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As a new member, this is my first blog, even though I was diagnosed at fifteen with SLE.

I was always told my form was rare, as it effects my brain more than I'd usually admit and my nervous system. Lately I've been having more frequent flares and my iron count was a seven the other day so I had to get a transfusion. A nurse told me if I carry on as I am, I will become critical! So I've been thinking a lot about death.

But reading all your posts about depression, and I suddenly feel like I can do this. I wanted to give up fighting, and just crawl into a dark hole and die under my own terms, finally taking control of my body.

So really, I just wanted to say "Thank You" to you all, and ask "Has anyone been told it may be soon to critical to survive?

My blessings to you all. x

18 Replies

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  • Whew! Welcome to this company of friends.....tell us more about yourself, and we will try and support you with positive comment and concern.

    Do you have a caring Consultant? How badly does the illness affect your cognitive functions? What did the nurse mean by critical? - did she give you some practical advice about keeping your iron count at a better level?

    There are times - especially just recently - when I've felt SO ill, that I've wondered how much longer I can go on. You have lived with it for 15 years - so must have learned some coping strategies..... I would dearly love to hear about them. I was working until about 3 years ago, and loving life for most of the time. Now - I'm afraid to wake up some mornings, even though I have a wonderful husband. I know it hurts him to see me like this...... You will find much honesty on this Blog site...we can say things that perhaps we wouldn't want to say to those we love.......

    Bless you too.....

  • Hi Looby.

    I do have a consultant who cares, but it mostly because my Mom works in the same hospital with her and is always worrying and nagging. So I don't feel like I can really speak my mind, even though there's of course, patient confidentiality.

    I've Lived with it for 10 years since I was 15. Sorry if I didn't make that clear.x

    The nurse meant that because of my regular flares, I am quite weak. But I'm also terrible at keeping a good diet because I' a very fussy eater, even though I do try to do non-strenuous exercise.

    I have a partner I've been with for a just over year now and he is great. Even though I was honest with him about my illness, he never saw the effects really until this recent term of flares. We just moved in together before it's started and he's worried he has had some effect, even though I swear he hasn't. Don't know what I'd do without him now and that also makes me a little scared because I was very independent before.

    Now I don't do a lot and feel like a waste of space.

  • Oh dear, I am a little lost for words to be honest, which is unlike me :)

    You must be a very strong lady, as all of us lupies seem to be (men too of course but it seems that either men do not suffer with this disease as often as us women, or men just don't let themselves open up)

    i think we ALL have our moments of feeling like giving up, its tough to fight your own body every day and to overcome medical conditions that raise their heads BUT we all seem to be doing it, and since I joined this site (a blessing if you ask me) it is abundantly clear that when we are struggling with 'life' there is ALWAYS the wonderful support of others here. I know from experience that you can whinge or whine or be happy or sad, positive or negative, it helps each and every one of us.

    So PLEASE never fell alone, and as hard as it is, try to only focus on the positives in life.

    Have a lovely day, enjoy the small things and like all of us........PRAY FOR THE SUNSHINE

    MUCH LOVE

    MANDIE xxx

  • Thank you for your response. It's good to have a whinge without having a look of real concern glaring at me. xxxx

  • I know a lupus person who has this form of Lupus,she is fine and getting on with her life now they have given her the right meds,I don.t know if she has the problem of her blood count.

    It took her about a year to settle down,you know you have a problem with the blood but they will get it right.Keep strong that's what all of us do who have Lupus and believe me we often have a off day or so.

    Love & Sunshine

    Janx

  • Thank you. It's nice to know that maybe it's just a game of tweaking medication to get things back to some form of normality.

    :)

  • Hi SLE 15

    Your not alone my lupus has attacked my brain also! It gives me memory problems, occasional slurred speech, weakness down my left side and nerve damage down my right along with frequent mini strokes :-( its now causing damage and a lot of pain to my left eye. Friday I went to the doctors for my routine blood tests on the way to supposedly going on holiday only to be admitted as an emergency to hospital with a suspected heart attack! So yet another the lupie monster has tried to claim. I'm fortunate as I have a great team looking after me and a neurologist who send me for frequent mri brain scan to keep check on the damage. I know there's nothing they can do to reverse the damage but its good to know I have a team who are doing their best for me. I hope you have supportive team looking after you also it makes a big difference. Good luck and keep in touch with us all on your progress and care. Look after yourself and try not to think of the future, live for today take care and stay strong x x

  • Thank you for your reply. I felt like I was going a little insane!

    The strokes seem awful:(

    I have more problems distinguishing reality from fiction sometimes and memory loss too.

    I have a good team and are glad to hear that you do too.

    Take care.xxx

  • Hi SLE15,

    Im sorry you feel this way, but we are here for you and understand how you feel it can be lonely at times but we are here,Im new to this site and have been encoursged by the welcome Ive had.We do have times when life is awfull Im going through that right now never felt so ill BUT I willcome through it all so hang on in there and remenber you have freinds on the sit.

    Bless you Judithx

  • I agree. The welcome is fantastic! So much support so soon. :)

    I'm really glad I finally decided to open up a bit more.

    Thanks.x

  • Hi there Judith... I don't think I have replied to you before. Sometimes I go for several days without logging on (because of flares and escaping abroad when we can!)

    I hope that, by now, you are feeling stronger and able to enjoy the long awaited sunshine here in the UK. Do you have people around who support you when you are feeling ill?

    Cheers

  • Welcome SLE15 hang in there! This is a fantastic community of supportive people who understand how difficult it can be. It has been a lifeline to me recently and I'm so glad I found it. Looking forward to hearing more about your story so we can offer you more support. xx

  • Hi SLE 15, you and the others on this site are so brave. I hope you get as much from this site as we all do - it's fabulous and I always say at the moment that it's my lifeline. Take care and keep posting xx

  • Thanks everyone for the most warmest and reassuring welcome I've ever received. :)xxx

  • Hello SLE

    Welcome to the site!! I too have been suffering about the same amount of time as you have and am having discussions with my rhemy and support team that lupus is affecting my brain also so I empathise with you. stay positive and good luck!!

  • Thank you. You too.xx

  • I would like to thank everyone that took rime to answer my question about an you have RA and Lupus together. I don't. See my consultant till Jan ,but I will defo be pushing to be tested for Lupus . Not that I want to have it but to reassure myself cos I have so many of the symptoms , especially the butterfly.mask . Reading everyone else's comments really helped and it's great to know that people out ther do know how you feel.

    So thanks again to all who answered , you made me feel a lot better xxx

  • Hi there fellow SLE suffers,

    This illness is a real pig you dont have any idea what will hit you next or where the blow will hit. But the support Ive had since joining this lovely group is really wonderfull ,just knowing others are out there and understand the difficultys and pain helps you get everything in perspective

    and Im so glad I found this group SO I say a big thank you to you all.

    I hope you all feelas supported and wecomed.

    Thank you Judith.

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