nannies in my area. I hate being in this middle area where I'm not sick enough to deserve help, but not healthy enough to hold down a job. I've tried everything. I'm on 5 different meds and a very healthy diet.
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I'm sorry for the rant. But I'm feeling so frustrated. I used to get disability as a teen, but I feel like I don't deserve it now after lapsing from my remission 2 years ago. That I should just be able to be strong and get over it. And I LOVE working. I've been cleaning my house too to bottom every day because I MISS working. But I've been scorned so much, I'm terrified of being fired as soon as anything flares up... yet again. Just because I don't always have the energy to stand for 8 hours, or sometimes my lungs ache so much that I need a seat. I haven't been able to hold down a full time job other than nannying, how am I going to be able to support us until my husband is in the place where he can support us both? 😰😭😭😭
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