Why?

I feel so guilty that my flare of 2 years (& it HAS been a particularly savage 1) seems 2 b on it's way out & that while I'm feeling more positive & optimistic about the coming new year, so many of u r having such a s***** time. There r a few of u on here that I have spoken 2 (well, TYPED 2) in the last few weeks that I feel I have a common bond with (obviously cos of the lupus etc & all the things we go through, plus the fact that I recognise the stages that some of u r at, emotionally & physically & I can relate 2 them) & it makes me so sad 2 hear how low some of u r feeling & how much pain u're in.

Lupus makes me SO bloody angry at how it affects us all, not just physically, but emotionally & mentally as well, it's such n evil disease that I wouldn't wish on ANY1, not even my worst enemy (don't get me wrong, I aint a saint & certainly wouldn't wish them well either).

I sincerely wish that there was something I could say or do just 2 bring a smile 2 u're faces, 2 make u forget about lupus 4 just 1 minute or make things better 4 u all but sadly I can't. I don't have any funny anecdotes 2 share & I'm s**** at telling jokes so all I can do is send out the biggest possible virtual hug I can, that's warm & soft & comforting 2 u all. I am not a religious person but I will say a prayer 4 each of u 2nite as whatever we've all done in our lives, none of us deserve this crap. U r ALL in my thoughts x

22 Replies

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  • Sher78 ur posts and thoughts and the way u interpret thiings, ur kind words, ur emotional connection are all everyone needs. Ur funny, sincere, kind, caring, slightly bonkers, completely nutty and a bit insane, you makeppeople smile with a simple word and that is more than enough. I personally find ur posts lift me if I am having a bad day. Sending huge massive virtual huggles back to u xxxxxxx

  • Thanks my lovely, u've made me smile ;0) Just decided 2 have a bit of a rage at how s**** & unjust things r 4 us all. At the minute I feel I could take on the world, as long as I keep my morphine handy ;0) & I just really want 2 go & kick lupus' arse so badly (must b having 1 of my psychotic moments as actually do think I'm Wonder Woman at the mo & could destroy the big bad lupus!) Maybe I should have a lie down ;0) x

  • Hi hun

    Jemmy says it all!! I love to read your comments cos they usually contain some little phrase that makes me smile. You also bring your GP / consultant appointments to life so we can visualise you there. (even more so as I know know the latter! )

    You have had to deal with enough in your life already. We're all pleased that things are getting a little bit easier for you at the moment.

    So just keep doing what you're already doing on here cos you are reaching out to so many and it means so much to everyone.

    You're a star Sher!!!

    Take care and hugs back to you xx

  • u always know what 2 say janekins ;0) x

  • Sher

    It's reassuring to know that there can be better times. We're more likely to post when things aren't so good, as we can feel a bit guilty when it is improving. Another rotten thing about Lupus is that feeling better can make you feel guilty. Share the good times too!

    Thanks for the hugs. They are much appreciated.

    Have a good new year and let's hope the flare has settled down.

    A Happy & healthier year to everyone

    Margaret

  • It's true Margareth8537, many of us DON'T post when we're feeling 'ok-ish' but I think it's important 2 share the ups (even though there may not b as many of them as we'd like) as well as the downs, as it can bring hope that sometimes it's not all 'Doom & Gloom' (honestly!) & it's amazing what we can get used 2 & regard as 'normal' given time & the fact we don't have much of a choice x

  • Sher 78 thanks for the kind thoughts and prayers, I just needed a hug today. The emotional side of this is hard to deal with. People say they understand but still expect you to be able to do the same things and at this time I am struggling. God bless you x

  • I think in that case Shanti, I will send u all ANOTHER big hug sweetie ;0) x I think sometimes the emotional pain can b worse than the physically as it's difficult 2 'numb' that so much. I DO think we all have 2 learn 2 b a little more selfish (I understand it's a very hard concept 4 some of us) but I think that's where it all starts, we need 2 take care of ourselves first & foremost no matter how difficult that is 2 accept. Even with my 2 children, who need me so much as Daddy bless him, despite all his best intentions, is a bit crap at cooking, homework, washing, cleaning etc (don't get me started on sorting out their clothes, my kids would look like the mad kids from Borneo if it was up 2 him 2 get out 'non-clashing' clothes. Either that or they'd go EVERYWHERE in fancy dress!) but what good am I 2 them if I'm not taking care of myself first? About as useful as a chocolate teapot! x

  • This is so true, it is so hard to take a step back from what you have done before and still want to do. My partner is also pretty useless at those things. I do find it odd that a man can co-ordinate his own clothes but not that of a child.lol.

    Thanks for your selfless post. You do more than you realise with your kind words and your knowledge. You have a way with words that I know cheers us all up and gives us a giggle too. I think this site is a life line for us all and I know it helps me no end. I just feel I can say on here how I really feel inside and I wont be judged and will be understood by you all. Without you all I dread to think the state I would be in. A problem shared is a problem halved and all that :-)

    Think your right about us needing to remember to post the ups too. I try to as much as there is any ups as I feel I dnt want to just moan the whole time. Lol.

    Much love to you and everyone else on here. May 2013 bring us happier times! Xxxxx

  • Sher, what could I add to the comments already made?

    We are ALL very happy to hear that you are coming out of your flare! You do give us all such encouragement and kind words when we are feeling down that it is only fair that we can be happy for you when things improve.

    PLEASE do not feel guilty, as negative emotion will bring you down. Revel in it, smile because of it cos you have earned it.

    We are all very happy for you huni x x

  • Thanks MandieR x

  • sher!what an amazing time for you to get respite:) xmas yipeee!i would never feel guilty for feeling well ,i would totaly embrace it head on with the biggest smile ever ,enjoy every minuite of it .are you symptom free?how do remissions feel ?i hope you never flare again;))im in 12 months now and have totaly forgotten what anywhere near normal is like ?maybe this is normal for lupus ?and im not in a flare and this is what happens when you have a progressive disease?but im praying it is a flare and it will all get better at some point?keep your positive spirit its nice to hear some good news ,as some one just pointed out ,we tend to blog more when were feeling rotten ,take care sher ,happy new year x.brave;)

  • This is my first (what I would call SEVERE flare in about 15 years so I've been EXTREMELY lucky. I've never been symptom free, but I've always managed 2 carry on with the odd Cocodomal here & there & the odd few days in bed here & there but now the meds r constant. I don't seem 2 have fatigue or feel drained, it just seems 2 b 'tiredness', joints & bones still sore & locking but as long as I stretch them out every 10 minutes or so, it's ok. Muscles still quite weak (thank goodness my kids have passed the age of needing carrying!) & tendons & ligaments have absolutely gone 2 pot but all the pains r 'bearable' with my meds (but then again, u know me & my AMAZING concoction of pain killers!). Admittedly I do have a pretty good pain threshold & I think after all these years I've got used 2 so many aches, pain & niggles that I wouldn't know how it felt 2 b free of them but I feel better than I have in at least 2 years & my head is much clearer (I also think the fact that any headaches tend 2 b more 'Normal' 1's that respond 2 CoCodomal is helping massively!). Things just feel more manageable now & I think having a good mindset has maybe played a little part in that. Just 2 say I have a vision of u brave as a giant pair of lips with a massive teethy smile & a pair of little legs now, just thought I'd share that with u ;0) x

  • lol enjoy new year ,x

  • Thank you so much for your lovely message Sher, you are a star! I hope you stay well, so you can tell us all the crazy stuff you get up to with your new found spoons. X

  • Thanks roobarb :0D (wish I could put a smiley with a massive toothy grin on here. Just imagine a Wallace & Gromit smile!)

    At the minute I am dog sitting my sister's mutt 4 a few days. No offence 2 dog lovers (I once was until my sister got this thing, he's put me right off!) but he is an absolute PAIN, he's like a limpit & follows me EVERYWHERE, even 2 the toilet (then proceeds 2 sit outside the door while I'm trying 2 wee as he scratches at the door & whines 2 b let in with me!). I can leave the house without him, even 4 5 minutes as he howls & whines. My cat has left home due 2 his appearance (not b4 scratching the Hell out of my hand 2 show her disgust while I was trying 2 comfort her. Yeah, thanks 4 that Moj!) & he keeps winding my 7 guinea pigs up by sticking his nose in their cages all the time. I have fallen over him more times than I care 2 remember already (he gets right under u're feet!) & he's only been here since yesterday lunchtime! Urgh!

    Sorry, went off track there! x

  • Girl, you really need to consider writing comic books, honestly. The way you describe stuff is so vivid and funny, you must do something with this talent of yours.

    Thank you for the wonderful thoughts and I'm so glad you are getting a respite, finally! Try not to over do it, though. X

  • I could call it 'The Strange & Unbelievable World of Lupoid Sher Sher' lol! I just happen 2 encounter so many strange people in life, I'm certain I actual live in an alternate universe half the time ;0) x

  • Sher, what a lovely post and I am so pleased that you are getting some respite from this illness at last. For someone like me at the start of a journey with this it is reassuring to have the wisdom of others who have had this illness a long time. Sending you a hug back in return xx

  • Thanks mstr. Obviously I can only speak from experience (plus it does help that I worked with a few Consultants etc) so if I can pass on any info that some1 might find useful, at least some1 may take some comfort from that x

  • Sher, everyone has said everything l wanted to say, you lift my spirits reading your blogs, l look forward to them, and for you to be feeling good and sharing this with us, is just so caring, I am thrilled you are feeling on the mend at last, at least we know we may get there one day, so you have offered us positivity, THANKS, keep the blogs going and a huge hug for you too x x x x x x

  • xxx

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