wanting some one to talk to that understands
hi I joined this so I could find someone with lup... - LUPUS UK
hi I joined this so I could find someone with lupus and that could understand the way I feel, I am 18 years old and got diagnosed at 15.
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kayleyburge
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15 Replies
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Hi there Kayley, I'm nowhere near fifteen, closer to 50 to be honest, lol. But do understand how it feels to be unwell and how tough it can be to come to terms with this diagnosis and illness.
I think if you get in touch with Paul from Lupus (on this site - maybe trawl through some other questions to find his e-mail or there's an administrator too) you could e-mail them for an information pack. But you've done the right thing by joining this site, everyone is so caring and understanding - and most of all know how you feel.
How does the lupus affect you? Mine makes me so tired, and causes pain in my joints etc.... also sun makes skin problems much worse.
Take care and stay on here to get any questions answered, the other members have so much knowledge and experience it's great to share info.
Mines basically the same, the tiredness is the main problem as I have a 2year son that is fall of energy. I find it hard to do the normal day to day things and activities with my son. I was hopeing to find someone close to where I live that I can talk to- im still finding hard to come to turms with it all and sometimes I brake down and think im not strong enough I just dont want to feek like the only one.
Hi,
I'm 20, and was diagnosed around 2 and a half years ago. If you ever want to chat, just send me a message 
Also, there is a young persons Lupus group for people between ages 16-24. If you send Paul a message who runs the site, he'll sort you with being added to the group.
Take care
Hi kaley, glad you had the courage to contact this site. Afraid I'm an oldie, 52, but it makes no difference to our symptoms. I feel for as you probably want to enjoy your youth with the energy and zest of your peers. You are fully entitled to want to be carefree and have nothing to drag you down. But it's not the end of your life, it's a new start with maybe a slower pace and a few hiccups along the way. We all have the same goals no matter what our age is. My goals are different, I just need to keep being an active part of my family, because it makes me feel better about myself. I'm sure your goals are much more exciting than that. If not, then they should be. !!!! The one thing that we all share, is how we manage with lupus. You can talk to twenty teenagers but unless they have lupus, they will never understand. Keep in touch, we can all offer our experiences with medicines, rashes, aches and pains, or even symptoms that you are unsure of. Take care x
Hi kayley , Im 35 and recently been diagnosed and I thought it was the end of life but the ppl here are so supportive , they answered my every query , and I feel so much better now , and have decided to start treatment in a few days . If u look around in this blog site you would find answers to most of your queries . Be strong, life sometimes takes an unplanned turn . Let's make the most of it and benefit ourselves from what new researches in medicine can offer us in terms of treatment . Hope you find a good doctor first
My immune system crashed through my 20's and at 29 it all came to a head. I thought my life was over, 25 years on - it still isnt. I had 3 little ones and yes I missed out on some things, but I dont do too bad. On the other hand friends I have known who were fit as fleas have have been outlived by 10 years and more. The future in not yet written, dont try to second guess it.
Hi kayley! Totally agree with what's been said....for me the most important thing is to stay positive. Lupus is a pain but I'm the eternal optimist...I hope tomorrow will be better! Some days it is. Listen to your body and do what you can to stay active and strong but when you have had enough, slow down and re-charge. Try and be positive and surround yourself with others who are positive. Don't forget your family and friends are on this journey with you and it's probably new and a bit scary for them too. Take care and keep in touch!
Hi Kayley. I've been living with Lupus since I was 19 years old. I'm now 36. It has it's challenges, but what keeps me going is having a positive attitude. Resting when my body says so, limiting the sun and enjoying my good days. Take one day at a time and listen to your body. If you eat something and feel worse after, check it. If you exert yourself and become exhausted for a week, then you know you over did it. Use that to determine how far you can go. Try and still do the things you love when you can. You can live a good life and be happy. Don't let Lupus define who you are. Let it be a part of you.
Contact paul from lupus uk! His contacts are everywhere on this forum. If u can travel theres a young peoples groupbthat meets in london every 8 weeks or so. Stay well x
Hi Kay I am 46 now and was diagnosed with lupus about 20 years ago. My S.L.E. has never gone into remission, so I am always tired and achy. I have 2 boys 6 and 9 and they are full of energy, you do what you can and I am sure your son will understand. You will need support from family and friends. But you only get one chance at this life, so make the most of it and control what you do, don't let it control you. I was lost the first 2 years I was diagnosed, I went to see psychologist and it helped a lot. They told me I was strong enough to make my life a good one, and I did. I am sure you are very strong , so make your life a good one.
It was a very bit hit to the system and I still don't think I believe it and it's been 3years. I'm slowly learn my limits and what I can and can't do but where I'm young I feel like I should be able to do these things, it gets me down because I see all my mates running around hear there and everywhere and I sometime find it hard to walk around my flat when I'm having a bad day. I was hoping to find someone close to we're I live so I could have a friend that understands everything, my mates say they understand but Until you have it you really don't understand.
LupusAdmin3LUPUS UK
Hi Kayley,
Can i ask where you live? We have a young persons group (18-24 year old's) who meet up every so often for a chat, the next one is due to take place at the end of this month in London (don't know if this is possible for you to get to?)
I have attached a link to our websites page for more details below for you. Unfortunately this week, Paul, who is normally the point of contact for these meetings is on annual leave, but if you would like to email him next week regarding the meetings he will be more than happy to help. paul@lupusuk.org.uk
Alternatively, If you would like to speak to somebody sooner or if you are unable to make the London meeting i can send you an information pack which contains some useful booklets on the symptoms, diagnoses and also has contact details of people who are close to your age living with lupus for you to speak to over the phone. Just give me a quick email with your address and i can pop one in the post for you. hayley@lupusuk.org.uk
And of course please do feel free to use this forum as much as you need, or if you have any questions regarding anything else please get in touch with us here at the National Office on 01708731251 and we will be more than happy to help.
Best wishes,
Hayley
LUPUS UK
Hi Hayley I have sent you a email and would be a big help thank you. Don't suppose anyone know a website that I could go on to find people local to me that have lupus?!
hi all went for my medical last year and they put me support 2 work they dont evan know about lupus she said well if its not in ur brain u can work they forget the pain u are in and how tired u get wish the ppl would read up on it thats 2 help u see what sort if day we have from we get up till we go 2 bed total joke wish they could feel what we feel
weetheresa again ask lupus uk or go on there website they are a great help with benefits/employment issues... and tammie i wish you were around when i was diagnoised very wise words i was diagnoised at 41 and it was hard for me so how youngsters cope with the diagnoises i dont know, i find its not just the lupus but everything else that goes with it ie sjyorns/raynaulds/cfs hope ive helped someone
