need a friend

[SILENTl]

hi my name is Nadine im 31 yrs old ..Since being diagnosed with sle for over 10 years now I've seen all my friends slowly seem less interested in me nothing exciting going on in my life 😔 i haven't even got that one good friend people always seem to have got one i got my mom to talk too but it's not the same i know everyone has there own lives but just would be nice

[JohnnyBgood]

I am sorry to hear that, I have had lupus for about 7 years if you need to chat feel free

[lisa___s]

Hi Nadine,

I don’t have friends either. I have work mates but not the kind I can talk to. I’m 36 years old next week and feel sad that at this point in my life my old friends and I have all spread out across the country and don’t keep in touch as much.

It’s hard but I have this site which is a massive help because everyone can totally understand your pain and worries.

Always here to talk if you need it xx

[SILENTl in reply to lisa___s]

thank you lisa its is better to talk to people who understand especially when i feel like im crazy with symptoms or issues i have 😊

[whisperit]

Hello Nadine,

I think many of us feel the same. Obviously, an forum like this can't replace real-life friends, but it can be a place to share hopes, fears, questions and experiences with people who will understand some of what you are going through. Maybe that can help x

[SILENTl in reply to whisperit]

your so right im glad i found this site were people can relate just hope i can feel better within myself emotionally soon ☺

[_bunty_]

Hi Nadine,

I know just what you’re going through. I was recently diagnosed with SLE and it’s driven my life to an absolute standstill. I constantly worry (when I see my friends) that I’m boring them because all I’ve really got to talk about these days is illness! I’m 33 and I moved back in with my parents since I first became ill which is humiliating in some ways but I’m close with my mum so she usually manages to cheer me up.

This is the place where I feel most comfortable discussing lupus because you can’t understand it if you don’t have it. We are all here for you if you want to talk.

Lots of love and hugs

Betsy

[SILENTl in reply to _bunty_]

thank you these sites are good because i know im not going mad with issues i have but at the same time when i read people stories and relate to them it hits me that gosh i have got that condition and oh thats happened to me gosh i am sick i still dont think i have totally except it but i don't know what im feeling right about now head not right 😑🙂

[HelenL75]

Nadine

I was diagnosed last year and I have a few good friends but feel I am boring them as at the moment getting to grips with my condition is all I can focus on, I have only recently joined this forum but seems to very supportive folks here and while they can’t replace close friends am hoping they/we can cheer you a bit.

What my friends seem to forget is I have spent the last 15+ years listening to them talk all things children and not once moaned but as soon as I have a topic to discuss I’m a whinger - go figure!

Keep posting and chin up

Hxx

[SILENTl in reply to HelenL75]

everything u said is spot on ive never shared the fact to anyone how i get upset when people around me are having children because im still happy for them i want the best for people but its hard to not be upset cant be helped if its what u really want too this group has got allot of friendly people we all have similar struggles we can relate too and good advise that could possibly help people deal with certain things abit better i know im not alone in this ☺

[Purple83]

Hi Nadine,

I can fully emphasise with your post. I'm only newly diagnosed this year but have been suffering from symptoms for a long time. The pain and fatigue constantly makes it impossible to make plans and then when I do quite often I have to cancel them not to mention that when I do feel like I'm having a good run I spend it first and foremost with my children to make up for the previous day's where I'm too ill around them. On the occasions where I have managed to catch up with friends I have found it exhausting.

I don't have any magic advice for you only to just not give yourself a hard time as I'm finding sle is an isolating illness. I'm at a point now where I've stopped apologising for being ill and look at things with a "are they worth it" view. Your much more than your illness but at the same time when you have a illness that reminds you daily it's there it is a constant battle that unfortunately most don't understand.

I have found hobbies that I can do at home, I now make my own scented wax melts and have started knitting. They don't take up much energy and I can do them indoors at my own pace, on my own to keep me occupied and busy when I'm able to do so.

Keep talking to your Mum, even if you had a roomful of friend's your Mum would probably still be your best friend and the most understanding and supportive.

Keep smiling X

[SILENTl in reply to Purple83]

the only time i feel normal is when im sleeping having a dream don't feel pain feel normal some dreams can feel so real then i wake up and im stiff and in pain so quickly take my tramadol im on the one that is prolonged release but yet still in pain but that is more related probably with fibro i don't know most the conditions are similar symptoms and stuff very confusing 😣☺

[Purple83 in reply to SILENTl]

I agree it is confusing, I'm still learning every day about this new and alien body I'm dealing with. Do you have a good GP and or rheumatologist? X

[Loopyloo43]

Hi nadine. I have had sle Addison’s RA and ssojgrens for the past 20 years. Iniaiatially you find yourself looking fir answers from sites and making acquaintances whom are likewise.and overtime you find you feel isolated but sites like this can be of great comfort to fill the void I suppose I found that I don’t talk about it at home so it’s like it doesn’t exsist and no one ever really mentions it . But you find everyone mentions there ailments. But please if you want to chat xx

[Lindseysusan]

I've just been diagnosed but when I mention it my family they are like no you don't have that. I tend not to mention it now.

[kyliesinead]

I can relate to that Lindsey. My family ask if I still have that 'thing' and when I say 'yes', they look puzzled and tell me that I look so well. I don't want to rattle off my list of ailments so I just smile.

In my personal experience, I feel that a pink or red flush to the face can make me look well, when underneath, every joint in my body is burning, my eyes are scratchy sore and the fatigue is driving me to my bed. This is one of the reasons it's an isolating disease; people can't see the pain, therefore they are in doubt that you have it.

Nadine, I have a self-imposed rule on the rare occasions I go out with friends and that is not to talk about my condition unless they ask and then keep it brief. You know what your body is throwing at you and sometimes it's easier to be by yourself rather than feel the need to justify your illness. Easier but lonely.

All I can say is be kind to yourself and take pleasure from the little things in life that you enjoy. Keep posting because sharing is so important to keeping a healthy mind.

X

[SILENTl in reply to kyliesinead]

hi kylie one of problems is aswell people dont think im sick because of how i look i feel like people are judging and watching me like why have i got disability badge why i got disability car why i walk with crutch stick why i dont go out or work why i got no kids I'm fed up explaining things to people just want to be normal when i do go out everyone talking about all the things i can't do or i cant have and i can't help but feel so worthless feel like such a waste of life can't even to the small hobbies i enjoyed with crafting trying to do driving lessons with anxiety is so hard might have too quit family in my dad side and some on my mom side have mocked my disability and my vile waste man dad who isnt in my life too busy scamming people has tried to get life insurance for me after i tryed to rebuild things with us both i never seen what he was trying to do at first but but my mom made me see i probably did see it but was just so happy he was taking an interest but as soon as we left hospital appt one time and the only time he been the next day he said someone going to phone me about life insurance i just don't understand what have i done for my life to be so bad i might never be able to have children my blood pressure too high im anemic list goes on i dont think i take much more if watching people have what i cant dont even watch tv because it upsets me all i watch is youtube crime shows and lay in bed no point going anywhere ill just end up in bed with even more pain for some time and as for my partner he steals from me ge uses me and treats me so bad but yet i feel so helpless might not find anyone if i was single i have tryes dating before it just can't be done u have nothing going on in tour life except sickness how attractive is that yes maybe i am pathetic for not wanting to be alone never uses to be weak minded until i got sick i try to be strong but there is allways something horrible going on was asked which im suprised about becuase no one ever asks me to attend a old hifhschool friends birthday drink up not aure to fo i dont know wny of her friends amd my anxiety is not good amd what if they ask me what i do feo. that moment im less appelinf yes im feeling sorry for aley becuse over 10 yeara i have just not said anything and i kmow there is other people having much worse problems but this is my solo battle and its still important like eveyones elses doesmt matter whos got less conditions and problems we all should matter i dont know 😑

[Ladyuponthelake]

Okay Silent, here I am.... I can be a really good friend if you need one! And yes I can understand completely and utterly. I need a friend. I have symptoms since childhood of many issues but never diagnosed with anything and just going through the process now. So worthless without a cause. PM me if you want any time!

💙

[SILENTl in reply to Ladyuponthelake]

thank you that must be frustrating for you not getting a diagnosis hopefully they can help you more but with doctors now a days well my experience is that you have to keep pressing them on it you know your own body and that there is something not just right hope u get some answers and thanks for ur kind words 😊

[Ladyuponthelake in reply to SILENTl]

I'm sure it'll start to get better now.

[Annethlowen]

I feel for all you dear people on this site, I only have the skin rash so I feel a bit of a fraud being on here. I didn't realize what you all suffer in so many ways. I'm glad you have a good Mum they are so precious better than any friend but perhaps you could go to a church where they will be able to support you.

[SILENTl in reply to Annethlowen]

hi my mom and family are Christians and i was as a child then lost my way have prayed and asked him to heal me or let the pain be less but seems like every time i leave a hospital appt i got another condition or got to have operation or some form or treatment battling with my faith at the moment allot but i do think i dont believe because im to scared to take my ownlife because if there was a god i would go to hell but still not sure i know god never caused sin but when the smallest good thing happened to me i got people saying thats god who done that i just feel if god really wanted to help me it wouldn't be on the things i can cope with more and why help with the return of more bad i dont know just how im feeling at the moment maybe i will get my faith and trust in him soon

[Paul_Howard Partner LUPUS UK]

Hi SILENTl ,

Welcome to the LUPUS UK community forum. I am glad that you've found us and I hope this site will be a helpful resource for support and information for you.

I'm sorry to hear that your friends have drifted away from your following your diagnosis of lupus. You may be able to make some friends with lupus through our support networks who will understand life with the condition.

You can find your nearest lupus support group on our website at lupusuk.org.uk/regional-gro...

We also have a network of trained volunteer telephone contacts. If you would like to chat with one of our contacts, please let me know and I can provide you with more information.

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[SILENTl in reply to Paul_Howard]

thank you will definitely find out more thanks for your advise

[nanleighh]

Have you tried looking for a support group? The problem with these silent diseases is people can’t see that you’re suffering, so they think a lot of it is just put on. It would be beneficial to find others in the same situation.

[SILENTl]

was given some web sites and contact numbers given on this site so gonna see where i can find support groups so hopefully will have some where close to where i live i can go get more help ☺

[kyliesinead]

Keep going! Even people who are well have limitations. I have a mantra; everything is temporary. I have felt like you, that I may as well not be here, but then the flare can pass and your mood can change.

X

[Lupus1980]

Hey Nadine! Ive had Lupus for 43 years now, gone thru 2 kidney transplants because of it, had 2 amazing sons! Im currently taking care of MY mom (shes 92) and thats where all my time goes! If you ever need to chat..lets!

[MEDIT3]

I have SLE to and have had for a long time and do know how feel alone and very down . ......I felt very alone in the beginning, but you don’t have to be with a site like this , you now have people to talk to ! I’m here for and will try and listen to how yr are feeling . The physical side is hard enough enough but no one I’ve found ever thinks about the emotional side and I was told to join Lupus UK and get on it it .It was a long hard slog but I got there ,and yes I still have to rest lots and do feel exhausted and cry but I also can become positive again . I even put slogans on my fridge like “ I flatly refuse to let life get me down” I walk past this everyday and it really does help . Anyway I’m here if you want to chat to each other? Take care !!