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LUPUS UK
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Feel free to ignore me

I’m sorry for this. I know theres a lot of people far worse off than i am, but i just can’t stop myself. Im tired, i am so so sick and so tired of pretending, pretending to accept this, pretending to be fine, pretending to be happy. Im so tired of it all. God knows i don’t want to hurt anyone, but i wake up everyday, after a horrible night, disappointed that Im here again and have to do it all over again. i dread this life. Ive already started to regret the choices i made, all of them. Isn’t that the way some people feel towards the end? It already feels like the end. Im only 38, with two small kids and i dread every day. Im sorry for this. I have no one to turn to.

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Oh Lili can you feel great big hugs? This thing we 're stuck with isn't a choice, it isn't of our making, no matter how much others would rather ignore IT, it's part of life so we do what we do with the slice of cake we've been served up with...take your two little ones, hold them tight and feel the love xxx

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I feel so sad you are at rock bottom you should not have to pretend about anything. I hope you get the help you urgently need. You won’t be able to cope with anything being so ill. Someone out there has to help you. It just sounds awful having two little children too care for as well. Hoping you get sorted out very soon.

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I hear you my lovely. I often think 38!!!! Is this the rest of how life is meant to be, if it is I so want out of it!!!!

I’ve made an appointment with my gp for Monday morning, I need to get it off my chest just how bad I feel.

Could you try doing the same? Also do you find hitting this point gives the energy to fight on once your out of it!!!!

I hope you feel this and if not you really need to talk to someone, anyone. It’s better off out then in .

If I can help I will be happy to give you my number, please inbox me. Don’t feel so alone with these feelings when myself and others are here for you.

I find the worse thing to hear is tomorrow will be better, when you actually don’t want tomorrow to come.

Please try this if you can it really helps me to block out the negative defeated thoughts, I use an app called calms. You can listen to stories, sounds, meditation and it really helps distract the mind.

Xxx

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Hello Lili, so sorry to hear you’re feeling like this 🙁 So very hard coping with these diseases and 2 little children. It is SO hard when your disease is active and the fatigue and change in life can feel overwhelming but when you get the right help and treatment so many people then have much better lives again.

There is absolutely no shame in saying how this is making you feel to your drs, in fact it is a sign of strength to ask for help when times get tough. Many of us have felt desperate but pulled through with any help we can get - from people here understanding, family, friends and finding a Dr who cares and will support you through this.

Do you have family nearby? A good GP or rheumy? I’d ring them and say what you’ve told us? Get someone to take the children out sometime over the weekend so you can properly rest? I hated asking for help but had a very bad few months and eventually rang a friend and said I was really struggling physically and mentally. She then organised my neighbours and local friends to cook for my children for a couple of weeks, give them lifts and just a gentle reminder that we may look tough and put on a brave face but everyone struggles sometimes especially with these diseases.

Let us know how you feel this weekend and hope you get some rest and help

Xx

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Dear Lili,

I too am so so sorry to read you're in such a dark space right now. I'm so glad others have written with such lovely support and advice. And I hope you can feel the care reaching your way from people who do understand.

Big hugs from me. P x

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Hello Lili18

Please don't go beating yourself up because you feel so awful. Life SUCKS sometimes and it's entirely normal to feel completely defeated when you're feeling ill and exhausted with everything you have to cope with. I can't improve on what others have said, but some 'first aid' things I have found helpful in my worst times:

- put on a song and singing along to it at high volume (but don't make my mistake and only put on miserable songs :P )

- have a power shower and run it ridiculously cold at the end

- stroke the cat/dog/stick insect. When I didnt have one, I talked to a spider in the window and made a little spider house based on our coversation

- I found the calm breathing type mindfulness meditations on Youtube good (er...that would be on my laptop of course!)

- raindrop down the window races

- ringing up the Samaritans for a chat 116-123 They're open 24/7

- if I could, I'd go for a walk (preferably in a strong wind) to the corner shop and have a completely random conversation with whoever was behind the counter

- staring at the stars (if there were any) and thinking about the magnificence and size of the universe

- listening to 'Just William' stories on Youtube (my 8 year old daughter used to love them too)

None of this solved my situation, but sometimes it took enough of the edge off to make it bearable for a bit.

Things will get better x

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...also a little walk in the rain is good - odd, in Scotland, but there has been none this year ...the most wonder smell of petrichor xxx

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I’m sending a hug and emphasising what whisperit said about the Samaritans. I sometimes call them just because I’m in pain and really fed up with all this disorder brings with it. They listen to everything, and by the end of it, life seems a bit more bearable x

If you haven’t seen your GP yet about how you feel emotionally, please do.

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Dear Lili18 I was diagnosed aged 38 so that number struck a chord with me. Lili I am so sorry that you feel so poorly and low, and it was very brave of you to reach out so candidly, be proud that you have done so. It is truly horrible knowing that you go to bed in pain and lowness, and wake up feeling the same or even worse, and have to drag yourself up and about to do what 'well' people take forgranted. It's tough.

Well I am here to tell you, I was where you are, and have had good and bad periods not going to lie, currently going through hell at the moment, and it is hard not to allow the mind to drag you to the depths of despair, so for me, I seek out my tools to get me by, and most of them if not all, Whisperit has listed. I also when I see my GP tell him candidly how I am, and he has been a total star in getting me help, first with MIND, my local branch were brilliant, and I have continued to see my Counsellor privately now for 2 years, it helps so much, so if you are open to some Counselling, seek it out, make it happen, just having an impartial person with tools to help, can make all the difference.

I am now 57 and have a well ingrained regime to help me when things are tough, if I get a few mins or hours where I feel good, I do something for me, either a massage, haircut, whatever makes you feel good.

I know you have young ones to take care of which makes life even tougher, do you have a supportive partner, or family nearby that you can approach honestly about how you are feeling, can any family members help take off some load for you until you can get yourself mentally and hopefully physically stronger, it may not seem like it, but you will get good periods, with the right input from your doctors, but you will have to push and seek it out.

Please don't suffer on your own, if you would like a chat anytime, PM your phone number and I will be happy to chat to you for however long you need, I am a good listener.

((((((HUGS)))))))))

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Hi Lili,

So sad to read this, but you're not alone. I suffer from Lupus for about 2 years now (I'm 32), but pretty much my whole life without knowing. We talk about the physical symptoms and pain a lot, but sometimes lack the openness of the emotional/mental impact. Lupus has made me feel completely hopeless at times. I've wondered what's the point if I'm going to feel this way every day? I have small kids myself, 4 girls, they have been one of the main motivators to keep my head up.

One thing that isn't necessarily easy to do, but I think super important...you have to stop pretending. I know easier said than done. It's hard because people don't physically SEE the pain. It was really hard for me to accept everything Lupus comes with. I used to hide because of the lack of understanding from others. I get that it could be hard to believe because of the nature of lupus, one day you could be fine and the next stuck in bed. What they also don't realize is that emotionally it's draining too. Sometimes for me it's a battle because my mind WANTS to do certain things, but my body is just unable. And then there are other times when it's the opposite. I get so fatigued and depressed that I can barely function, to the point where I don't want to be here.

I've had to ask myself why am I pretending/hiding anyways? Is it because I'm afraid I won't be taken seriously? because I'm frustrated with myself that it's (for the most part) out of my control? I think you should try to get to reason why you feel like you need to hide. Once I started to accept that THIS disease is out of my control, it's nothing that I chose...no one would choose it...I feel a little better. It's not what makes you who you are, but at the same time it does make you unique. It's okay to not be okay. I'm not sure how long you've been in this particular flare up, but you WILL come out of it. It always gets better. I was trying to think about what I would have wanted to hear when I was at my end. I came out of a flare that nearly killed me in the hospital a few months ago. It's has taught me how blessed I am to be alive and my awareness to the blessings in my life. I used to take many small things for granted.

Learning to accept my 'flaws' and focus on the good that we each have to offer is the greatest gift.

YOU have a purpose and one day you'll be writing/talking to someone that was in the shoes you are now and you'll bring them hope. Even though Lupus affects people differently, we need each other to get through it. Those two kids see a beautiful strong mother that gets up every day through suffering. I don't know how old they are, but trust me if they can't understand now, they will one day.

My faith means everything to me and learning to lean on it has become my lifeline. Have you checked your vitamin levels at all? I have a hard time absorbing vitamin D and it has caused a lot problems. Also, be gentle with yourself. Being a mom isnt easy to begin with and adding an unpredictable illness makes it 10x harder. You need time for YOU.

I'm sorry for writing a ton, but I can just relate to how you feel. I have been there SO many times...just the other day really. But I AM okay and keep looking for even just the small things. This is the first time I've used this site, but you can send me a message any time or if you just want someone to talk to. I'm here x

- Shannon

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This is a lovely reply , thank you for contributing to this post. I pray that lil logs on soon and reads all of these replies x

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Oh dear lily. I feel for you I really do as I know too well what you're going through. We all do, we've all been there. I think the others have said it all really so I just want to send you a big hug and tell you it will be ok. You'll get through this and we are all here for you. Xx

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Oh Lili18. Please don't be sorry for posting to let us all know how you feel. I think it's a very brave thing to do. 'Worst-past-the-post' has no meaning here - we're all in this together so please don't think that your 'story' (ha - if only it were) is any less deserving than any of the others.

There is not one person in this forum who won't understand what you’re going through - most of us have been there...and will go there again, so I'm hoping that knowing this will at the very least, help you to feel less alone and isolated.

Lupus is a great pretender and we become that to. Often, we don't want to open up to family or friends for fear of worrying them...but also because we learn that very few people can really understand the devastating impact of having an autoimmune disease. So we hide and pretend, smile (if we have the energy) and struggle on when most 'normal' humans (ha, again) would collapse and hide under a quilt for evermore. So not wanting to get up, hating every day, wanting an end...perfectly understandable and horrifically common to many of us. So, no need to be sorry...because yes, I'm shouting, me too (sometimes).

I see that you've not long been diagnosed. Nine months is a short time in the AI world and it can often take quite a while to get on the right treatment plan...and drugs don't work immediately, so the process of improving often takes longer than any of us would like. And some have to try several different medications until they find one (or a combination of several) that work for them. So please be brave and next time you see you rheumatologist, tell them exactly how you’re feeling (taking a list of symptoms that are troublesome and points I want to make works for me - or else I forget and sit like a vacant but very squeezed lemon - and leave with... not a lot 🤷‍♀️🤦‍♀️). It may be that your rheumatologist can 'tweak' your medications and work towards a treatment plan that would be better for you.

Has to be said that there are 'good' and 'not so good' rheumatologists and some here really struggle to get one who will offer appropriate (or even adequate) care. If you are unlucky enough to have one of the 'not so good’ sort, please do try to find a better variety. It's your right to ask for a transfer of care - I'm on new rheumatologist number three and if this doesn’t work, I have number four lined up. Hopefully, you do have a decent rheumatologist but if not, post here and folks can message suggestions. LupusUk also have a list of recommended rheumatologists, so they could help if you give them a call. Incidentally, they also have a list of volunteers (all who have Lupus) who are available to speak on the phone...so if you need to hear a friendly and supportive voice...😉.

Thinking about sleep...I suffer most when I get little sleep, so just wondering...if you could tell your GP what you have shared here, they could perhaps offer medications to help you sleep (even short term or intermittent can be a big help).

Also wondering if you've been referred to a pain clinic - their full-time focus is pain management and they often have little bags of tricks that can make a big difference. Worth asking if this has not been offered.

Tomorrow’s - yes, I hate them to. I don't do tomorrow anymore, simply because I now know improvements often happen over-time. If I thought of tomorrow, I'd likely go mad - so now I aim for next week, next month...and sure enough, by looking back at how I was a month ago, it's possible to spot that 'x' thing is not quite so bad...but hey, 'z' is worse, so let's try and fix that now. Silly perhaps, but it makes me feel more in control of something that we have little control over, if you get what I mean.

I love whisperit's suggestions...all things I do myself too. But it was hard to get to that place of finding some small thing to enjoy. I started by making a pact with myself that twice a day (even if for only five minutes) I would look at one thing and really see it...and enjoy it. Never had time to really look at things before and it's had quite a remarkable effect on me (and perhaps on the things I look at too).

AI is also very up and down. I’ve recently had to stop immunosuppressants and am waiting to start another treatment plan. Some of the symptoms I had previously are returning...and it's only because they’re returning that I remember I had them in the first place. So feeling worse right now is a peculiar reminder that I have been better...and if I've been in that better place before I can get there again. And this will happen to you to (though I bet you can't imagine how, right now).

You may not know this, but I bet that your post has helped many people - those who feel like you but don't post to say so will know that they are not alone...and will read the replies left for you, take comfort, and feel less isolated. Reading the replies myself I am reminded how many 'stranger friends' we have here...people out there (somewhere) who truly understand and pop in to help in whatever way they can.

So, you see...you don't have to be alone...you do have people to turn to...us, here...your stranger friends.

So, Lili18...please know that all who read your post will be thinking of you...so you just keep posting and talking...let us know how you’re doing...be kind to yourself...and take heart, because things can change when you least expect it.

Love and hugs to you ❤️❤️ xx

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I am weeping Foggyme, how well you have put it....despite my 'mild' lupus (which fully f*cked over my life, apologies for the French) now in full remission, I have been to very dark places and it's only due to this forum........................thank you Lili for bringing up this topic, we need to talk about it xxx

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In a strange way I’m glad you said this reply made me weep, it had the same affect on me. It’s heartbreaking to hear others suffering, and so emotionally overwhelming how the users on here reach out in such a caring way.

It’s a beautiful cyber place here 😊. And strangely enough for many of us, we ended up here because no one would help or listen to us . Everything happens for a reason .

I do hope lil is ok x

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Well, Lil give us a wave, YOU ARE NOT ALONE xxx

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Yes Lisalou...we hear some shocking tales here but I am constantly humbled and amazed by the way folks constantly find the energy and the words to help and support each other.

We stand in testimony, each for the other...and yay to that.

A beautiful cyber space indeed ❤️❤️

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Mild...ha...hated description. Would quickly be abandoned if they had even one itsy bitsy teeny weeny AI condition!

Sorry for the invoked weeping...❤️❤️

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So nicely put. Fits exactly the bill for Primary APS and treatment “trials” as well.

I’d like to add, that sometimes it’s easy to see treatment, “ failure “ as just that- a failure. That’s because in the strict sense it is.

But it is also personal data that is Bespoke to you. Remember each of is is unique in how we respond. It may more quickly narrow in on the single agent or combination of agents that may provide best therapy for you.

It does take a while to tweak. ( or change gears completely.) I’m in the throes of it myself.

Courage together! All of us...

Hugs and friendly greetings from the lone star state-

Kelly ( in Texas.) 🌵❤️

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Thank you Kelly in Texas...hugs from the UK ❤️

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🥰Thank you. Part of my medical team is in the London. I’m seen at the London Lupus centre, and Hematologist and vascular surgery at UCLH. I’m back and forth to a limited extent.

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Such a lovely response Foggyme. They all are... thank goodness for this site x

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I find you can only pretend for so long then it bites you in the Arse

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Yup and when it does those closet to me think I’m having a depressed manic moment 🙄

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It’s not manic it’s called constant pain the difference is we have no choice but to keep calm and carry on

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“ brain rebooting.” That’s what I call it!

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Beautifully put Ian, thanks for being with us xxx

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Lili I too send you hugs. I have been ill since just before my 25th birthday and just had my 55th [shh don't tell anyone] I started off with just ulcerative colitis and progressed to lupus, fibro, osteoarthritis, and other unexplained symptoms. I feel I have missed out on life never being able to hold down a job because of colitis flares which lasted for months at a time. No family of my own. My only friends are the great people I chat too on here because it is only with them I can be honest and open about how I feel without being judged. Other people, even family just don't understand things like fatigue. I too feel like I have to hide my health problems even from doctors which is stupid. they ask how I am and I automatically say fine.

Some of the things whisperit suggest are great, I found going for a walk and every time I stopped to rest I took a picture, may be you could do something like this with your children. then go home and look at your pictures together. XX

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❤️

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holding you tight XOX

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Hey Lili, if you let us know what town you’re near, one of us who’s in a more remission phase might be able to come over, chat and/or play with the children for a bit to give you a break this weekend? I’d love to do it if you’re fairly near me - it would help me too as I love little ones and it would give me a break from annoying teenagers and trying to encourage (unsuccessfully) some GCSE revision 😬!

Or message one of us and we can chat on the phone. We are all here for you xx

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Yes, I'm a bit deaf Lili but can be at the end of phone ! xxx

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Lili18 Don’t apologise, you are having an awful time, you’re in constant pain and can’t see the light at the end of the tunnel! You have every right to complain, you have every right to feel sorry for yourself and to feel angry at the world!

But there is light at the end of the tunnel, keep looking for it. Cuddle your little ones. Get back to your GP or Rheumy and demand they do something to help you. Don’t let this sh*t illness win!!

I’m sending you the biggest, most gentle hug I can, stick in there and ride the storm until it settles. xxx

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Sorry to butt in but another newbie here. Just had to write and say how much this post resonated with me, and more importantly how, beyond words amazing, inspiring, full of love, all your replies have been. I loiter in the background of this forum. I have lupus and live near Leeds. I often feel so alone. Yesterday I cracked. Instead of the gritted smile and the almost out of body mentality needed to continue 'normal life' through the pain and exhaustion - working, looking after two kids, single parenting Mon- Fri as dh works away. The floodgates opened. I heard myself sobbing "I'm scared. I'm in so much pain" to a shocked husband. You guys make me and my whacky symptoms feel normal and not alone. I truly hope you've done that for the original poster too. Sending lupey love to you very special people xxx

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Never feel like your butting in. We all need each other and your input is greatly appreciated by all. Hoping today is a better day for you 😘xx

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Thank you. You too. I hope Monday's appointment goes well x

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I always butt in 😂❤️🤦🏼‍♀️

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You never do, and your contributions are so valid to us all. Xx

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Right back at you 😘 hang in there! X

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This post resonated so much with me too Apricot100. I had a diagnosis about 9 months ago and am in the throes of trying to find a way forward. Like you, my husband works away and I have five children! I think the shock that this is something we all just have to live with is the worst thing for me. I am so used to facing problems head on, tackling them and onto the next thing. The brain fog and fatigue make it even harder to plan a way forward.

I am currently at home recovering after a bout of pneumonia (I was in hospital most of last week) and finally joining this forum has made me realise what an unbelievably supportive and kind community this is. I don’t feel so alone.

I am near Leeds too. Message me if you’d like.

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Hi Lili18. I am truly sorry to hear how your feeling and how unwell you are. I relate and understand as I too have struggled and feel how you do. Try looking at how things can change and also accept there will be times when you have no control on what happenes it’s how you react that’s the most important. You have hit rock bottom like most of us on this site have.i had to try mind over matter and all sorts of things. Some helped and some did not. 😂. Start by asking every friend and family member that you trust to step in and help you as you can’t do it alone. Keep a diary of your thoughts and feelings, the symptoms you have and most importantly what you have eaten. I am incredibly depressed if I have no time to eat or eat badly I feel so much worse. There are groups like the well women’s centre that offer free courses maybe company may help as it’s so difficult to make friends and have a life when you have a family to care for. Make a list of one thing every morning you want to change and two things that make you happy. Get yourself some fresh air to help you think. Some of these things may help you as they did for me or they may not. You need a break as the demands of being a parent plus being unwell is hard. Could a friend babysit for a few hours whilst you get some time for yourself. I had to ask my friends and family to step in when I had a breakdown and they helped me. You don’t say how old your children are but if they are under five there are groups that may help. You deserve better and to get well it takes time effort and support. Chin up lass there’s better times ahead for you I just know it. I was a single parent for 12 years then I met someone and we are now engaged. My son is now 18 and it’s a miracle I came through it in one piece. I don’t know how you feel about medication but maybe a supportive dr could help you. Let me know which areas you live in and I can do some research to find out what’s available in your area. I wish you well and hope your feeling much better soon. Am so sorry that your suffering in this way but you have so much to live for and things can get better with help. If I had a magic wand I would surely give it to you. Keep us updated and put on another post if you need advice as this site is full of lovely people who go through so much and we can offer support and advice or just listen. Remember you are not alone. Take care and have a great day. Elena.

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Lili don’t apologise to anyone for how you’re feeling. Us lupies all feel like this sometime. I know exactly how u feel but I don’t have 2 young children to look after as well. Go and see your doctor Lili tell him what you have just told us and get the medication u need to make u feel human again. I’m guessing your not eating or sleeping and hate the thought of having to speak to anyone even the ones u love? You’re not alone Lili but u need to see your GP. Sending you love and hugs Lili xx

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You are not alone dear Lili18. Anyone with chronic health can honestly say they must have felt like this at one time or another in their lives. I know I have. This feeling will pass my dear and everything will look brighter 🌻💜 if you ever need anyone to chat with just DM me. You’ll be in my prayers and I’m sending you all of my positive vibes and big warm hugs. Feel better soon lovely 💗🌟

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I am not able to say anything all the others haven't already said with experience and empathy. I will keep you in my prayers and please seek help from doctor, family, and friends. Always feel free to express yourself here; we all do it when times are hard. 🙏

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Hi Lili. Your post has really hit a chord with me. I know how hard it is to pretend to be 'normal' when all you want to do is rest away from everyone. And it's sooo hard when you have children. Do you have a supportive partner, friend,GP, rheumy - some-one you trust? If so, please talk to them - let them in and let them take some of the stress and pain away.

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I've nothing to add except that I agree with all of the above Lili...u are not alone!! U have some good advice n tips to get through this..n u will get through this!! Much love n healing vibes from me to 🤗🤗🤗💐 xx

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God has got you! Anyone with a chronic illness, like what we have has those days when we fill that way. It's okay! People have lived with it for years. Its finding what works for you and your health. Seek medical and professional help immediately. Hug your children and dont ever forget that they need and love you. Depression is part of this journey, seek professional and spiritual help! God has got you. He loves you...🙏🏾🤗🤗🤗

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Hi Lili, so sorry you are feeling so low. It may help a little to realise that how you are feeling now is another crappy manifestation of this Lupy weirdness. During my last big flare I felt so low I couldn't even be bothered to try and explain how ill I felt. I just wanted to crawl into a hole and be left alone to die in peace. It is only now I am coming through and the brain fog is subsiding (yes it does!) that I can clearly see that how I felt then was part of the flare. Much better now, and I am sure that you will soon come through it too, just hang in there, take the love and excellent advice given here and start by telling someone you trust to help you. Love and hugs xx

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Hi everyone

Im sorry i could not respond earlier. As you can tell, im in a very dark place right now and it is scary. I am literally afraid of myself.

I cannot thank you enough and my English is not that good for me to be able to tell you what all of this support means to me. All you genuinely lovely people, thank you so much for all your kind words of encouragement. Sadly, I’m not alone in this.

Im sorry i exploded like that and made you worry. I honestly do not know what happened or how. I have to go now. Thank you seems just empty words for what you have done for me, but thank you

All my love

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XOXOXOX no need for sorry Lili18 XOXOXOX

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Oh eekt, I feel sorry for everything. How are you these days?

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No Lili18, you reached out and it was the right thing to do...and quite a response!

I'm in full remission, medication-free, just Vitamin D - miracles can happen!!! :)

Keep posting, keep sharing (only when you feel up to it!) XOX

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O wow, that’s wonderful. I’m so happy for you

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THANK YOU!!! xxx

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Nothing empty about words Lili18...they’re all we have in this space...it will be enough for all here to simply know that you’re still out there and fighting. Exploding is good. It relieves the pressure and helps to find that something extra...and then some...that we often need just to get through the very next minute. So explode away anytime...we all do that...and never any need to apologise because we all get it (as it gets us, too).

Yes, a dark and scary place...Lupus is that and it take us all there too. Please don't be afraid of yourself...keep reaching out and keep talking here (or anywhere)...whenever you feel the need. Please don't feel any pressure to reply...just let us send helping words. We all know how much energy it takes to respond when there are lots of replies, however much we may like too, so just a thumbs up 👍 to let us know you’re okay would be perfect (we're such sorry warts sometimes).

With much love and many hugs back at you Lili18 ❤️

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Hi Lili. Bless you I understand your despair. It is relentless, soul destroying and it does get you down. No one should ignore you when you feel this bad. Have you gone to your GP? I have had to go onto antidepressants just to keep my head above water and had six counselling sessions but I have also found that acupuncture helps with my pain. I did try Mindfulness but it wasn’t for me, a stress course just stressed me out too. The best thing I ever did was to attend an Educating patients Programme where I met people just like me. It was emotional but opened my eyes to just how hard I was trying to be the old me when sadly she is long gone. Find something that works for you and ask for help. You are not alone. Huge hugs

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Hi Lili. Thanks for finding the strength and energy to get back to us. As Foggy said earlier, just a thumbs-up will let us know you're doing OK(ish). I may be well out of order here, but I get the feeling you're trying to tell us about 'some-one else' involved in your pain. We will listen, but only when you're ready to share. Please feel free to ignore me if I'm waaaayyyy wrong!!!

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I’m so sorry Lili. You shouldn’t compare yourself to others - if this is how you feel it doesn’t matter whether your SLE is more or less aggressive than anyone else’s - it’s irrelevant. All I can tell you is that when I was your age and stage I felt the same way without even knowing I did or knowing that I had autoimmunity. Lisalou and others are right - you need help ASAP and I really hope you can get it. Meanwhile please hang in there because you won’t regret it. It’s a very hard stage you’re at but it honestly does get better. 🤗

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Love and hugs to you Lili. We are all have times when we feel like giving up. Have you talked to your doctor about how are feeling? It sounds like you are depressed which is a part of this illness. I have had severe anxiety myself. There are medications that can make you feel better. Don’t give up, you have your wonderful children. Try to find a support group in your area. And you always have us here. We all care for you and what happens to you. XO, Nan

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Sending a big hug, I'm new too and not diagnosed with anything yet but that doesn't matter here, the members show such kindness to everyone. I am so sorry how you are feeling, others have sent ideas but what helps me is "Insight timer" meditation app (free), crosswords/suduko, etc and please try to be kind to yourself but equally I completely understand how impossible that may seem today - try though xox

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Hello Lili;

I know how you feel, it can get depressing with Lupus or any disease. I not only have Lupus, but I am also scheduled for surgery for cancer on May 6th, yes, only a week and a day away.

I have my motto with Lupus, I want you to use this also, for what ever health issues you may have.

“Lupus has changed my life, but, I will not let Lupus control my life”!

I know it is hard but you must fight through this, and not give up!😊♥️

You will be in our prayers and thoughts!

I know you can get through these tough times! You said you had no one, you have this family (this group) to help you, and talk to. You may PM me anytime! I am one of the lucky ones, my wife has been beside me helping, and supporting me every step of the way with Lupus and now cancer!

Wishing you the very BEST!♥️

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I understand but you have 2 REASONS to keep moving forward your Kids.

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Hi Lili18

Sorry it’s a bit late but I was where you are now only a couple of months ago. I thought I would share how I have dealt with the negative thoughts and feelings and I hope you find your way.

I had to contact the crisis team at 6am as I did have suicidal thoughts and I was scared. They posted me to my GP who in turn increased my anti depressants and posted me to my Rheumatologist. They didn’t help either and my Counseller said he only got paid to see me once a week. I was seriously rock bottom and started having panic attacks. I had no choice but to open up to my family and partner! For the first time I felt as though they listened and I mean actually listened. I think the state I was in scared them as well.

After a few days of talking, crying, hugging I got in touch with a local lady who does EFT and hypnosis, yes it isn’t cheap but I needed help! This process has worked wonders for me and in turn I am managing my pain and fatigue.

I am not sure where you live but try search locally for someone who practices in this.

I hope this helps and reassures you that there is light at the end of the tunnel!

Keep fighting and take care

Linds

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