new to lupus

Hi all ,after being newly diagnosed with lupus after 16 yrs of non specific ailments and various consultants (even questioning my own sanity at times)finally theres an answer.Im in the greif with releif stage at the moment and was very interested to read about fellow lupies and how non understanding other people can be .Absolutly do i agree that unless your crawling on your hands and knees do people realise the difficulty of living with this horrid disease ,and often i get the saying ....well... you look well!If only they could experience a day in the body of a lupus sufferer.I however am throwing myself into the most gentle and non invasive way to manage this disease as well as conventional medcine when needed ,im really intereseted to hear of any other people who use holistic ways to manage lupus ?im just in the nutritional side of things at the moment and am reading up on the benefits of antimflamatory diets and also the dreaded effects of excess yeasts in our body ,it would be great to share some tips ,thankyou .......brave;)))

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  • Hello brave

    The first 2 lines of you post say it all. I and many others can relate to this,

    Lupus is all about management, and you must do whatever works for you. Dont get hung up on doctrine or dogma.

    First thing to know is, you cannot fight it head on, its bigger than you, so box clever.

    Next is the learn to spend only half of whatever energy you think you have and invest the rest in your recovery.

    Third; You will get your life back. but you will never run the new your marathon.

    Celebrate every small victory, stand up straight when you can, carry food in your pocket, dont get cold, dont get hot, sleep when you need to. And when you cannot sleep get as much rest as you can - its not the same, but is a good second. Fretting about not sleeping will only make things worse. Avoid the booze, Make notes before you see your doctor - so as to get the most of each visit, make notes of what he says or you wiil forget.

    And dont make excuses for you health or inalbility to do anything - even if this makes you look a total wimp.

    Your life has changed, you have to find what works for you. Having a name for all of this is empowering. Welcome to Lupus.

  • That was so well written. It says it all. I think everyone with lupus will be nodding know agreement whilst reading this. Xxx

  • Great advice though intrigued at the need to carry food around....is it to combat the crashing fatigue that we seem to get? I guess all the other stuff you said fitted but hadn't thought of carrying food around.

  • Thaddeus.. your post is a delight to read. it keeps me going. I like to you saying; box clever! and true to the word..you cannot fight head on.

    take care

  • Thankyou thaddeus for taking the time to put it into great words,im learning slowly but surely ,sometimes learning the hard way but i reckon this is natural when its so new to you??absolutley i agree i cant beat this ,hence the last 16yrs of constant battle ,however i feel like i can at least learn to manage it best i can ,i only wish i could stop worrying about other people all the time,i feel so selfish having to consider myself before others ,its hard!But after watching my mother succumb to horrid awfull autoimmune disease ,and to pass so young at 56yrs ,im determined to approach this in a different way ,i love the comment on you aint gonna run a marathon ......thats exactly what i used to do ,and was my answer to try and fix how ill i always felt ,if only i knew sooner ;(its a releif to hear from like minded people ,thankyou ,good health to all ,brave;)

  • Great writing Thaddeus!! Brave - you will acclimatise to your lupus. Always keep the attitude that you have lupus, it doesn't have you. You'll have ups and downs. You have a name for that awful sapping fatigue, those aches and pains. Day at a time Brave :)

  • Thaddes that hit the nail right on the head thank you for putting all that into words.

    Brave welcome to the group I know you will find a great deal of information, help and support here, so keep posting

  • Nice to be part of an understanding group,keep well guys ,brave ;)

  • Thaddeus your post was very helpful, anyone with Lupus / Sjogens should definately read your post...Keep Posting.

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