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2 Posts
I have had lupus for 3 yrs now, and i have only just gotten over the stage where i thought it would go away.. I was put on planquinell, and started methrotrexate 6 months ago.
I feel stupid coming here to complain when i know so many of you are in a great deal more suffering than i am...My organs aren't giving out on me, and i know i am lucky. I have fatigue, which i usually find imposible to explain to people, but i guess you guys get it. I have improved..after not beeing able to bath myself i can now go out with friends.
But prior to lupus i could have been anything i wanted: i topped all of my classes and now i am having my second attempt at yr11 and all my friends are almost finnished school. Just beeing 17, i havent lived at all! and now i dont think i will ever do the things i wanted.
TOday i found my goal sheet that we completed in school before i got sick
I wanted to travel, to charity work overseas, become a doctor and settle down and have kids.
All these seem impossible now.
I am trying to do school from home, but i tend to over work myself and then get bed ridden again. If anyone has any advice, i am lost.
I think this is the first time i have ever accepted that i have to deal with this. And i do feel stupid..that i have been in denial for so damn long.
I feel selfish putting all this on a public forum. I have wonderful support from my mum, but she suffers more from this than i do, she is so worried about me so i try to keep strong for her.
i just read all of that and i am ususally not one to complain. I just feel so frozen, that my life is going no where. Everything i used to define myself with has been taken from me now. But i dont need pity, i dont deserve it from you people. I really admire many of you, for the way you cope and help others in these forums.
I need alot of help.
I need to stop being lazy! and everyone around me sees me and believes that i am disabled. BUt i have this dirty little secret, i could do more. I used to work untill i was shaking with exhaustion..but now i dont have the focus as i cant see my goals.
I need advice on when i need to tell friends, or how much to tell them. Friends that i met after getting sick. Particularly boys
I need to know any little hints about dealing with nausea, arthritus (i cant actually write anymore) FATIGUE! and motivation.
I need to know that there is hope.
And i need to appolagise for complaining so much.
Okay on a new note i have found some things that help and that i hope could do you some good as well.
-Vaseline for the nose sores...you actually shove it up your nose. When ever you need, i must do it about 10 times a day. I hardly have any now.
-Emu oil...i dont know where you will find it (i am in australia) but its great on the arthritus.
-Ginger for nausea. I find it helps with the methotrexate. You can find some nice teas. But i often just suck on a small piece when its bad.
Okay if anyone actually read this far thank you
I have had tears streaming down my face all the time while writting this, they have stopped now.
If anyone has any advice for me, please dont hesitate.
Thank you,
Annie-Jean
I feel stupid coming here to complain when i know so many of you are in a great deal more suffering than i am...My organs aren't giving out on me, and i know i am lucky. I have fatigue, which i usually find imposible to explain to people, but i guess you guys get it. I have improved..after not beeing able to bath myself i can now go out with friends.
But prior to lupus i could have been anything i wanted: i topped all of my classes and now i am having my second attempt at yr11 and all my friends are almost finnished school. Just beeing 17, i havent lived at all! and now i dont think i will ever do the things i wanted.
TOday i found my goal sheet that we completed in school before i got sick
I wanted to travel, to charity work overseas, become a doctor and settle down and have kids.
All these seem impossible now.
I am trying to do school from home, but i tend to over work myself and then get bed ridden again. If anyone has any advice, i am lost.
I think this is the first time i have ever accepted that i have to deal with this. And i do feel stupid..that i have been in denial for so damn long.
I feel selfish putting all this on a public forum. I have wonderful support from my mum, but she suffers more from this than i do, she is so worried about me so i try to keep strong for her.
I need alot of help.
I need to stop being lazy! and everyone around me sees me and believes that i am disabled. BUt i have this dirty little secret, i could do more. I used to work untill i was shaking with exhaustion..but now i dont have the focus as i cant see my goals.
I need advice on when i need to tell friends, or how much to tell them. Friends that i met after getting sick. Particularly boys
I need to know any little hints about dealing with nausea, arthritus (i cant actually write anymore) FATIGUE! and motivation.
I need to know that there is hope.
And i need to appolagise for complaining so much.
Okay on a new note i have found some things that help and that i hope could do you some good as well.
-Vaseline for the nose sores...you actually shove it up your nose. When ever you need, i must do it about 10 times a day. I hardly have any now.
-Emu oil...i dont know where you will find it (i am in australia) but its great on the arthritus.
-Ginger for nausea. I find it helps with the methotrexate. You can find some nice teas. But i often just suck on a small piece when its bad.
Okay if anyone actually read this far thank you
I have had tears streaming down my face all the time while writting this, they have stopped now.
If anyone has any advice for me, please dont hesitate.
Thank you,
Annie-Jean