One of those days

Anybody have days where every single aspect of your day frustrates you? You get into bed and just think how is this fair? Why me? I don't want to deal with this any more, I'm fed up of being ill, fed up of being tired and fed up of Lupus. It's not that its a particularly bad day, I'm exhausted but no inflammations (which is good). I'm just sick of it.

I mean, don't get me wrong I have such supportive friends and family and I appreciate them all so much, but there is moments where their support isn't quite enough. They do all they can, but they don't understand.

They don't know how much harder I have to try to get out of bed when all I could do is sleep, even after a ridiculously long sleep, how I can wake up and feel as if I havent rested in days.

How a long day can leave my hands and feet in agony and as much as you rub them, take pain killers or try and get on with it, it just doesn't go anywhere.

I'm normally really good at putting this at the back of my mind and carrying on as normal but this week my lupus has stopped me from being able to participate in part of my uni course because I am 'too at risk' and the fact that there is NOTHING I can do about this is what set this all off... It just reminded me I am stuck with this condition and there are times when it really does rule over me.

This is a low day I know, and I'm not always this negative about my lupus. It's the frustration that gets me, how I am at it's mercy and when I think I'm doing well and stable it reminds me it is still there and its not going anywhere.

Sorry for such the moany blog, I just really needed to get this off my chest to a place that I know other people will totally understand where I am coming from.

I hope tomorrow is a better day.

XX

7 Replies

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  • I can't comment on lupus sorry haven't been diagnosed but I think like so many on this site cope very well most of the time and your all entitled to have a moan or grumble.your all remarkable people who put up this terrible disease day to day and if I have lupus I hope I can be as brave and as determined as you and everyone else on here.you all deserve a medal.your coping with this and going to doing a uni course everyone on here would put most people to shame.I'm so sorry you feel so low hope you feel better soon x

  • A good moan sometimes does us good, hope your feeling better today x

  • We all have weeks like you and many worse than you or me,but it does do us good to moan get it off your chest.

    What i would say is never ask why me, because, why not its a negative that you can never find the answer.

    But take care and we are here for you

    Love & Sunshine

    Jan x

  • I felt like that last week and totally understand where your coming from. It kills me having to actually think before you can do anything, or not plan to much in advance incase your ill that day :( and it is very true if your not living it people can't really understand it. Keep fighting it and don't let it beat you. X x X hope your feeling better

  • Totally understand and one of the most difficult things is the unpredictability of lupus. I am still thankful for good days but I am now also more aware not to almost get too cocky as lupus can come around and bite you on the bum just as quickly. The tiredness, depression, aches/pains and you know you are flaring up. It's completely ok to vent as we all do need to at times. I never know why I get a surprise when things flare up again as I should be getting used to it.....but somehow your mind fools you into thinking that you are ok. xx

  • thank you so much for the comments, feeling a bit better today, just taking it easy until I get my energy back, so lovely to have such supportive messages though, thank you so much, they cheered me up :) xx

  • Hello Natalie

    Glad to hear that today is a better day.

    We're all entitled to days when we just get fed up with the whole thing and wish it would go away.

    Never mind, if the lupus doesn't go away, neither do the people on this site. As you say, good to have such supportive people out there. Sometimes you feel unable to do much, but helping others through this is really worthwhile!!

    Margaret

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