I feel very alone & struggling with my lupus daily

I have made a few mistakes the last few months, choosing love or friends and lost both! But like most of us here I've paid triple cos my lupus is in overdrive!! I have really bad bladder problems, I had a hip replacement in 09 and either that's going wrong or all my muscles and ligaments need put back, there could be a third!! That I've damaged my back! Which also all comes down to my left hip needs replacing! My SLE lupus mean I get infections easily so this is not straight forward with a 10 year old and no friends and the man who promised the earth gone!! I always have headaches I always have mouth abscess and I rarly eat but am a big girl!! I think I've reach rock bottom!!!


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21 Replies

  • Hi Emmalouise,

    I am so sorry that you are having such a rough time of it. It is so difficult when you are so poorly and dealing with a 10 year old too as so often I'm guessing you will be trying to keep it from him/her. With regards to friendships are you able to contact Lupus UK and see if there are any support groups near you. It might be easier if you can talk to people who can empathise and understand what you are going through. These conditions can really take it out on us and I'm glad that you are able to say that you feel low as that is the first step to addessing this and how you can go forwards. I am sending you a big hug and hoping that you can either go to your GP and tell them that you are feeling isolated and low. Emmalouise the only way to go now is up .......you CAN do it, it will be hard at times but if you have this condition you will already have strength of character. You have done the right thing by reaching out to those on the site to help you and to suggest ways forward. Take care and I it would be great to hear how you get on Marion x

  • Thank you :) xx

  • I haven't got any answers but just to tell you there are people out there who care. I am on antidepressants and they really help me, couldn't be without them anyway

    Thinking of you, hope you feel better soon xx

  • I'm on as high as the docs will let me! They do help your right, think I need to get the answers from the dr's and not be told are you sure it's there!! Xxx

  • your never alone on here,bless you,people will come and go but you will always have the love of your child and remember you carnt have a rainbow with out any rain xx

  • I will remember that what a great saying :) xxx

  • hi, i just joined...it is really hard times for you...i have been there also in many ways...the best thing to do is to look after you first and connect with others who can support you and understand...sometimes just talking can help...

    Contact the lupus association and see if there is support available near you...

    I find listening to my favourite music can help...or doing a favourite thing you like...

    Big hug

    I am here for you if you need a friend x

  • Thank you that's really nice of you xx :)

  • Lupus U/K has contacts in most of the UK just give them a ring and they will give you the contact number if you feel like talking to someone who understands.

    Lots of Love & Sunshine


  • I will look into it thank you xx

  • Hi there

    Just read your post and if brought a tear to my eye, really feel for you. Tough times for you, sounds like you need a shoulder to cry on. My sister suffers from lupus and has two small children so I understand, she takes forever living aloe vera drinking gel which she says is fab for her, have u tried it? In fact I tried it as I have an under active thyroid gland and its worked for me to, energy, skin, healthy immune system and much more!

    Take care we are all here for you


  • Aww sorry I upset you, I will google it thank you for your advice and support mea s the world :) xxx

  • I can get you all the info you need on this as I buy it, let me know what you need bless you. I'm ok jut don't like seeing people suffer, I know what it's like to suffer as I watched my mum deteriorate with rheumatoid arthritis, so chin up honey :-) x

  • Thank you! It's a shit life sometimes more so when you can't get the answers you want in all aspects! Xxx

  • Many of us have been at rock bottom and it's a very hard and unpleasant place to be - but at least there is only one way to go ..up! I just wanted to say that I'm thinking of you and hoping things will look brighter ..soon. All the best. Sending lots of :) and big hugs. xxx

  • Thank you, hopefully I'll be on the way up soon! Xx :) x

  • hi hon i realy feel for you i have sle so i know and all the lupas freinds do we are all here for you. snowwolf swansea.

  • Thank you :) xxx

  • So sorry to hear that you are so down... Forget everybody else, concentrate on u feeling better and stronger, for and your child. I hav a 10 year old too and if i am positive and well i can take care of him, doesnt matter how much pain i am in or how low i feel... He gets me through it...take care lots of hugs..xx..u r not on your own..xxx

  • hi hun , u sound like me except my son is now 15 but it it hasnt been easy as he has aspergus/adhd/borderline antisocialable behaviour as well as coping with a mum with lupus, i know its hard , ive just split from a 3 month relationship he too promised the world and it cant be easy for men either espically as i know how moody and angry i get and i try to warn them but as im sure u know its bloody hard, sometime i sit there and cry for no reason and if my son comes down i pretend that i had a coughing fit (i get loads) and it made my eyes water, i was diagnoised 3 years ago now but i still cant?dont ? except it i have a daily battle with myself on why i take these 100 tablets a week , honestly hun ur never on ur own, im o n facebook a lot i have over 500 american friends without thenm i dont know where i would be lupus uk is great dont get me wrong but when ur low at 3am there is always an american lupy sista there for you , if you like to pm me ill add u if you think it will help u best of luck hun x

  • Aww you sound just like me lol!! You won't find me on Facebook as I'm well hidden because of issues lol but would love to chat some more!! Xxx

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