Not a good day

After a really bad flare last year, I'm finally back in work. I'm obviously feeling better than I was when in the flare but every day is such a struggle, I'm literally fighting with myself to get up and get to work. I live 2 miles away from work and this morning I couldnt even drive myself and had to get a taxi. I'm wobbling all over the place so lucky im in the office all day, I keep getting words mixed up and my typing is awful, its taking me ages to type anything when usually I'm really quick and I keep getting the letters in the wrong order. Im hurting everywhere, I couldnt even wash my hair this morning as it hurt too much to put my arms at head height.

I know even on our good days people with lupus can still feel poorly, a good day is just where we can manage, but surely I shouldnt be struggling this much?

Sorry for the moan, just totally fed up today


6 Replies

  • i'm so sorry you feel this way and so ashamed of myself for moaning as your good day sounds quite a bit like my bad day.i really don.t know much about autoimmune diseases at all and think now might just be a virus that's taking a long time to go.i wish i could help you and every1 else on this site.x

  • Hi I see you also have Hughes syndrome, are you on Warfarin .? Could this be part of the problem too ?

  • Hi, At the moment I'm on asprin. In July last year my medium veins became dangerously inflammed so until they are back to normal the Drs dont want me on Heprin or Warfrin incase it is too much for my veins, but I have wondered myself if the main problem is Hughes syndrome.


  • im sorry to hear youre feeling like this, i know how bad good days can be when youre in the middle of a flare up. hope you feel better after work and have a good relaxing evening

  • Sorry I haven't heard about medium veins being becoming inflamed hope you don't think I am being nosey but what it that

    hope you feel better soon x

  • Hi Daisyd, Im not sure what caused my veins to be inflammed, I think it is still being looked into, all I know is that it restricted my blood flow and has caused damage to my kidneys and brain. My skin came out in big purple blotches, im assuming this was my veins??


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