LUPUS UK

Another work day missed!

So, today iwoke up feeling so weak and exhausted. Attempted to get up and get ready for work but couldn't even brush my teeth let alone shower. My body was in pain , when I yawned my face and jaw hurt and I had a headache. I coukd bareky speak to my hubby as it was just too much effort. Back to bed and text my boss ti say I would be a no show. That was 7.30 and the next thing I know is it's 1.30. I stayed in bed all day, managed to cook dinner for my son at 6 and back in bed now. Consultant visit tomorrow and see what happens. I feel my lupus is having much more of an effect on me over the past 6 months. Worried this will mean a change in meds. Have been lucky do far and only on plaquenil, not sure what the next stage could be. Also worried now about work as I just seem to be so exhausted all of the time. Feel so lost at the moment and hard to stay positive. Do any of you have tips on how to manage work and tiredness?

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Sorry to hear you've had a bad one. My day has been exactly the same (minus the 6 year old and hubby). Another day missed at work due to lupus.

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Hope you are feeling a bit better today! :-)

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I also had to do nothing but stay in bed today. I hate being prisoner to my bed. Cancelled tomorrow's session in a recording studio. My once showcase housekeeping is now a disaster. So many huge career opportunities felled during my life due to this %!#$@* disease.

Much empathy and identification for your lost day.

♡ to you.

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Yes a prisoner in your bed but you are not comfortable. Most of the time I am in more pain when I lie down. Sorry yoy lost a day also but more frustratingly your career which you obviously loved.

I guess we have to keep smiling, there mught be a good day tomorrow.

Take care xx

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Sorry you're having a rough time. Extra meds may help. I got an extra 7 years working after starting immune suppressants, so there is hope.

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Did you have many side effects to the supressants? I find it quite scary the thoughts of going on stronger meds. I suppose in a way it's like this is it, no more pretending I am ok, I do have Lupus and it is affecting me.

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Everyone responds differently to immune suppressants. I was ok. I had methotrexate for a few years. They stopped working so I tried azathioprine which disagreed with me, and now I am on mycophenolate. It scared me too at first. Now, I am just grateful that there are medications that help. Try not to stress about it though, as stress will make you worse. Good luck, and let us know how you get on 😃

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