Hello all - I'm Deb, Sussex UK based. First of all, I'm sorry you needed to put yourself on this blog... but hoping you find it a positive "raft" to cling to in times of need and just for sharing. I've been recommended to join by a wonderful chap (Paul) at Lupus UK so... here I am. I'm newly diagnosed with SLE (as of Feb 2018) but with the (seemingly often) 4yr wait for diagnosis. Once my life lone Raynauds worsened to a scary degree and the vasculitic lesions started and my new younger GP(!) identified my years of low white blood cells and complaint of utter fatigue over and over it was off for the rounds of Rheumatologists at my local hospital. My new Consultant Rheumatologist said I've probably had it since birth. However - I have a Registrar I meet on occasion that is obviously of the opinion I don't have SLE as I am negative ANA. Paul (Lupus UK) sent me a great link for those with this issue and new research that is coming out for better diagnostics: lupusnewstoday.com/2018/04/...
- it's so utterly upsetting to have one Physician saying you have the disease - and another clearly feeling you do not - whilst trying to manage the hell of the symptoms.
I am REALLY struggling with work - Social Work. As you may know, the job isn't for the feint of heart, over 50's - and certainly not with this condition. I'm off sick again, and feeling I just can't hack it anymore. I'm scared. I live alone with a needy cat... although have just acquired a very understanding older man (ie he also has brain fog!). I say older... he's 61 and I'm 55. My Occupational Health Physician says I need to see how the 4 days working from home goes.. (as agreed with my line manager) but frankly this isn't much of an answer - I am in the office lots due to meetings and out in the community for my cases. It's exhausting. Reduction in cases might work too... but most days I'm lucky if I can actually get out of bed in the morning. I'm wondering if I need to retire on ill health grounds... Paul said a lot of 50-60yr olds with SLE feel it's time... I'd like to discuss with anyone who has gone through this in the UK - and will be posting a "please help!" question.
And now, it's time for a lie down.... sorry, think I blathered.
Thanks all and hope you're doing OK.