lost

hi, have been diagnosed with sle for 14 years, and am still struggling to deal with everything emotionally, i often feel that its unfair that i am in constant pain, and my hair keeps falling out, and i am always tired..i am 32 and should be having the time of my life going out with friends and spending time with my 2 kids, yet i feel like i am 82! does anyone else feel this way?

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  • you're not alone. I'm 26 and was diagnosed last year. Since then I'm going through the hell. My life has changed completly. Nothing is the same. I can say now my life divided into before and with lupus. I know nobody understands what we're going through... Before lupus I was full of energy person, was travelling, enjoying life. Now I'm in deep depression, I do not enjoy,life sucks...

  • its simple things with me..i love goin out with friends n dancin..n due to both my hips needin replacin again i in too much pain to walk some days let alone dance..it really gets me down...i feel bad because there are plenty of people worse off than me, but cant help feelin 'why me?'

  • Hi

    Yes life with Lupus is hell you are living with constant pain,and only you know how you feel,Its also a very lonely thing to have becouse we look o/k.

    I wish i could say do this do that but i cannot, some where with in your self you will find a way to cope and live your life in a different way to when Lupus was not in your life.

    I never question why Me, Quite simply why not,as im no better that anyone else.

    Hard as it is, take 1 day at the time,Look back to life with out Lupus now and then,but keep stepping forward with a new you with Lupus and then you will move forward with a different you.

    Love & Sunshine to you all.

  • I can't truly understand what your going through because I do not have lupus myself but my sister suffered with it for years.

    I can say as a family member that it's important to talk to us and tell us how your feeling. Don't bottle it up because otherwise you'll sink deep into depression like she did.

    Don't be afraid to seek help with depression because it part and parcel with lupus so you'll need help with this in order to battle the lupus.

    A great book that helped her and me is 'The Secret' by Rhonda Bryne. You might think it's a load of rubbish but it helped her and it helps me each day now she's gone.

    Please keep smiling people and don't let lupus win!

    I'm doing as much charity work as I can now to raise awareness for lupus. You need to get your family members involved and make them see your pain and help to find a cure for this horrible illness!x

  • i am so sorry that you have lost your sister, may i ask please....did your sister die because of lupus?

  • Life with Lupus is ery frustrating and depressing I totally agree. I'm 41 with 3 children and have found adjusting really hard. It's hurtful when people don't understand because you dont always look ill too. My Lupus affects my skin quite badly awell as my joints and I have a bald patch where my hair falls out. This used to really upset me but now, although not happy with the way things are, I think I have learned to accept them a bit better. You must try and focus on the good days and when the bad days are over try and forget about them. I know this is hard but you cannot let Lupus completely rule your life, it's not fair on you and not fair to your family either. Keep fighting and stay strong xx

  • Great advice Natasha but just remember to take your own advice, as my sister was very good at telling people what she wanted them to hear.

    Unfortunately, in the end Elly, my sister did die because of the lupus but it was actually the depression that took her. Now my family and I have so many regrets. We wished she'd have talked to us more and indeed that we were there for her a hell of a lot more. My mother is obviously devastated and living without my sister is a struggle every single day.

    So PLEASE talk to your loved ones and make them understand when your feeling down and in pain because often we are in our little worlds and we need to be shown.

    I wish that she'd started on the anti depressants but she didn't want anymore tablets because the pile of meds she took for the lupus was depressing enough. I totally understand that but if I could go back I'd ensure she did everything to get rid of the depression. After all, a positive mindset is needed to fight a nasty illness like lupus and without a sane clear mind lupus has won.

    Don't let lupus beat you!x

  • Can relate to this now.

  • Really, I hope your ok and taking positive steps forward xx

  • Wow what fantastic people,,all comments ive read will help me stay focused and strong minded,, thank you for this wonderful site.

  • people in my house dont get whats it like to have Lupus sle, they see u dont its take u tablet , were moving cos off you ur always down so get over it , sometimes i wish i wasnt here just feel so alone.

  • Aw don't ever feel alone hun. If people don't understand make them! And the chances are if they can't see your suffering there not real friends anyway!

    Don't let lupus win or these people who are clearly not good for you. Try and do things that make you happy. I go and see my 22 month old godson when I'm feeling down, kids always cheer me right up. Find something you enjoy and concentrate on doing things for you for a change. Sometimes a bit of selfishness is good for you!

    If these things don't work, don't be afraid of going to the doctors because if you do have depression, it's just a stupid chemical imbalance in the brain and tablets could help!x

  • i found out last yr i had Lupus ,this week i had my 1st Lupus flare that was bad enough to end me in hospital, , got appointment nxt week to see my dr up hospital about my meds..

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