This is just a post for anyone who has been newly diagnosed. I was diagnosed in 2021 and can on here looking for help and support as I was in a dark place. A lot of people on here helped me and a lot of people didn’t. The people who didn’t scared me even more of my condition saying your life won’t be the same anymore, you can’t go out in the sun, don’t drink alcohol, say goodbye to your social life, you can’t have kids, no one will ever except you because you have lupus!!!
Well newbies don’t let anyone scare you for the past 3 years I’ve been in remission, since I’ve met some one got married and had a baby, I am living my normal life again. Yes I’m still on meds and yes I still go for check ups but there is light at the end of the tunnel.
I was at my darkest 3 years ago but pulled myself out and when people started saying the above to me I deleted this account because I was devastated that my life was ruined BUT it’s not!
You got this newbees
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lupie2021
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Welcome back to LUPUS UK's HealthUnlocked Community. I'm really delighted to hear that you've been in remission and started a family in the past three years - congratulations 🎉
I'm pleased to hear that you a lot of people in this community helped you when you initially joined in 2021. I am concerned by the negative comments you say you received. Knowing this community, I expect comments came from a good place with the intent to be helpful. We take moderation of this community very seriously and would aim to address any misinformation, such as claims that you cannot have children with a diagnosis of lupus.
Within this community we have members who have had a diverse range of experiences of lupus. It is important that we acknowledge these and remember that what happens to one person will not necessarily happen to another.
Thank you for sharing. I hope that you continue to manage well with your lupus and can support other people living with the disease.
Thank you for that positive post. It’s always great to hear of a lupie living a normal life!
I think the nature of these forums means people will mainly turn to them when they are not feeling good, when they looking for answers, help or reassurance.
I’m one of the lucky ones. I can do a couple of 5/6 mile hikes and a few Pilates or gentle fitness classes each week for a few weeks running sometimes. I will have to pay for it in the end either with total fatigue or a flare.
I suppose I could cut out all that activity and avoid the flares and fatigue, but that would depress me greatly. This is how I choose to spend my energy quota.
I’m devastated that I have this condition but I’m grateful that it is not as bad as it could be. It takes a while but learning to live with what you have is key, and I’m still trying to accept and learn.
I’m grateful to and will continue to be grateful. Don’t get me wrong I still get tired and have achy joints but I find that happens when I’m stressed but I power through.
This is a great post, thank you! I'm so glad you're living a great life. I am being investigated ..they're thinking it could be more sjogren's than lupus but I came on when I was searching for support and answers etc which I got...but through nobody's fault it just terrified me reading everyone's comments. Like I said, nobody's fault at all...I sympathize with everyone but when you're at the beginning and worrying how much worse things might get...it's tricky ready everyone's histories of trauma and symptoms.
Thanks for this positive post that shows these tricky conditions can be managed and great lives are possible around them xx
I'm so pleased to hear about your life and the positives, congratulations on having a family. It lovely to hear some good news.I guess lots come down to having a good rheumatologist, having the right medications to control the disease( trial and error for many, which can take months) age I think comes into it to as many have had it without realising what it is and there's other health factors that cloud the murky waters of many symptoms with age.. This leads to many tests and a long road to diagnosis.
I empathise with this, and all of their worries and pain. In tandem, feeling great joy in hearing positive stories like yours, it's wonderful news, especially for a young person, with their whole life ahead of them. Long may it continue for you.
Hi Lupie2021I'm glad you are feeling so positive and are in remission. I'm just coming out of a 10 week flare up and I know it's easy to fall into a black hole when you feel so rough but what you say about "powering through" is very true. A positive attitude works wonders and funnily enough so does exercise. I'm still waking up every morning feeling, literally, like I've been run over but I take my dogs out for a 3 mile walk across the fields and although sometimes I have to force myself, I always feel 100 times better when I get home. Like you I go into remission for months or years at a time when I just get mild manageable symptoms and I can live life normally. It's a horrible condition but like you I'm going to keep looking on the positive side.
it is a horrible condition the things I went through before I got diagnosed was awful but thats what makes me stronger today. Always look on the positive it’s hard sometimes but you can do it x
You have no idea how much I needed to read this 😭 I’m newly diagnosed with Tumid Lupus and about to be diagnosed with SLE (blood work says yes so I’m very much prepared).
You’ve given me the best gift anyone ever could - hope.
Awww that’s so nice of you. I just want people to know there is life after lupus. If you need any help or advice just message me. Happy to speak about my journey and what I did to recover etc xx
Well said. I get tired of the wallowers - those who dwell on the negative aspects of any condition.
They drain the lifeblood out of excellent forums such as this
Great post, thank you. I was diagnosed about 7 years ago with Sjogrens Syndrome, then Fibromyalgia, Reynauds phenomenon about 5 years ago and now Chillblain Lupus. I’m also Diabetes Type 2. Initially I was told that I should only be doing about half an hour exercise each day, I can’t remember how they came to that conclusion.
However, since being diagnosed with Sjogrens I’ve walked my dogs for 1-2 hours a day and for the last 2 years I have also been doing Zumba for half an hour most days. I’ve found that if I don’t do my Zumba I start suffering with back, hip and even knee pain! For all those people who focus on the negatives of your conditions I say this: Listen to what your own body tells you but exercise is important. If you don’t exercise you will feel worse because exercise gives you energy after doing it regularly and keeping moving, even doing chair or floor based exercise will boost your mood and you’ll be surprised at how your spirits improve. Don’t give in without a fight as you are the only one who suffers.
Keep fighting guys, my love and understanding goes out to all, especially those who are newly diagnosed. You can still enjoy life and anybody who turns away because of your diagnosis are people you are better off without anyway, even though it might upset you at the time.
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