Diagnosed with SLE in August 2016 I have since been on sick leave and now feel the need to at least try and return to work. Hydrox has kicked in to relieve most joint pain, fatigue is here most days with varying degrees and brain fog is a daily experience too. I'm not 100% sure if I am able to hold down my full time Lecturers post but I want to at least give it my best shot. Luckily I have a 4 week phased return but following this it will be full stream ahead...back to full capacity working. A day at a time, no expectations and a smile is my plan of action........any other advice would be appreciated? I return next week and I am getting nervous but excited too!
Bright blessings xx
TT
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Tripitaka
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I work full time with SLE and fibro. My strategy is eat properly, exercise gently, lots of rest, have a cut off time for work at home and stick to it. Make sure you laugh a lot, surround yourself with good people and stay positive. It can be done. 😁
Hello, I was finally diagnosed 6 weeks ago, i've been working 4 days a week and juggling being a mummy. I've also found the Hydroxy to be kicking in now. Its all about pacing, notice when you're tired during the day, be honest with yourself and others and rest. For me 4 days is too many and i'm hoping to cut down to 3 days in the new year as i'm still taking sick days due to exhaustion every few weeks. Its about finding a balance.
Wishing you the very best of luck returning to work.
Sending you every best wish...am so glad you're feeling your way back into work gradually. I vvv much like how you're thinking.
When will you next check in with your lupus clinic? I ask, because, if in time you find the brain fog & fatigue are making this particularly tough despite careful lifestyle management (pacing yourself etc), this news can help your medics to learn enough about your version of immune dysfunction to give them the confidence to add something more to the hydroxy. this is how my vvv effective combined therapy treatment plan has evolved over the past 5+ years.
So, while you settle back into lecturing, try to keep a little log of your symptomatology & lifestyle management...without pressuring yourself unduly. Then you'll have the info you need to help your medics with the ongoing development of a treatment plan that can give you the quality of life needed in order to continue your career
Thank you Barnclown for your vvv helpful reply That's a great idea, I will keep a journal of my symptoms and self-management strategies (a little reflective log at the end of each day) to explore with the Rheumy team. I am waiting for a date to be seen again by the team, it will be my third visit to date. Some days are better than others, but I am going to take it as it comes as much as possible, and give it my best shot. I love my work, but I also love my life and health too.
I will post again following my adventure back into work
Good luck with your return to work - keep us updated with how you are getting on.
Have you had an occupational health assessment or been visited by Access to Work to see whether there are any adjustments or special equipment which may help you manage better in your role?
We have a couple of booklets about lupus and employment which you may find helpful. You can read and download them at lupusuk.org.uk/working-with... or if you need physical copies, just send me a private message or email paul@lupusuk.org.uk with your name and address and I can pop them in the post for you.
Thank you Paul, yes I have been seen twice by my Occ Health nurse and I have requested a tint on my office window to minimise the sun glare, and I always work with my main light off (lucky I have an office of my own). The lighting may become an issue as I teach in different locations and classrooms throughout the University....but I will have to deal with that if and when it is a problem. Luckily I am having a 4 week phased return, so I shall take each new day as it comes.
Thank you for the links and for your very helpful reply.
Do you get high factor sunscreen prescribed to you? It may be worth wearing it on exposed skin even when you are indoors if you have to work in lots of different locations. It may also be possible for your employers to purchase UV filtering sleeves for all of the fluorescent lighting. You can read more about this in the article here - lupusuk.org.uk/coping-with-...
I will ask about the high factor sunscreen. I luckily don't have rashes but I feel the sun and certain lights do have an influence on how I feel and symptoms. Thanks again, very informative link.
I work full time, but I have the ability to work from home. Also, we have 4 kids! I would say that I'm able to keep up those responsibilities pretty well. But, I can't keep up past that! haha. Meaning, I'm not too social. I also take a nap on most days.
I hope to be able to do some tasks (marking and course administration) at home once or twice a week too, to help manage work/health balance. Well done for keeping your work and family on track, it's good to have a little social too, some 'me' time. Thank you for replying,
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I am feeling positive so fingers crossed - TTx 
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