u/wellthatsurewasdumb

(Update: Thank you. Seriously. You all made me really glad I posted here yesterday. This is the first time I've ever posted since finding out about all this back in May. Reading your comments made me feel fully understood and seen for the first time since I got sick back in 2022. While I wish we all didn't have to suffer, you all made me feel so much less alone. I was able to get crisis support from my therapist and called my rhumetologist for a sooner appointment so we can discuss symptom relief (she's calling back today). I am going to try to do some art today to remind myself that there are ways I can still get my creative outlet, even if it's at a slower pace.)

I was diagnosed by my rhum with SLE back in May of this year after being debilitatingly sick since 2022. I started Plaquenil in June. At first I had some noticable steady improvements and was able to live life a little more (and I truly mean just a little bit more), but I feel I've hit a plateau as of a couple weeks ago. While I'm not as sick as I was (eg not having nightly fever, and my malar rash isn't getting triggered) I still can't do the things I love. Before I got sick I was making so much art, growing my career, and experiencing so many wonderful things with people I love. Now I am trapped in my house because my body doesn't have the energy to leave.

Since my diagnosis I've also tried other methods in treating symptoms, which my largest is exhaustion and secondary is pain. I've changed my diet around to be anti inflammatory, started taking b and d vitamins, no alcohol, cut sugars out, etc etc. None of it has been enough to not be glued to a chair, bed or couch in my waking hours.

My symptoms are destroying my life, and truth be told I'm becoming very depressed. I have become incredibly isolated since most days I don't even feel like I have enough energy to respond to a text message. If I see friends, which I rarely leave my home, I can stay for 1-2 hours maximum. Maintaining a conversation even at home in person is even exhausting. I just feel so very very alone.

I feel like my life is passing me by day after day. I feel like I'm slowly being forgotten about by my friends the longer I have this disease. I am losing hope and it's been incredibly crushing. I have been crying since I woke up this morning because I desperately don't want this to be what every day looks like for the rest of my life. Waking up, being sedentary, then going back to sleep. Day after day. Alone.

I wanted to ask those who have been living with this disease for sometime: does it get better? Can I have hope that it will? Is there anything that helps with this crushing fatigue? I have another appointment with my rhumetologist next month, but does this warrant me reaching out early?

Any insight would be so very helpful.