How do I manage?

I was diagnosed with Lupus yesterday after two years of symptoms. All I have done is read lots of websites and medical leaflets I was given. I have had the symptoms for two years so have experienced living with Lupus (as much as I can) but it is a bit of a shock it suddenly having a name. Although there is a lot of information out there, I don't really know how to deal with it or manage it. I have also been diagnosed with imflammatory arthritis and I have extreme tiredness and weakness, anxiety, migranes and ulcers among lots of other symptoms, I've been given cortisone injections as I can't take the hydroxychloroquine I was given until after my exams in January incase I react to it. But for the past 6 months it feels that Lupus has taken over my life and it has affected every aspect of it. I'm only 18 and it feels really scary not knowing what to do or how to manage with everything and it would be really great to get some advice with how it is best to deal with the fatigue, trying to keep my stress down and even just how to live normally (or as much as possible!)

7 Replies

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  • Hi Becks93,

    Have you had a look at 'Manage Your Lupus' page on our website? It is fairly basic but it might be worth taking a look - bit.ly/rqzmLg

    It gives a few tips on things to avoid that could worsen your symptoms.

    I'm sure that the community on here will be able to provide you with lots more advice. They are a very friendly and helpful bunch.

    If you want any more information about lupus and how to manage it, then send me private message with your address in and I can post out one of our information packs for you.

    Paul

    LUPUS UK

  • Do as Paul Says I have seen the DVD and it is most help full so its worth buying

    But most of all learn to read your body .Gone are the late nights raving ,but you can still have late nights by gentle raving if that makes sense.

    Its all done at a slower pace,you are so young to be given Lupus,but we are all here for you.

    Hope you take up Paul's offer and have information pack from Lupus

    Take care and let us know how you get on.

    Love & Sunshine

    Janxx

  • Thank you for your reply! :)

    It sounds like quite a lot has to change that I haven't really thought about - but I guess I will figure it out at some point.

  • You will,It took me a year to get my head around it now I rule my Lupus not Lupus ruling me so you will also learn that to.One small leap for mankind applies to lupus (now where did that quote come from MMM)

    Take care Becks

    Love & Sunshine

    Janxx

  • (((hugs))) join us at facebook,,,Lupus is real!! x

  • give yourself time to gieve for the old you. not that your not still you. it took me a year to come to terms with it. again i now try as much as possible to control the lupus rather than it control me.

    if your studdying or planning to go to uni, the conctact the disability person. (i here you shout ( im not disabled) but if you fatigue is debilitating there are grants, extra study allowances, computer equipment, someone to type up your disertation, you may be given additional time to hand things in. voice activated sofware so you dont have to type may ease your migranes.

    i would say know your limitations( what really triggers the sle for you) but still try and live your dreams. but ask for help if need to help make them possible rather than not do them at all.

    its ok to ask for help! i no longer see it as a sign of weakness if it means i enjoy life and get to do some amazing things dispite the sle. ive even backpacked round NZ with a firend and driven on 90mile beech. woohoo

    also it will get you down at times thats ok it does to us all its ok to be scared but try to find place like this where your able to say that.

    every good luck in the future

    .

  • ps ive had sle for 12 years and treatments have improved a lot in that time hopefully there will be another massive amount of improvement and new treatment optionts in the next 12 years. sometime it takes a while to fined the right treatment for you. be patient.

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