i dont seem to understand it

i was diagnosed with SLE in 1996. i did not make any real changes in my life and carried as usual. in 2005 i had a stroke and its been pants ever since.

i have recently joined this site and i am amazed reading every ones comments. so many of you are so very aware of your lupus, your flares and specific symptoms. i read you speaking about your consultants and to be honest i am envious.

how have you all got so much info? how can i talk to my consultant without feeling that i am using his valuable time up or am wasting it even? i travel to the lupus unit once a year and last year (and i think this year also) i forget all the bad things that have gone on with my lupus!!!

i have had a real rotten few months and have an appointment in march.

6 Replies

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  • i write a summary of what has happened how ever long it helps them and helps me not forget anything improtant

    hope it goes well remeber your worth looking after.

  • It is important to work all the time on finding out about the illness - become an expert and understanding lupus will help you to keep well. It does take a long time but the confidence grows slowly.

    If you only have one appointment with your consultant do make sure that you write everything down, as tatty says and take the notes with you. Just go ahead and ask everything you want to know. I keep a diary too of all the changes to my health, both the good and the bad and also my medication record and doses.

  • Sorry that you are feeling down.

    Personally I write most stuff in my diary (not everything) but enough to keep me focused when i go to the hospital. It s so easy to forget and also to brush off the bad times. I would really recommend keeping notes of your symptoms.

    This site is great, you hopefully when you read people's posts things that you have experienced will start to make sense.

    Be prepared for your appointment and don't think you're wasting their time, after all without us patients they wouldn't have a job.

    Take care

  • wow thank you all so positive, and quick. i will definitely make some notes i used to keep a diary but stopped because it was a bit grim reading! i will start immediately to get some stuff on aper to take with me, thank you all so very much you take care probably be back here soon

  • So sorry you have not been helped much all the comments are exactly right, writing it down Is the best way to remember but I hold my hand up and say I am nt good at it. When I m well all good intentions go out of he window and some how manage to convince my self that I won't be Ill again. Find information and try and educate your self. I find understanding blood results the most difficult for me. Was your stroke due to the lupus, I have had two TIA. and take aspirin. Good luck and keep checking this site. I have had lupus some thirty years and found out more on this site then anyway, nice to not feel only you have so many different symptoms.

  • Hi tatula,

    The advice given by everyone here is great. Keeping a diary of your symptoms and noting down questions you'd like to ask, whenever you think of them, will help you to make the most of your appointments.

    If you'd like to educate yourself a bit more about lupus then joining this site was a great move. LUPUS UK have free information packs available, so just let me know if you'd like me to send you one. We also have a range of books available. You can find them here - bit.ly/xwGu5V

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