Hi to everyone.

[AddyT]

I feel lonely, sad ,weak and useless.I feel like to give up

[PMRpro]

You are part of this community - even though this seems to be the first time you have called out to us, Sadness is very usual when you have a chronic illness but that doesn't mean you are weak or useless and I'd definitely say you aren't weak because it takes enormous strength to admit to others when you feel down. And useless? Connecting here as you have done may give someone else the strength to admit their problems.

So please don't give up - there is support out there to help you weather this storm, so look for it and seize the opportunity. Big virtual hugs

[Tiggywoos in reply to PMRpro]

So well put 😘

[AddyT in reply to PMRpro]

Tank you for you response, it’s horrible to feel how I feel I can not trust anyone anymore . Lupus change my.

[LadyJade in reply to AddyT]

Hi AddyT. I also feel like that at times. I’ve been diagnosed with Sjogrens, fibromyalgia, Reynauds and now Chillblain Lupus! I’m also Type II Diabetic. It’s important to talk to someone, I’m lucky that my husband understands me on my bad days. I’m on 2 Tramadol morning and evening, and more if needed and 4 Amitryptiline of an evening for pain. I’ve found that Tramadol helps me sleep and Amitryptiline helps any anxiety and depression, although it is a painkiller as well. If I forget to take my Tramadol I struggle with my sleep patterns, but if I forget my Amitryptiline I’m in more pain and really depressed. I don’t know if any of what I said can help, but all of us on here understand what you’re going through, so talk to us. xx

[Tiggywoos]

Addy I am so sorry you feel this way . It was very brave to reach out to this forum but I feel you would get more help if you could talk to someone .

Could you ring the Samaritans if you are in the UK ?

Number is 116 123

You are not alone although it may feel like it xx

[AddyT]

Tank you for you response, it’s horrible to feel how I feel I can not trust anyone anymore . Lupus change my.

[Tiggywoos in reply to AddyT]

You can trust us as we can all relate to how you feel . You are still the same person you were before xx

[Flows]

Hi Addy i am so sorry you are feeling this way. A chronic illness like lupus is hard. Its hard to deal with the way it dictates yr everyday. Anyone with lupus will understand and im sure we have all experienced those feelings. The only thing i can say from my experience is you will learn to cope and have days u will feel better and accept it and find your own way of dealing with it. Speak with yr dr about yr feelings they may be able to help. Take care

[Eddie66]

Totally understand your feelings. It's important to talk to your GP.

I have Lupus and right now am confused and "pissed off" with my symptoms.

There are things you can do and not feel useless.

It's tough but please don't give up, try adjust your measure of success.

Take pleasure in every achievement however small it might seem.

Happy to keep up the chat.

[Lily25]

I'm so sorry you are feeling like this. But you are not alone, we have all felt like this at some point in our lives and its nothing to be ashamed of. It's not easy living with one or more chronic illness(ess).Please get help either from your GP or other health professionals.

[JCZW in reply to Lily25]

Hi AddyT

I'm so sorry to hear how you are feeling.

I felt like that 2 years ago and just wanted to end my life. It seemed that nobody understood how I was feeling especially my family.

I made the decision to see my gp it was the best thing that I did.

She put me in contact with the mental health nurse and social prescriber at the surgery. They were amazing . They kept in touch with me for at least 6 months and put me in touch with steps to wellbeing who were also amazing and kept in touch with me for a year.

I still have times when lupus gets to much but I've learnt strategies to help deal with my state of mind.

Please reach out for help.

This forum is also amazing as everyone on here knows how we feel.

I wish you all the best.

[CecilyParsley]

Hi Addy, I am so very sorry to hear that you are feeling so lonely and depressed. I think most of us here can really understand that feeling as we are all prone to these feelings when our chronic illness is not controlled. It adds to our isolation when those we love simply do not understand what we go through. I will be honest and say my friends all disappeared when I could no longer go out and do things I always had. Initially they made allowances for me but it did not last long. I have found more kindness and understanding and true friendship here than in everyday life and you will too. Be kind to yourself x

[Debbie_kinsey Administrator LUPUS UK]

Hi AddyT

I'm sorry that things are feeling difficult at the moment. It's really understandable to be feeling fed up of dealing with symptoms and having to manage your life around them. But you are not alone. I know it can be challenging to reach out when you're feeling this way, but there is support available and people who understand what you're going through. You are not alone and your mental health matters just as much as your physical health.

You can get support from the NHS, such as counselling and helplines. Sometimes you have to be referred by a GP, and sometimes you can refer yourself. You can find what services are available in your local area and how to access them here: nhs.uk/nhs-services/mental-... . You can also call 111 if it's urgent, or 999 if it's an emergency. The NHS also has 24-hour mental health helplines, and you can find your local one here: nhs.uk/service-search/menta...

You may also find the Wren Project helpful. This is an emotional support service specifically designed for people with autoimmune conditions, and you can refer yourself without having to go through a GP. You can find out more about them here: wrenproject.org/

Please also feel to give us a ring on the helpline if you ever just want to chat things through or have a vent on 01708 731251. We can also put you in touch with other people with lupus via our Groups or Contacts if you'd like.

If there's any support I can offer or information I can find for you, please feel free to get in touch with me any time at [e-mail]

Take care,

Debbie

[Carcrashgal]

AddyT, I'm really just repeating what everyone else is saying, but most of all, you're never alone with us lot. We may all have different stories, but we've got so much in common - not just these wretched diseases, but how we've been treated, what we've been through, where we've found help and hope, and friendship. Things may look grim, but there is *always* hope, especially medically, with new drugs and procedures coming from all sides. Please do reach out for help - approach your GP, talk to the wonderful Samaritans, ask for referrals for therapy, if you're not yet seeing a rheumatologist, you should be - and see if there are any lupus groups nearby (or on-line): just talking to others who've been through the same things can be such a massive relief- for me, it was proof that I was not going mad, that I was worth bothering with. Hang on in there: there is always light after the darknesss.

[Tiggywoos]

We’re all rooting for you Addy you’re surrounded by friends here . No need to reply x

[Spanielmadlady]

Hi Addy. Sorry to here this. Don't let Lupus own and define you.....you are still a special person full of character and strength. Acceptance goes along way to coping with our illness . It is all manageable with adjustments, compromises and medication. Please do seek help and support there is plenty available. there is nothing to be embarrassed or ashamed of in asking for or accepting help. Come on my lovely you've got this put Lupus in its place 🫂 xx

[Stills]

you are not alone, many us have felt as you do now and many us still have days when we feel like you do now, I know I do and I don’t even have Lupus.

When I lived alone and worked in London many years ago I used to call my home answering machine and leave messages of encouragement to help me face the evenings as I found them hard; it helped.

When the weekends were long I divided the day into segments like a time table so I also knew what I had to do next; it provided a sense of direction.

I exercised as much as possible or danced to music alone at home; it released endorphins which helped.

Keeping a journal is a healthy form of escapism , it’s like screaming out loud and when you look back you’ll see you’ve had worst days and today is not too bad.

Treat yourself to something daily, a bar of chocolate or whatever takes your fancy and aim for something weekly like a new book or CD ( showing my age) and monthly like a new shirt, treat yourself to what pleases you.

Above all talk about how you feel to those who will listen, we all will, The Samaritans are invaluable and you can call them everyday when you feel the need. Finally remember that no matter how bad you feel today tomorrow is a new day and could be a better one. 🤗

Edited typos