I am late constantly for work these days, my boss knows I have lupus and is a lovely boss but he gets uncomfortable talking about it so I constantly make up ridiculous excuses for being late. If wake up earlier, I'm more tired...if I go to bed earlier...I can't sleep...if I get ready on time...bowel issues!...
Feeling so rough is affecting my patience a bit...got a call from the housing association saying my rent went in late and I thought... I don't care
I felt like saying why are you bothering me?...are you ringing me to tell me how you're gonna stop me feeling tired, my legs hurting, my skin falling off, from feeling dizzy?...no?...b*gger off then!
That's better, thanks for reading!!
Sending you all spoons!
Xxx
Written by
steadilymovingforward
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Keep strong and try and get as much rest as you can, have you tried all the usual things to help you sleep / l suppose you have, just be honest with your boss, it's always the best policy and if nothing else it will relieve the stress of thinking of things to say to him
evening! im in a similar situation; I start work earlier (unpaid) to ensure I complete all my evening "jobs" I have to do every shift. I push and push myself as im expected to do them and get asked to do more. my bosses are good to a certain point but I hate explaining (I don't go into any great detail ) how lupus has changed me. (as I get compaired to the old pre-lupus me)
im same as you with dizziness,bad fatigue,headaches,nausea,lead-legs etc etc......but I try to put on a brave smiley face ,yet my "inner dingo" would love to show her face when I get sarkey bitching comments that im slowing down and could do more!?!...........GRRRRR LOL
thankyou for the spoon I will use it wisely, sending you a hug x
Quick update, I decided to come round mum's to cheer myself up and she just made me a bacon sandwich....so scrap the last post, all is right with the world xx
I am a lupie and an employer. I have staff with their own health issues etc, We run a flexi time situation. It works for us and we also have a code whereby when one of us is on a bad day we just come clean and the rest of us just cuts them some slack. we are a small team, but it keeps us all happy. We also do start times to suit the individual.
I know not all business can run like this, but maybe negotiating a different start time would alleviate a lot of your stress. You would then be able to be punctual and less stress would mean better health.
Managers would rather know in advance if any of their direct reports cannot be at work in time or at all, so that they can plan cover - it is their responsibility to deliver, so they do what they can to ensure that responsibility is met. Most people empathise with any illness, although given the unpredictability of lupus sometimes patience can wear thin.
I would not be afraid to speak openly to the manager about the reason for late start or absence but you will need to assure him that you are doing what you can to cover the work another time, or that you have organised with your colleagues to cover that work. This would be a short term solution, though - if this goes on for longer than few months, say, the manager will look to find a more stable solution - for example, by getting you to work less hours, or change your start times.
So try to think of a way where you can be kind to your lupus without affecting your work (to the extent possible) and be proactive in speaking to him about it first. He will have to consider your suggestions and in the end he will be happier to have certainty of workforce.
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Just a moan
Tired all the time 
London lupus centre
Need some reassurance
Freedom at last!
