Really fed up and struggling to remain positive with latest lupus flare

I'm in the midst of my most recent lupus and for the first time since my 2005 diagnosis I am struggling to maintain my positive attitude. Since my 3rd flare in January and subsequent kidney biopsy i;ve been on a cocktail of meds (3grams MMF, 30mg pred, 400mg hydroxy, alendronic acid, lansaprozole) My symptoms are bad enough alone (severe joint pain, headaches, blackouts, nightfever, exhaustion) never mind the side effects of the meds. I'm just exhausted and am trying to manage my demanding HR job and be a mum to a feisty 19 month old boy. I am due to go to my best friends hen party next month abroad for a few days and I had been looking forward to this for a year but I have no motivation to go whatsoever. I feel really negative about everything, my lupus rash has re-appeared all over my face and body and now I have to go for an urgent review with my rheumatologist and nephrologist as they feel the meds are not working as they should after 6 months. The latest debate is to possibly start me on cyclophosphamide which petrifies me. I'm 31 and feel more like 71. I sat in work last Friday and just cried in a room which is ridiculous and totally out of character for me. I try to tell people I desperately need rest and more the point, a full nights interrupted sleep which i've not had in years. I am always met with the same response - you look ok. Its rubbish, I look drained, have this bloated rash covered face and am a shadow of my former self. You could ask "am I wallowing in self pity?" i've thought this and told myself to get a grip but I cant. I take my frustrations out on my partner and rather than enjoying time with my boy, I feel like its a chore which is an awful feeling but I don't know what to do. I'll be discussing all of this when I am at the hospital but my god, this is a tough time. I know this is a long process and my last flare put me in hospital and took 18 months recovery to come off the meds so I have a realistic view on what to expect but I just think that the combination of everything can become to much. Long post, long rant - needed to get it off my chest...

7 Replies

  • Well I think you are a star ! !! To be so poorly and work and have a baby to look after to !! I don't know how you do it you must be such a strong person , and I am so sorry you are having such a bad time of it at the moment bless you darlin take care xx

  • Hi I too think you are a star and can totally sympathyse with all you are going through. I have a terrible time with my skin and see a dermatologist as well as my lupus docs and since doing so have felt better than I have for years. I was not aware the lighting in my house could have been making me worse. Low energy light bulbs and flourescent tube lighting all give off U.V. light and if you are photosensitive this will make your symptoms worse. I have now got all the old style light bulbs in my house and have gone from looking like I was covered from head to foot in burns as the rash was so bad to just having a few dry patches now and then, my bloods have improved, my fatigue is not nearly as severe as it was and I am leading a much more full and active life. The other change I made at the same time is to cover as much skin as possible when I go out - I wear something on my head ( I am bald) I wear gloves, a scarf, long sleeved top and long trousers/jeans. When the sun is very strong I stay indoors and any part of my skin that is uncovered I wear at least a factor 50 suncream.

    The docs in the Lupus clinic prescribed methotrexate, folic acid and prednisolone which has been on a reducing dose since I have been feeling well and I am still good.

    Another thing that might be worth trying is Manuka honey, a teaspoon taken each day I know has helped some people maybe this might help you.

    I know that this is an evil disease as I have had it for twenty years and am normally a very strong positive person but there have been times I have been driven to hiding in a corner and crying whilst giving my stress pillow a good thrashing.

    I do hope that you might be able to try the things I have mentioned above and with luck get some positive results, try to get your chin up I know it's difficult but you have us other lupies behind you.

    Take care Madmagz x

  • I agree u r a very strong person and people look at me in the same light so much so that when I say I'm not too good the attitude is she'll be fine well sometimes I need help and understanding as do all so called strong people. Had to tell my boss yesterday again that two split shifts one after the other is too much. Jk2503 I hope you get the help you need to get over this both medically and emotionally x

  • Hi all, thanks for the comments, it is much appreciated. I think some times the combination of everything with lupus and trying to manage your everyday lifestyle can get on top of us and push even the strongest over the edge. I will give the lighting in my house some thought and it is something to look at in the office also. I will also put manuka honey on my shopping list. I too avoid being out in the sun and cover from head to toe. I woke this morning with a different attitude and realised that I cannot let this get on top of me, I've managed for years and it would be a shame to crack now so I will just try to regain my focus and positive approach to this nightmare disease. I believe that a good cry and rant and to get it out of your system does you the world of good especially to those who genuinely understand where I am coming from. It is good to come on this site because it makes you realise you are not alone and there are some real superstar loopies on here. So the support and positive words are priceless! Take care xxx

  • Hi JK The strong words and support from the other Luppies are words I also heralds or you ,It is so good to be strong, but only people in the same situation know that you truly are a star and a very strong person. Flares are not easy especially with a toddler. So you are amazing .I also use Manuka honey it is not a miracle but does help with sore throats etc i have also been taking Vit D in a high dose but honestly don't know whether its the methotrexate now that's kicked in but we do try everything I'm glad your last post was a positive one try to pace yourself It has taken me 30 yrs to learn that but heh we can only live our lives as best we can Take care and hope all improves for you x

  • I am so sorry you have had such a rough time, I wanted to pass on my best wishes, send positive thoughts, love and hugs, because, I really do know how you feel.

    I'm Mandy, and I was the one who posted 'A Cry of Desperation' - AND YES I am still here, still not quite myself but I am here.

    Please be proud of yourself, you are amazing, you are unique, you are still you, whatever this awful bloody disease does to you and with the help of everyone here, you will come out the other side, it may take a while - no lies - it may take a long while.... but you will get there.

    I hate this disease with more passion than I care to share, but I have it, it does not have me - well sometime it does!! LOL

    If I could reach through the computer and hug you, without it hurting you, I would!! Please take my love and the love of everyone who writes and hold it close, so close that it is tangiable and you will be ok.

    You may not always see the sun, but it does rise every morning and you will too.

    Much love. Mandy X

  • You should be proud of yourself. It is so hard having lupus. I too am a sufferer and have APS as well. After having an aneurism and an internal bleed caused by my ovary rupturing, I refused to take warfarin and have been injecting heparin for 3 years. I've had 8 pulmonary embolisms and DVTs, along with optic nuritis, coeliac disease, chronic migraine, joint, lung and cartilage inflammation.

    Despite all this I went on fighting and have an eighteen old son and a fourteen old daughter. I work part time and I have just finished my foundation degree for childhood studies. In September I will be going onto my third year and then onto doing a PGCE. As the disease progresses and becomes more difficult due to fatigue and continuous flare ups, my aim is to become a supply teacher so that I can work throughout my good periods, without the pressure of knowing that I am not letting people down if I can not work.

    It was extremely hard on times looking after children and coping with this terrible illness when they were small. There were so many times when I was so ill and fatigued that I just wanted to sit and cry. However, I just kept fighting and have been lucky enough to see my two child blossom into two wonderful people.

    At the moment I am at a cross roads, trying to find a happy medium to continue doing the things that I have always wanted to do, and can actually say that I have achieved them. I sing in a band, I will be a teacher, I have children, a wonderful husband and despite this disease I have a life and will continue fighting Lupus so that I can continue having a life.

    Lupus is something you have, something you may not have asked for, it has given me the determination to fight so that I can control it and live with it. Without it I may not have achieved all that I have. So I say to you and all the Lupus sufferers out there, keep fighting, even when you feel that there is no fight left, there must be something or someone worth fighting for.

    Love and best wishes Esther x

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