I'm a 43 year old woman and was diagnosed with MCTD/Lupus with ME symptoms last year though I believe I have had these conditions since 2009. I have always been a busy person, have always worked and studied and am a self employed musician.
I'm finding my working life extremely hard. I work as a support worker forva women's aid domestic violence charity. I am a survivor of DV myself and do believe the stress from this contributed to my illnesses.
I am constantly exhausted with fatigue to the point of tears most days. My work environment is poor, the lighting is terrible and it is warm with no air circulation. The job can fe either painfully slow or stressfully busy. Each day I return home and sleep for a couple of hours. I feel I have no quality of life and am at the point where I'd rather leave my job and not have a wage just to feel human again!
My family can be talking to me and though I hear them speak, I can't understand what they are saying at times - it's really strange. I also have developed tinnitus which is driving me nuts. I have constant pain in my joints and my muscles in my legs and back seize when walking.
I don't know anybody personally with these conditions and I feel really alone right now. It's so hard to explain symptoms and I often look good and rosy cheeked with the lupus rash I get when I'm heading towards a flare.
Has anybody else experienced this? I'm getting very depressed and anxious and so very frustrated!
I'm currently taking Hydroxychloroquine and Sertraline with asthma steroid inhaler and occasional prednisoline and antibiotics for recurring chest infections and pleurisy. I've had five chest infections so far already this year. I'm past myself!
Thanks in advance for your help x