LUPUS please, please go away I fear to see another day.A "flare up"where is the break?? How much more can I take?

LUPUS please, please go away I fear to see another day.A "flare up"where is the break?? How much more can I take?

I am sick of complaining sick of hearing myself say"I dont feel good....I want an end .I want to know this will stop.I want be be ME again.II have all this drive and ambition but I'm stuck in this sick body.I use to be another person not who I see in the mirror now.I use to have my own place 2 cars.I moved out of my parents house when I was 17 I was a go getter .I'm not meant for this life.I grew up the a bad neighborhood and got an apartment in the suburbs of cleveland "Parma ohio" ..I'm 32 now I lost everything from being sick..I gave up my Father made me get SSI thank god for that! I couldn't work can't work now.But I have to rediscover myself the new me.I have lupus it sucks it painful.I have to see the good...What I have to be thankful for.I have to look in the mirror everyday with tears streaming down my face and say"it could be worse..."You are alive."You have a baby.."Your a Mother and it's ok.."If thats all you can be be the best Mother you can be.."Your not worthless."Pick yourself up and thank god for this opportunity to be here."Some people are in the hospital wishing they had your chance so pick yourself up..I cry while I type this.. I cry while I say this everyday several times a day.But today I will take my pain medication .I will dye my hair to pick myself up..I will smile at my baby and thank god I'm here.

8 Replies

  • I understand completely what you're saying. I understand that you feel like you're living some other poor sods' life and, as a member of the poor sods'club, I think what helped my psyche was appreciating that yes, that was me then but this IS ME NOW. This illness is part of who I AM and I deal with this with heart and courage and soul and HOPE and those I love and value see that and I am proud of Who I AM .

    I know it's challenging and I know it's not what we would have chosen but we deal with it in the best way we can and we know we are not alone.

    Good luck and I wish the very best for you and your family.

  • Hi i know how you feel. I hate the new me but i have learned to accept this a lot of the time. It is during the times of acceptance that i thank god that i am alive and i no longer have to rush to work every day. I have the time to appreciate nature in all it's beauty. I have a grandaughter whom i love more than i ever thought possible. I can occasionally take my dog for a walk and i started to sew. Some part of me thinks that this is gods plan for me. Yeah lupus sucks in every way possible but it has made me see how beautiful life can be when we have to re-evaluate what can really make us whole.

    My lupus isn't well controlled and i hate it. In the down times we have to make the choice do we buckle under the crap or fight for what we do have. Take care lots of hugs. X

  • WOW! Except for the father part.. You just described me. THANK YOU.<3

  • Hello sweetheart,

    I am also crying when I read this. It's better to be on medication then to fell pain. Even though I still don't fell 100 percent but I can still be me.

  • I am totally with you on this and feel your pain so sorry you are so sad and down . I am hoping I can be like josieswolf who Thankyou for your positive inspiration and hope one day I feel like you and can accept and be happy with the new me but in the mean time I struggle on .... Best wishes to all xx

  • HI Julietsmombless2015,

    Have you spoken with your GP or consultant about your low mood? They may be able to offer some additional support.

  • Yes I have and am on antidepressants but its the pain.Its making me down I cant go grocery shopping I cant do anything go anywhere.i just want a break.

  • So sorry you're feeling this way. I completely understand. I also feel like this every morning when I shake a lot and still have to carry on with school run. Don't know what to do half of the time. Still lacking organisations. We have to hold on to God and pray, and hope that it will get better soon. It's so difficult not working. I used to work looking after pts, now I can't understand why, most of my symptoms other than it's lupus.

    Lots of hugs and take care.

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