My first post..... | Lupus Forums at The Lupus Site
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My first post.....

Discussion in 'Chit Chat' started by Hazelwah, Jun 7, 2010.

  1. Hazelwah

    Hazelwah Each day as it comes!

    Hi this is my first post/visit to this site.
    A friend of mine has been told she may have Lupus & I just want some tips/advise on how to be a good ear who understands.
  2. doris999

    doris999 Registered

    Hi, and welcome,
    just by being here shows that you are an understanding friend, Read as much info on this site as you can, ask questions.
    Find out what all her symptoms are then you can help her to adjust her life style if needed, one of the best things you can do is just be there for when she needs you. and for her to know that you are there to talk and to know that you understand what is going on.
    Understanding her symptoms and why sometimes she can't go in the sun or can't go out on a girls night out cos she is so fatigued.
    There is a short story, the spoon theory i can't remember who wrote it, but it is on this site. I'm sure someone will show you were it is. It will explain a little about how we cope with lupus.
    I hope this helps,
  3. pippa10

    pippa10 Registered

    What a good friend you are, Sandra is spot on with you rearing the Spoon Theory if you can't find it on the site if you google it, it 'll will come uo.
  4. keebler

    keebler Moderator

    Hi Hazel welcome to the site.

    It is great you have come here to learn in how to help your friend.:)

    Learning that you have a chronic illness is one huge roller coaster ride of emotions. It is like a grieving process.:( Then you will feel relief that you know what is causing all this pain. (our emotions are all over the place)

    Learning about lupus is great then you will learn to understand what your friend might be going threw. (I hope she doesn't have lupus) Sometimes we like to be left alone or need someone to talk to.
    Lupus fatigue is like you will ever imagine. Only a fellow lupus suffer will know what I am talking about. It is like when the balloon is flat and doesn't have any air left. Well that is like us when we get the lupus fatigue, we either go lay down or fall down right on the place that we are standing on.

    Please tell your friend that she is welcome to be here too.
  5. Katharine

    Katharine Registered

  6. Jessica1

    Jessica1 Moderator

    Hi Hazel,
    Welcome to the site - what a good friend you are. The very fact that you're interested enough to help your friend should speak volumes to her. I think I can speak for many when I say that one of the issues we suffer from is not wanting to keep talking about the differing ailments we experience that can change daily for fear of sounding like a constant moaner or a hypochondriac! So being there for her and accepting what she says and being able to take things at her pace, I think is really important.

    I have found it very difficult to explain to friends and collegues, but for those who have had children, I try to expain the fatigue similar to the tiredness I experienced in pregnancy when there seems no possibility of keep your eyes open for love or money! Then on occasions, add a bit more to that level and you're about there. This is obviously just my experience but I thinks it's helped some of my friends to at least get some idea.

    Well done for being such a great friend - maybe you could direct your friend to this site too? She'll find a great bunch of people who give lots of support and advice. I know I've found it invaluable.
    Best wishes to both of you,
  7. doris999

    doris999 Registered

    Thanks Katharine, I just could'nt think good yesterday as to where it was, lol, Lupus head on .
  8. Hazelwah

    Hazelwah Each day as it comes!

    Well I do try to be a good friend & will continue to be.
    Having a diagnosis of something like this is a hard thing to get to grips with, I think it's a sure thing that the GP concerned is correct, he was with me.
  9. Hazelwah

    Hazelwah Each day as it comes!

    Yes you are right about this being a grieving process, I felt like this when I had my diagnosis of I do understand the fatigue side.
    I hope I can support & just be here for my friend.
    I will get used to this forum I'm sure, I'm used to the MS forum, but of course this one is different & so far I like it.
  10. Hazelwah

    Hazelwah Each day as it comes!

    And this must be how I reply to individual messages!
    I will get it right in the end!
  11. doris999

    doris999 Registered

    Did i write my message wrong!!!!
  12. keebler

    keebler Moderator

    Hi Hazel,

    I am sorry to read about your MS diagnoses.:hug:

    No you don't need to use the quote like above.:) It makes for easier reading when you don't add that quote from an individual. It also makes the reply extra long. It runs smoother when you just reply without the quote.

  13. KarolH

    KarolH Registered

    Hi Hazel,
    What MS forum do you belong to?
    I hope you find it as useful to you as this site is to us.
    Your a great friend and I am sure since you have MS you will be a good listener and will understand the up's and down's.
  14. Pink Pearl

    Pink Pearl Registered

    Hi Hazel,
    Welcome aboard. You are doing just fine. It isn't hard once you get used to reading the posts and either clicking on the "Post Quick Reply" or "Reply to Thread". Either works.

    You are spot on with understanding that there will be grieving for the person your friend "was" and what her reality is now. I know it was very hard for me to get thru that part and I still get twinges of it every now and then when I want to do the sports I used to love and are not reality now. I have fantasies that things will work out once again, but that is a fantasy and not what is real. Not denial, but I reserve the right to my fantasies. :)

    Provide your friend a not judging support and she will appreciate it immensely. It can be very lonely when the energy to keep up with pals is not there.
    Have a good week.
  15. Hazelwah

    Hazelwah Each day as it comes!

    Thank you everyone for your wonderful replies, they really are appreciated.
    I know form my MS dx in 2006, it is a hard road to travel down & I am guessing here that Lupus is also an unpredictable condition to deal with & nobody can really guide you as to what will happen.
    In answer to the question about the MS forum, I am on the MS society one, I tend to go on the 'everyday living' board.
    Oh can someone please tell me how to be notified when I have a reply.....thank you muchly.

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