Hey fellow spoonies!
I have had a really rough year in general and was diagnosed with SLE last May (2023). Following my diagnosis, my husband filed for divorce and now I have joint custody of my two children and I live alone. I work full time and feel like I have to try so extremely hard to do half the things I used to be able to do with ease. My productivity definitely took a hit but luckily I was an overachiever before so I’m still meeting the expectations of my job, even with chronic fatigue and pain. I have started seeing someone and they are really supportive and accepting but I’m trying to take things slow and don’t want them to be my “caregiver “.
The point of my post is to hear from you all. Is there hope? Will this ever get easier? I feel like I’m just treading water to survive but my body is getting tired. I miss what it feels like to thrive. I can’t imagine that I’ll ever know what it feels like to not have pain again. All I see for my future are struggles and I’m scared. Normally I’m a very positive and resilient person, normally I’m the one people go to when they’re having a tough time…
How do you cope with the social emotional and mental health effects of this disease?