i need ur advice

hello all i need ur advice. i just got a vulntary job at my hospital. it is once a week for 4hrs. thats very good for me cos i ve been off work for 3yrs. i was ment to start on tuesday but i had a flare and was unable to go. they know about my condition but still i feel bad. i started a course of rhitoximab yesterday and will be having it for the next three fridays . should i wait till after my infusion to resume? i dnt know if they will feel let down if i ask them to shift my resumption in january. or shld i just try and get on with it. i am exhausted. whenever i think am ready to make a move i am knocked down by a flare. it is like getting up a mountain and gettinf knocked down to the bottom. ur advice pls.

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  • Hi Ijeaslike

    Well done for getting a voluntary job after 3 years of ill health. Such a shame that you couldn't start because of a flare. This is what makes Lupus such a demoralising illness!. Only you can decide when you might be able to start but it would make sense to see how you get on with Retuximab and if your better start in January. They should understand as they're a hospital and know of your problems. I'm having to make a similar decision as been unwell since May and not been able to resume my voluntary job. I'm thinking Jan to go back, it's hard making these decisions as our health can change so quickly!. I've got a virus now out of the blue setting me back, does nothing for self-confidence!. Hope I've helped?. Hope your treatment works and good luck for Jan.X

  • thank you. i hope you get better too.

  • Hi Ijeaslike

    Thank you I will. Let us know how you get on with Retuximab and voluntary job in Jan. Will be so good for your self-confidence!. X

  • Its the big question that. My personal advice and what I did when I went through your situation with my 1st chance was went for it and took the day as it came.

    The 2nd time the opposite , I came off because of flare up and never ended up going back.

    So personally , I would go for 1st option if you feel fit enough to go and come home if it gets to much. At least you shown that you are willing.

  • thank you

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