Welcome to my crazy life mr lupus!

I have recently been diagnosed with lupus, even though I have been pretty much been suffering my whole life, just far to blinking bone idle to go to the doctors until I was told by my mother to buck my ideas up and go. You know what they say mums are always right, and they are.. If it wasn't for her I would be 10times worse. It's just the word lupus, couldn't really of thought of a better word to describe it "wolf" it sneaks up on you when you least expect it then lingers around and will just not bloody go away! A bit like a dodge bloke you meet in town and he just keeps following you into ever club! My boss (the cow) when I told her I am now a lupus sufferer, she explainded that we are all playing a role in the world of lupus where only I can choose what role I play.. Weather I sit and cry about it or I pick my self up and get on with it... She may be right. But she can do one if she thinks I'm telling her that. But she's also wrong in so many ways. I don't know about anyone else but some times I wanna have a good cry about it and I wanna stamp my feet and shout! We are all human! We are aloud to be in a grump at times, it's totally normal! There are going to be days where we are going to wanna stay in bed with mr lupus all day and there are gonna be day where mr lupus is gonna get his head kicked in cos we wanna go out or shopping or to the pub!! We are who we are and ain't no one gonna change that!


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9 Replies

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  • well you know you are right.

    all the best and welcome to this crazy thing called Lupus

  • Thank you, I am so glad I found this site you wouldn't believe how much help it's been to me!

  • getting a diagnosis is the begining for me its been downhill. my gp does not agree with my rheumatologist so treats me like a leper and wrote notes to flag me when i visit anyone else in the practice..

    to cap it all i am very alergic to planequil and have had very disturbing symptoms. told by my gp to stop taling it and wait until my appointment with rheumy next month.....my life is a living nightmare..

  • What a nightmare! You really are not getting the support you need from your doctor, if I was you I would see if you could possibly see a different doctor. My doctor didn't have a clue what lupus was and I think you may find your GP maybe similar. I think it's total lack of knowledge, we all need to remember that it's not a well none condition and that why we all need to shout about it. Give your GP some hard advise and tell him exactly what you think and how they can help you. But don't forget we are all here for you... I hope this helps a little...

  • Baby girl we are so proud of you and your positive attitude. You are surrounded by people who love you and will always support you." You are not alone " as the song goes. xxxx All you suffers out there you are in our thoughts.

  • i kno exactly how you feel like that i want a stamping ground or just lift all kitchen plates and smash them

    stay in bed and sleep then you dont sleep at nite its a vicious circle

  • I know exactly what you mean! I love a good shout about it, I also think the more you shout the more people listen to how you feel... We do need to get lupus out there more so people understand! Let's all have a good rant and rave about it. Thank you for your comment.. I'm glad you feel the same

  • Hey Button,

    You are the bravest person I know, so tackle Mr Lupus like you do everything in life! I love you and am so proud of you and what you've already acheived, let alone what your going to acheive.

    Love you millions

    Loola xxxxxxxxxxxxxxxxx

  • You already seem to have a good attitude to having lupus,it can be difficult at times but I hope this site helps to support you...as you said we are what we are & can only do what we can...stay strong xx

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