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[LupieLady45]

hello all ... I was diagnosed with Lupus in 2003. I have just found this site after I reached out for help. I have been suffering in silence and trying to cope the best I know how. Having read some of the messages I feel that I am not alone in this battle it's been hard and gets harder ... I just need someone to talk to who will listen and understand. I don't know what to do!

[Lula76]

Hi LupieLady and welcome! You'll certainly find that people listen and comment here and will certainly understand the circumstances you find yourself in. I hope you find this to be true x

[LupieLady45 in reply to Lula76]

Thank you .... I feel so isolated and no one understands the daily difficulties. Today has been a bad day I've been in bed mostly my joints ache ... I'm exhausted can't face food. I've had a migrant since yesterday.. I feel all I do is moan 😣 ... and pop pills!!

[Mandypandy1969 in reply to LupieLady45]

you are not alone. I have been in a big flare for 18 months. no 2 days are the same for me. ok ish at the moment as was given a course of steroids as steroid injection didn't work for muscle aches and fatigue. hopefully hydroxy will have kicked in by time I have finished the course of steroids. we will see if it's kicked in when the course had finished. I have only been on hydroxy for 3 weeks, into my 4th week but can take up to 3 months to kick in. fingers crossed. any questions, just ask. no problem, all in the same boat but may all have different symptoms. x

[Sara_A]

Have u got family around?? Do they just not understand about the condition?? I find it really hard too as it's a relatively unknown illness, when people ask what's wrong with u I usually um and ah and then say um lupus??! I think only one person has ever heard about it!

If it was something like RA or MS I think people would understand more as it's more well known.

I'm struggling today I'm only at home with the kids 5y and other 18 months and I am seriously exxxxxhhhausted!!! Am struggling to stay awake and counting down the 3.5 hrs til dad gets home! No life wishing time away is it!

It's good uve found this it's good to be able to unload and share with the others who know how u feel and have been thru same stuff and are so supportive and I'm sure will make u feel much better!

[LupieLady45 in reply to Sara_A]

Hello Sara_A ... I have an 17 year daughter and 14 year old son. I have separated from my husband. My daughter is understanding and helps however my son has told me that he doesn't want to deal with me and the illness. He says that I am always in a mood and tired. I don't know what to do how can you describe the constant pain and fatigue. I have actually given up trying to to get him to understand the illness. He's obviously going through a hormonal period which I get. But sometimes I feel if I had cancer would they be more sympathetic?? And not judge. I totally feel your exhaustion and will be here to get you through the days .... we all have each other x

[Sara_A in reply to LupieLady45]

That's really hard that he says that but try not to take it to heart it's just his age and he doesn't understand.

As he gets a bit older I'm sure he will try and help u he's just at that age.

It's hard for adults to understand let alone teenagers!

Are you working too? The exhaustion is just the worst x

[LupieLady45 in reply to Sara_A]

I had to give up work in 2014 i am a qualified pharmacy dispencer . Your absolutely spot on when you say others don't understand when we alone don't know how to cope or explain the daily struggles. I just leave them to it and do what I can when i can. When you tell someone that you have lupus they always say well you look well !! try looking inside me ...well is not what you will find! x

[Chanpreet_Walia LUPUS UK]

Hi LupieLady45,

Welcome to the LUPUS UK HealthUnlocked Community!

I am pleased to hear that you are finding this forum useful; we have lovely community members who are always willing to help.

Having someone to speak to can help improve your overall wellbeing as well as help you cope with certain situations which can be tough. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail] .

We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....

Please let us know how you get on, wishing you all the best.

[lucinda1]

Hi Lupie Lady, you are not a lone, now that uve found the website. It’s hard but hang in there, it gets worse before you feel better again, that’s the nature of Lupus. Have a daily routine, diet is important and exercise, less sugary foods more greens, drink more wateretc. I find meditation wearing headphones helps. Hang in there you’re not alone, 🙂

[LupieLady45]

Thanks for the advice lucinda1. I have started swimming and it is helping me build my inner strength. However it is tiring !! .. so when I get back I do need a cheeky sleep. I have learnt to take one day at a time. The hardest part is adjusting my entire life around lupus but it's much easy when there is a good strong support network around to help. I thought I was alone with this illness and sometimes even queried the symptoms I felt ... was it all in my head? ... It's a relief to know that what I suffer is real and there are others who can relate. I am going to give the meditation wearing my headphones a go! Thanks for the tip! ☺