Hello fellow 'Lupies' :D x

Hi,

So what brings me to this great forum is the fact i'm at mt whits end and can't be ignoring my condition any more. My memory is getting worse and my life isn't great at the moment.

Although it's just fatigue, joint acheyness and discoid rashes on my chest and back. I'm not dealing with general life very well. Since being diagnosed with lupus 5 years ago I have lost a lot of so called friends and many jobs and have had several melt downs. Currently signed off work to and I think I've lost my job any ways, it was only a job for the Christmas period. I feel disappointed though.

Ever get that feeling that Lupus just wants to take over even though you don't want it to and your doing much as you can to help it? I wondering if my circle of bad decisions and denial will stop.

So this is the end of 2011 very soon, I am 25 and I live with my parents, in debt and just about sane. I am now getting into to gear trying to get a London based specialist and trying to become a Freelance Illustrator/ Graphic Designer to eliminate some stress and bring more flexibility.

I guess I've always wondered how other people cope with Lupus and life?

:)

( Sorry for the poor writing skills - i'm dyslexic)

6 Replies

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  • Bless you, I think everyone on here feels like this sometimes, thats the 'joy' of Lupus. It is very hard and your story echoes an awful lot on here.

    As most of the advice goes, you can just take one day at a time and hopefully tomorrow will be a little better. Do you have a good GP, they can make a big difference.

    There is always someone on here to talk to, or you can just let of steam which often makes you feel a bit better.

    You say that is only fatigue, its not only 'fatigue', it god, awful totally knackering, complete body fatigue, makes you feel like you have flu only you dont. There is nothing 'only' about it.

    If your GP is good, go and talk to them, they can give you something for the depression, which is common in us lupies.

    Best wishes and hope 2012 is better for you.

    Sue

    x

  • Awwwwww honey,

    It saddens me to read your blog, but at the same time it is like reading a page from my own diary or my life. Lupus can make you feel very isolated, very insecure etc and this coupled with the dissapearance of your 'so called friends' is bound to make you feel like poo.

    My live in partner of two years left me the day I was diagnosed so i do understand!!!

    All I can say is that you have to try to remain strong, mentally, I have been on anti depressants (citalopram) for 4 years now and yes i do have little blips every now and then but on the whole i keep my spirits from going too far under

    I also was sacked from my job in the hospital 3 months after my diagnosis, 8 years ago, and have only managed to work twice since, for short periods of time. I am sure if all us Lupies chatted we have all sadly been in the same position at one time or another

    SO my friend, it is Christmas.....

    PLEASE try over the next few days or two weeks to have a happy heart....to enjoy all that you have in your life that is positive, your good friends, your family and the knowledge that ALWAYS there are people far worse off than ourselves

    Lots of Love and as much support as you can handle

    Mandie xxxx

  • :) Thank you for your responses.

    I have a nice GP he doesn't really know much about lupus but he does listen and does everything I ask him.

    Yeah I lost a long term bf through all the Lupus stuff he tried his hardest to understand in the end I think i let consume me a bit.

    Nowadays I have a new boyfriend and I feel positive for new year and I like to say I feel lucky that my parents taken me in and very grateful for the NHS. And want to send hugs out to all of you this time of year the cold is testing and hope you all have a awesome Christmas!! :D

    *hugs*

    Kirsty xxx

  • hi only found out last year as for friends . What are they. hardest thing i do is taking kids primary school little boy decides to have horrible tantrums every day. love him lots had enough people at school funny looks. odd one says hi which does help loads. The thought of lupus back of my head what will they do when it gets worse. Christmas is hard feel shattered at least worring about school for 2 weeks might do me good need a rest. feeling bit on my own with this no one understands how bad i feel tired etc had a bad cold about a month kids been sick with it as well. be nice make a few friends who understand on here next year please santa xxx.

  • Xxx I admire you tracy! You have kids to deal with you are a strong mum with lupus and sounds like to me your doing a great job. My sister is a single mum and struggling with depression and the like but she doesn't have Lupus and I feel for you. *Hugs*

    She has this society thing in wales where people come into to have cup of tea and talk with her and listen it's for single mums. I don't know if that would be any help? And if there's one in your area I shall get some info on it.

    I can't imagine what your going through cos i'm not going through it but I hope you take care and always someone to listen on here me included! xxxxxxxxxx

  • Hi I think what a crabby time iam are having and with this illness thats is all so consuming it hard to think of anything else but I find reading these blogs has given me hope besause you realise that there is life out there and others going through similar problems, worries and I have lost two jobs to lupus and it stinks that all you hear is you need to get back to work but life is not that eazy. I hope things for 2012 are better for you.

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