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It’s been a very low energy week for both myself and my partner. I’m caught in a cycle of feeling like I need to rest and being incapable of doing basic life upkeep (dishes, cooking, laundry, etc.) and not being able to rest because the house is messy. I have lost a lot of sleep due to my conditions this week and I have no gas in the tank but can’t rest. Thanks for reading. I needed a vent #nospoons #Spoonie #tired

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Bad flare

Had to miss work again. Which breaks my heart cause I love my job. My son even commented on how exhausted I look and he usually won’t say a thing. I hate having so few hours in a day that I can actually function. Most people are awake 17 hours. Today I had about 3. Today there were no spoons. I’d be angry and frustrated if I had any energy to be angry and frustrated. #Fibromyaliga #FlareUps #frustrated #nospoons #Fatigue #ChronicFatigue #ChronicPain


I went to a #Job #interview on Friday, and since then I’ve had a horrible sinking feeling about succeeding. Should I turn down the opportunity?

I have been suffering with #ChronicFatigue , #ChronicPain , #PTSD , #ChronicNausea , and #ChronicMigraines for years now, with no clear cause, and it’s suspected that I probably am on the #Autism spectrum but mask “well” (bleh). This is just to name a few that are more important. Nothing has prevented me from working and I find working generally enjoyable. Previously, I was working for a 4-star hotel, and it was really starting to wear on my body and it made it more apparent to me that my fatigue and pain were just getting worse. Due to #COVID19 I was laid off for “restructuring”, and I’m now #Jobhunting . As a result, I had a second interview for a Patient Care Coordinator position on Friday, which seemed like a great fit for my skill set. It involves putting together financial plans, explaining the cost and the benefits of treatment with patients, and going over insurance. But after going in person, I learned that they actively want me to be getting up and down and going into patient rooms regularly as well as they really are aiming for that whole “type A bubbly personality thing” and I left the interview so exhausted I could not believe it. I usually do really well post interviews and this has not happened before. I ended up having a crash, #nospoons nap for several hours once I got home. And this nagging bad feeling just hasn’t gone away. I think I could absolutely do the tasks of the job, but I don’t know if I have the energy to keep up with that kind of bubbliness. I’m working with an employment agency to take most of the labor out of finding a job so that I can be more particular about the work I’m going into to make sure it’s something compatible with my disabilities and being able to bring my #ServiceDog back to work with me. (Which he would not be able to do in a healthcare setting where I’m entering patient rooms.) I had several hospitalizations while trying to work a job that would not allow my service dog because I “look” able-bodied (even though I use a #Wheelchair probably 30% of the time).

Should I turn down the job if I’m offered it? I’m really conflicted cause this is a feeling I’ve not had before and I just need advice from people who aren’t simply pushing the “you just feel like you couldn’t do it” and are neglecting that I AM #Disabled .


How do you maintain work? I am 45 with a relapse of UC pretty steady for months now. I have very few days that I can pull my self from the bed.

Its been months of this and a combination of recently being diagnosed with polyarthritis. I have Fmla but am not getting paid anymore for time off. I’ve been waiting on an appointment next week. I do not have any support. I have isolated myself and that is my own fault. I just want to feel well again. Get back to work and back in life. #nospoons #findmyselfagain #UlcerativeColitis