Just need to share.........................

[bam1993]

I am just so fed-up and down!!! I have had to come off my meds due to damaging liver-went into a major flare, and had to have 3 weeks of work-now been put on a decreasing dose of steroids-but as I am decreasing I can feel the Lupus really rising up again-took 10mg today-and the pain is there-hard to close hands-exhausted and really down-have to go to work tomorrow- and do 3 days and am praying I get through it-I so don't want to lose my job-but have phoned my Rhuemy nurse and she has said to take 15 mg whilst at work, and then I have an appt in Jan to see Rhuemy to see where to go next. On top of all this my car has packed up-am not getting on with my boyfriend,( I know he has had enough of me being ill), I have tried today to do some housework to get sorted for Xmas-but I really, really could just cancel the whole thing-I don't think I have ever been this down in all my life....and feel that I am never,ever going to be able to lead a normal sort of life-I am usually so good at turning things around and looking at the good things I have in my life-but TODAY I have had enough!! S*** I HATE LUPUS!!!! sorry, just so needed to say it!

[field]

I am sorry you are feeling so awful, sometimes you really just need to let it all out. At times I just want to scream and another times I just don't want to talk about lupus, hear about lupus or think about lupus, I get sooo fed up and depressed. It sounds like you are under a lot of emotional stress as well as coming off your meds and the combination of those two things are causing your lupus to flare up. it also sounds like you are trying to do too much, pushing your body to its limits. I know you said the meds have caused some liver damage, would it be possible to reduce the dosage at a slower pace to give your body some more time to adjust. Try and take some time out for yourself, have some rest then you will be in a better place to think about things. Also you need to think about the people you want in your life, lupus is a difficult and stressful illness to deal with by itself, you don't need people around who will add stress to that stress. You need people in your life who will give you understanding and support. Remember stress can be a major trigger for lupus flares.

I hope you feel better soon.

[bam1993 in reply to field]

Thank you field-for your response...I am feeling a lot better now....balled my eyes out for about an hour, but after that the kids have rallied, and my car is getting sorted tomorrow by one of my sons friends,,,Boyfriend is getting a bit of shopping for me, and giving me a lift and picking me up from work tomorrow....so maybe, getting upset, and letting it all out has been for the best.....if we put a brave face on (as I had been doing) then I suppose people around us do not really know what we are going through!! Thank you for your kind words-I AM lucky really-my Rhuemy nurse always gets back to me and I do only have to get through until Jan before I see Rhuemy. What meds are you on??? I am not going to worry about Xmas...after all by this time next week it will be all over!! Saying that I hope you have a Good One xx

[Slowmo]

Oh bless you, this jolly festive time is tough for those people who are well and who have no problems, it puts a lot of stress onto people and when you are battling a chronic illness which is often triggered by stressful events it's no wonder you're feeling so low.

Obviously you also have the underlying worry of the liver results too, which although we put a brave face on it does lie in the back of our mind that something is not good.

You are not alone, lots of us feel so dragged down with all the pressures and expectations put upon us, i flipped out tonight on my partner who simply said they were going to visit family this weekend - I responded totally irrationally and cried that I couldn't cope with the shopping, cooking cleaning etc and my response was totally disproportionate! I then burst into tears, and explained that I was exhausted and in pain and felt useless that I couldn't live up to my own standards. Quite often others don't expect us to be miracle makers, but we expect it of ourselves.

I don't know how you're managing work with all thats' going on too, so give yourself a pat on the back for that alone! Maybe take a little time out, rest little and often, and try a little indulgence, feet up and have a mince pie and let those around you help out, after all, xmas is about family and sharing and we should learn to share the preparations and the work not just the joy on the big day.

Take care and merry christmas.

[watercolour]

Hello,

I know just how you feel, the frustration of this illness is awful especially when we want to get on with life and trying to keep up with the season and events... I started my Christmas planning in October and have done a little each day.It is also quite sad for me as I am a musician but due to lack of muscle power cannot play in the seasonal carol concerts etc., so it is double whammy... It is such a lonely process and the lack of understanding still in the medical profession is mega. I so aware of how you are feeling and in that I can sympathize - please give yourself time and rest is key... today, I had a complete duvet day and didn't feel guilty but rested. There are emotional stages in this disease one acknowledging the process itself and then coming into acceptance. It has taken me a long time to get to this stage and like you, I want to do so much .I hope your work understands your dilemma too? 2 days to go and hopefully rest will come for you. You sound young and that is on your side as there can be good remissions providing you take care. I wish you a rested holiday and a happy Christmas and a flare free 2014. WatercolourX

[jeevan05]

I know its so hard, but you have to take each day as it comes..its awfull and we all understand how lupus makes us feel like crap lol.. I suffer in my shoulders and arms I sometimes think will I ever get my arms back again the way they orignally are, but no chance..im 39 was diagnosed in may this year..iv got two jobs I don't know bow I manage also 2 young chdren 8 & 12.try and not be hard on youself its no your fault remain positive..enjoy your life to the full U only get one chance..as for ur car.its only material..sooo hey enjoy Christmas.. Take care..xxxx

[mstr]

Hi Barn, so sorry that you are having a very hard time of it. It's not easy that it is Christmas and so it is all the usual extra pressure that comes with that, plus the cold weather and then your lupus flaring. Please don't be hard on yourself. I am like you and find it so hard to ask for extra help but I am learning that when I flare up I just have to be honest and share this with family and friends so that they can take over. I hope you are going to get some time off for Christmas.....and until you get your rheumy appointment it is time to put your needs first. I choose foods that are easy to prepare (boxing day it will be cold meats, beetroot and bread rolls that can be par baked or nice cheese and biscuits. I try to do nothing much and just rest and watch easy watching films (something feel good), use my pain killers, heat bags and do very little. It's horrible that you are suffering at this time. Please look after you though. If you can take time off work then do (don't feel guilty) be honest with family and friends and as always know that this is the storm and it will eventually pass for a while. Hang on in there and never ever worry that you have had a rant on here as we have all done so. Sending you a big hug and strength to get through the rest of December until your appointment xxx

[Hidden]

I feel very sorry that you feel so ill and low, I am glad your partner has helped a bit, can you not get help with the housework, either privately or through the council? Its very difficult not to be able to live up to your own standards, as it makes you feel a failure, I had this problem (still do at times) . I try to pace myself, but it is frustrating as you say. I hope you get sorted out with the pain especially, and your liver problem., best wishes