Cold Turkey!

Happy 2013 to you all. I am new to this blog site, came in search of you all because I needed some like-minded folks to chat to. I have lupus, but despite living with the dx for 13 years there is still a large part of me that doesn't believe it. Duh! Hence inviting more than 20 guests to our house over Xmas and ending up in bed with a flare. I chased around after everyone like Jeeves on speed; cooking, washing, wrapping, chatting. Just like I used to do. As I lie here in my pit with an aching body and worse fatigue than Rip Van Winkle I feel stupid and angry. Why can't I come to terms with being unwell? Do any of you feel the same? Xxxx

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  • Happy new year to you too. I really hope you will feel better soon. Well I invited my in-laws, my sons and two friends for the 27th December. I was very close to cancelling it, because I did not feel well for weeks before that but at the end I did not. It was not too hectic and I still feel ill but I am glad I went through with it. It was enjoyable and kept me away from thinking how ill I feel. And who knows if I will be ever able to do it again. So no regrets.

  • Guilty as well... went to London to see a show Thurs/Fri and am now aching and tired BUT my daughter and I had a great time and this bloody illness is so unpredictable I might be in bed for weeks after the next flare so whilst the going is good I'll take the chance to do things :)

  • I have only just finally been able 2 accept that yes, I have lupus & I've been diagnosed 4 over 18 years lol! Sometimes we tend 2 push things 2 the back of our minds in the hope that if we ignore it long enough, it'll just go away (wishful thinking!). I've always been very lucky, despite all my health problems but I went in2 a severe flare 2 years ago that is only just coming 2 an end now & I'm not ashamed 2 admit, mentally & emotionally I hit rock bottom (Go back & read my 1st blog).

    Having now finally accepting that yes, I am in actual fact, NOT Wonder Woman & stopped trying 2 BE her, (don't really have the figure 4 the costume any more anyway!) I have found my mis-placed mental strength & positivity that I think is a vital tool in keeping the wolf at bay. Ok, easier said than done when u're hurting all over & just want 2 get under u're quilt & b left alone 2 hibernate, but each & every 1 of us is stronger than we think, after all, we've all had 2 put up with so much no matter how long ago we were diagnosed, we just need 2 find it within ourselves. Good days will return ;0)

  • Hi :-)

    I have been diagnosed for ten years, and ill for eight years before that and I totally understand! Sometimes I catch myself thinking well maybe I don't even have this. I think it is one of the biggest challenges, certainly for me to find a balance between accepting my limitations and pushing myself to have a good and 'normal' life. Sometimes I think it is worth the aftermath to do things that make us feel like us again, but then it's easy to beat yourself up for pushing it. I am stubborn and I think that it causes me many problems, but if i wern't I wouldn't achieve what I do, if that makes sense?! What I mean is I don't think there is an answer that is what you should do, but I hope that things are somewhat better for you soon, take care xx

  • Thank you all for the responses, they make me feel less alone in my nutty way of plodding on despite the lupus symptoms. I have just read one of the posts where someone wanted to stop taking the drugs. I did do this a few years ago, I became so sick of the meds that i went cold turkey. No prednisolone, no leflunomide, no anti malarials etc..... It all went swimmingly well for five days or so.... But then the lupus symptoms started to flare. I ended up on even more drugs than before. A painful lesson learnt!

  • Don't think thsts a bad thing , fighting this no matter what trying to regain life back, on the other hand this is always a realty check , yes I really have this ! Still to this day after nine years say they are wrong. White, male with lupus ? I don't have that kinda luck , chances are better me hitting the lottery. Hang in there, grab the pregnizone and remember this too shall pass. ( eventually )

    David in Florida US

  • Yes i'm a bit like you! I've had SLE for 24 years and its sooo frustrating, there are times when I want to do so much when i'm feeling well and do it only to end up in bed in a lot of pain! I just get so tired, it really is frustrating, but I am learning to manage my time better and try to do things in small doses! But there are still times I forget!

  • I think there is always a delayed reaction with Lupus. I went to a wedding in the summer. I got up and danced a few times. Nothing really strenuous and i haven't danced for years. I was fine at the time. It was later, i found i couldn't sleep. I was in pain all night. I felt utterly crap the next day. I think the trick is to pace yourself.

  • Hmmm, yes! I regularly overdo things. I always feel that I can do things when the reality is that I cannot. I've learned to listen to my head rather than that little voice that says "Oh, I'll be fine". If there is something I really ,really want to do I go ahead and do it even knowing it will tire me out. I work on the principle that this is a treat I am giving myself and something worth paying a price for! If it's not so important I warn myself of the dangers and avoid putting myself in the situation. I don't think you are not accepting your lupus - I think you just want to do the most you can. Learning what that is is the trick! Hope all goes well for you!

  • Happy new year to, I think it takes a long time to accept we are ill and cant do the things we used to, also I find it difficult to pace myself the daft thing is as I go from one job to another I am saying to myself you relaly should sit down for 5 mins but do I? no of course not I carry on and suffer for it, I do hope 2013 will bring you a new start in accepting you have Lupus but can still enjoy your life xx

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