I'm new here....

[SamRigs]

Hello, I am new to HealthUnlocked but when I found out there was a forum available to speak with other people who have been given the diagnosis of Lupus I just had to join.

I am still feeling numb from spending just over a week in hospital after being given the news about lupus, having a renal biopsy and going from somebody who didn't really take any medication other than paracetamols to now 16 tablets a day it is so much for my mind to take in.

Since coming out of hospital I have had letters through the post every day with upcoming appointments for both renal and rheumatology. Whilst I feel like I am being looked after - I do feel overwhelmed by it all. I feel like my life has been tipped upside down and every day things I had taken for granted I now find more difficult to undertake. I am not feeling sorry for myself just don't know what the heck is going on - there is a lot of truth in the saying you never know what is around the corner and to live life to its fullest. I would love to chat with other people who have been diagnosed with this lifelong condition to talk about how they are feeling too and to try and understand more about what to expect. I guess I'm frightened what the future now holds for me.

[baba]

Welcome to the forum.

If you go to the main Lupus UK website there is lots of information and downloadable leaflets/booklets on all aspects of Lupus.

lupusuk.org.uk/

Keep a diary of symptoms, rashes, medication etc. Note if the medication seems to help. Some take a long time before you notice the improvement!

Take your appointments, one at a time, bring list of symptoms medication etc. Write down questions to ask, otherwise easy to forget.

This is a friendly forum, I'm sure you will get lots of replies.

Best wishes.

[SamRigs in reply to baba]

Thank you very much for all your great advice, it is much appreciated. x

[Spanielmadlady]

Hi.i was diagnosed with lupus and lupus nephritis in 2018 after being seriously ill for 5 years without explanation. There is life after a lupus diagnosis if you adapt and compromise.pacing yourself is a must so is staying out of the sun and protecting against all sources of uv.stick to your boundries ,learn to say no.eat and sleep well.give yourself time to adjust ,try not to over think things keep stress to an absolute minimum as it's a major contributor to lupus flares.google the spoon theory . Weve been where you are and are we are still living and laughing. Last but not least be patient....lupus is very complex and drugs take a long time to work . Keep smiling you'll get through this ......we have xxxx

[SamRigs in reply to Spanielmadlady]

I really appreciate your comments, thank you so much. x

[Spanielmadlady in reply to SamRigs]

I know most of it isnt what you want to hear.in my 7 years experience I've found it better to accept it and work with it rather then fight against it.if you fight the fatigue you will hit that brick wall and crash ,if you ignore sun protection you will have a few bad days so work with it cover up and rock the sun hat,rest up and sleep and you will have the some energy to enjoy something xP.s we call rattle together as I take 25 tablets a day x

[SamRigs in reply to Spanielmadlady]

Oh my goodness - 25 tablets a day (crikey). I am doing a lot of research and trying to work with it. I am awaiting a big hat I have ordered off the internet - that covers my neck and face and I am putting lots of factor 50 cream all over. Do you know - is lupus something that will get worse with age or will it eventually stabilise - I have read about remissions and flares - it is just something I am curious about. Do you think the doctors will ever reduce your 25 tablets a day? I really hope so for you. xx

[Spanielmadlady in reply to SamRigs]

I think we only ever go into remission sometime remission can last years there doesnt seem to be any way of knowing. Something can happen like a stressful situation or a virus and away we go again with another flare. The initial thoughts were 4 years to put me into remission I'm 21/2 years into that 4 years .I'd like to think they will i have lung issues which are thought to be as a result of the lupus so hopefully i might be able to come off the meds for my lungs one day but lupus meds are also about preserving and protecting organs for the future so that's a factor that needs to be considered too.im steroid dependent so would love to come off those but they help keep my lungs stable 🤷‍♀️ so maybe it's about a finding a fine balance rather than coming off them completely 🤔.I love my hat and my wrap around sunglasses and I dont give a hoot what people think.....it all looks better on me then it would on them anyway lol 🤭 x

[Krazykat26]

Hi SamRigs 🤗 a very warm welcome to the forum 💐You've done the best thing joining us..u will find out lots of info about autoimmune conditions including lupus..n you'll probably discover that although we have lupus were all individual cases with our own particular difficulties/challenges!!

However the info n support here is unparalleled n we have a good laugh too..you're amongst Lupie friends here..you're not alone n u will find your way..it takes time n can be damn right frustrating at times..that's why this forum is priceless..we can have a rant with people who understand what it's like living with lupus 24/7!

It is overwhelming at first n we have to take time coming to terms with the fact that life will be 'different'..there's a grieving process that we have to go through..but during that process I have to say that I've found that I'm much stronger than I realised n I take great pleasure in the smallest of things that I normally probably wouldn't have even noticed before!

So stick with us kid.. we're all in the same boat..but with different paddles 🌈😽😽xx

[SamRigs in reply to Krazykat26]

Thank you so so much for your kind words and support. I really do appreciate it and it is so lovely to know that I can chat with friends who know what I am going through. I know what you mean about the grieving process - its strange because that is exactly how I feel - I feel like I am kind of floating - like its all a dream and I am going to wake up. xx

[Jmiller623]

Welcome Sam. Nice to have you. Take each day one at a time. Lupus spares no one. I am a physician scientist diagnosed at age 34 and no longer working. Sometimes you have to do what’s best for you. It’s a hard to pill to swallow for the overachievers but one that gets easier to swallow as time goes on and you find your niche in life. I’m still settling into this mindset. Sending you many hugs and well wishes. ❤️🦋xx

[SamRigs in reply to Jmiller623]

Thank you so much for your kind message and advice. I really do appreciate it. xx