This 'bleep' lupus!

Just feel like a little moan!

Why is it when u start to feel better for a few days and then feel like u are back to square one! Feel so exhausted today.

I guess that's just the nature of this damn illness! I shouldn't moan really I've had some better days recently than in the last 10 months. It's just frustrating I suppose.

Anyway moan over, early to bed with the kids again ha! Maybe tomorrow will be one of the better days X

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  • Is it possibly because on those good days you get carried away and do too much? FAtigue in autoimmune disorders has to be managed too - by pacing. There are a couple of "Topics of the Month" about managing fatigue.

  • Lupus is definitely a roller coaster ride, with its many ups and downs. I get very frustrated as well. All I want to be is "normal" again! I often comment on how just doing "normal things" one day can lead to a very fatigued and/or sore/headache/brain fog/feverish day the next (1-3 days). It's like a recovery phase of sorts. I wish I could say I'm getting used to it, but I'm not. I'm just trying to learn how to cope. I def HATE the bad days but feel blessed that I, at least, have some good ones.

    Hang in there and do the best you can!

    Hugs.

  • Moan away! This is the best place to do it. I'm really trying to pace myself, and it isn't easy.

  • I feel the same way... And I agree. I think we get excited and expend too much energy on the "good" days. But, hey, we have to live!

  • I so feel for you, this disease it's so bad. I have awful flares each week. Very high temperatures anything up to 40.5. As you said you never seem to get away from it feeling extremely exhausted for no reason. It can change so quickly feeling just rough one minute then like shit and can't stay awake the next. Don't know an answer to it. I have been like this for over 20 years. There isn't any let up. Just treat your self very gently. Ask for help and grab any rest you can xx 😘

  • Yes, I cancelled an evening at a friends a couple of nights ago and said I still wasn't well yesterday when they'd text. Then today I went to the work Christmas buffet with my kids (10months and 4 years) cos I felt slightly better and just felt like because I'd gone today they all thought I was just making it up or using it as an excuse! This evening tho I'm in pain with my legs and will be in bed very early! Nobody sees this bit! They only see u for that couple of hours that u go out and grin and bear it cos otherwise ud never go anywhere!

    I'm sure my friends do understand cos we are all in the medical profession but I still feel like maybe they think I'm not as bad as I sometimes say I am. Like ud actually make this shit up!! Ha X

  • I know it does make you feel a bit like that when you have a good day . I've thought oh I'm not too bad today I will mow the lawn , half hour later out of breath and aching everywhere for 3 days after .

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