Managing work and Lupus.

[ViveLaVie]

I've just been diagnosed with Lupus after years of dealing with muscular pain, fatigue and migraines amongst other issues. I'm a social worker and have been struggling at work as I get exhausted and even thought about giving up work despite enjoying my job. My manager has been really supportive and suggested I think about adjustments that could help / make life a bit easier. I'm not really sure what to ask for to be honest. I don't want to sound demanding by asking for late starts / early finishes / long breaks etc. I get awful flare ups with my condition but just push myself.

If you have Lupus and work, I would be grateful to hear what worked for you in terms of work patterns / hours / rest breaks etc. I love my job but am mentally and physically struggling. Thank you

My DD is just being tested for this and has the same symptoms you mention. She’s currently a student but I’m also worried about her heath and how she will be able to work in the long term.

I have Lupus,Sjogrens,Raynaud's, osteoarthritis,hypothyroidism and anxiety and take medication for all the above. I have had Lupus since 2005 and was diagnosed whilst on maternity leave with my eldest. I gave up working full time and reduced my hours to school hours when the kids were young. I needed an hour or 2 after school run just to rest. I would then start meals after 6 and be in bed for 7.30.
As kids got older I increased my hours to 30 hrs, school hours mon-weds and 9-5 Thur Fri. I found that on the longer days I was struggling to sleep and didn't have the energy to cook so those 2 days were takeaways.
I'm currently off sick as I'm under investigation for epilepsy. If it is a definite diagnosis then I will reduce my hours to school hours again.
I also found that if I was struggling with fatigue and pushed myself to carry on a week later I would end up in a flare. So it was agreed through occupational health that I could take annual leave as and when I needed it. I don't take the piss with this adjustment and it does help when I've gone in but realised I feel crap and come home and can sleep for a few hours. The next day I feel miles better.
Other adjustments made were changing the lights so that it reduced migraines, being allowed to take 1 week of annual leave every 8 weeks. This allows me to catch up on sleep, reset and recharge for the next 8 weeks.
I'm still working because I love my job and also I need the distraction.