Dose anyone find it easy working I do a 16hours job a week but finding it hard at the minute I am on mycophenolate 500mg 2 twice a day

[diane46]

[janjan78]

Hiya diane46

I was working full time & it took a big toll on my health, after much deliberation & tightening the finance belt we managed to reduce my hours to 16hrs on 4x on/off basis......sooooooo much better my life is a lot less stressfull......I'm not going to lie I do have days where I could quite easily curl up & stay in bed but I force myself & I know I hate it at the time but I know it's keeping me going......there are good days & bad days but it depends on where I'm at in a flare........good days are great but bad days are REALLY bad.......I'm fortunate to have VERY understanding employers & a husband who splits all the chores 50/50 and my son is pretty good for a teenager!!! lol

So in answer to your question there are days I can barely pick my head up of the pillow and those days I'd say no it's not easy working & you're by no means alone in thinking that it's hard....but I enjoy my job (not many can say that!) and the good days push me through the bad ones

I hope you can work on but don't feel a failure if you can't bear in mind the spoons theory where we lupies use most of our spoons just getting up & ready to go to work which is something most people take for granted.

Wish you well.xxx.

[diane46 in reply to janjan78]

Thank you .you put it all in words that's how I feel most days

I am newly diagnosed with sLe just finding my feet I've been doing my job for 14 years and hopefully I can carry on

[misty14]

Hi Diane46

It's tough having Lupus and trying to work. Could you reduce your hours further to help and if you went to your local Citizens Advice Bureau they would do a benefits check to see what other help you could be entitled to. To maybe help your household finances. Worth thinking about. I hope Myco starts to work as your newly diagnosed, it's a very safe and effective drug. Maybe your dose could be altered to help , it's a constant juggling act!. Good luckX

[diane46 in reply to misty14]

Thank you x

[Paul_Howard Partner LUPUS UK]

If you haven't already, take a look at our employment guide to see what extra support might be available for you - lupusuk.org.uk/latest-news/...

[Kaiboo77]

I'm the same I do 2 x8 hrs a week and struggle but I fear if I worked it over more days I'd be more stressed x

[lowicklady55]

Hi Diane, I work in a warehouse...asda home shopping. I was on 22hours, but have been upped to 37 hours. I find that Mon and Tues are quite boring and I have to stand around a lot as there is no seating and am quite relieved when it's break time. I work 5 days Friday to Tuesday and am glad when 6.15 comes as the last 3hours drag when every one has gone home or out in the vans. I am restricted at the moment as I have an aneurysm on my aorta, so no heavy lifting. There are only so many times you can sweep the warehouse floor! but hey they are paying me for it.