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Hello All

Discussion in 'Introduce yourself' started by VinylLover, Jul 10, 2016.

  1. VinylLover

    VinylLover New Member


    I have decided to join a forum and although I'm still not 100% sure about it, I think it might do me some good. So firstly, hello! I suppose I should say something about myself. I'm 27yrs old (female) and this August marks a big milestone, as it'll be a decade since my lupus (SLE) diagnosis. The past 10 years have been tough (as I'm sure you'll all understand). My lupus is constantly flaring up and down, I suffer with migraines, fatigue, aching, temperatures and my joints swell (every and any joint/piece of connective tissue). 10 years ago my lupus was much worse, even 4 or 5 years ago it was awful. I was regularly on crutches and had minimal use of hands majority of the time. However, after a new consultant (now at Guys and St T's in London since 2011) and medication and most importantly, learning my limitations I have found it to be more manageable. I take azathioprine, prednisolone and hydroxychloroquine, as well as aspirin for sticky blood. I'm constantly on iron tablets as I'm continually anemic. And I take a concoction of other drugs to counteract the main ones I'm on. (Isn't that always the way, eh?)

    However, lupus is always a burden. Do you find that? I've lost friends along the way who just don't understand why I can't always make it to things etc. Despite struggling through 2 degrees (BA and MA), I am unable to hold a full-time job down as my health fluctuates too much. Which is heartbreaking when I think about the young, ambitious person I used to be, and how life often seems to be passing me by whilst I'm stuck at the sidelines watching. I am back living at home, without the means to go out into the world and live. I have changed since living with lupus. I suffer bad anxiety, I'm now a bit of a hermit tbh and can find social situations tough (something that I never had before). Generally though, I am a positive (if somewhat realistic) person. There's always a solution. Atm, I am working on an accountancy qualification from home, and whilst it isn't my ideal job, it will allow me to find good part-time work and become self-employed down the line. Do many of you have problems with jobs and careers? Any advice?

    My family and close friends are amazing, which is a huge blessing. My medical support is now good, and I could be on the path to a career. All positives! And yet, as is the way of lupus/the universe/poor luck something always knocks you down! I am currently being tested for lymphoma (biopsy due in two days). Whilst I have read that enlarged lymph nodes and other symptoms of lymphoma are common in people with lupus and don't mean that one has lymphoma, it doesn't stop the worrying, the anxiety and the 'what ifs'. Hence, why I am here, on a forum. It's strange to be typing this and to be very honest and open (at least for me) as I am a big introvert and deal with problems myself. But, it's time to leap out of my comfort zone and hopefully 'chat' to some people who understand what it's like living with lupus/long-term illness.

    Apologies for the essay, it's not the briefest of intros.

    J x
    Reggie B likes this.
  2. lazylegs

    lazylegs Moderator

    Welcome to the site VinylLover.

    Holding down a steady job is not always in the cards for us. I managed for 14 years until it became obvious I could no longer continue. It seemed devastating at the time but in the long run made it easier to control the Lupus. Instead I have found other ways to contribute to society.

    It isn't uncommon to have friends drift away even without a chronic illness. Circumstances and interests change. It is however more common for us. Not everyone is capable of being a good listener or showing compassion. My self-centered buddies are gone but a few true friends remain. The friends I make now understand that I may cancel on an outing or need to leave early without getting their nose out of joint.

    I don't put all the blame on my friends. Listening to someone go on and on about their problems whether they be medical, family or so on isn't my cup of tea either. When first diagnosed Lupus was at the center of my world. Now when I share something my friends know I need some support because I do it so rarely.

    Good luck with your upcoming test. I think it is only natural to worry about it. On a positive note one of the medications used for the one type of lymphoma can also help in some cases of Lupus.

    Take care,
    Reggie B likes this.
  3. Jessica1

    Jessica1 Moderator

    :welcome:from me too!

    I have had to adapt my working hours so I went down to part time and have had to make changes to my environment - using a screen for the PC, not being under flourescent lighting at work and being able to work from home when I need to. I know I'm fortunate that I can do this but it really helped and prevented me from having to stop work altogether. I had an 'Access to work' assessment which informed my employers which changes needed to be made. It was certainly worth having done. It's great that you have a supportive family too. Take care,
    Reggie B likes this.
  4. keebler

    keebler Moderator

    Hi J from me too!

    Coming here you have found people who understand what you are saying and experiencing. It is better to come here and talk than talk to other people who really don't understand at all what you are taking about.

    Take care,
    Reggie B likes this.
  5. VinylLover

    VinylLover New Member

    Hi guys,
    Thanks for the comments/advice :thumbsup:

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