hi, i'm new to this...
Hi everyone, my name is Jennie and I'm a 21 year old student in Cheltenham, England. I was diagnosed with Lupus at Christmas and have good days and bad days like you all i guess. However this week has been the worst it has ever been just because of the pain in my legs and chest and my lack of energy. I am normally a very enthusiastic and adventurous person and there are so many plans I have for travelling etc but now I feel like I can't do any of that as I can barely walk to the Uni campus this week. I know that I will feel better again in a few days but it just gets me down sometimes that I can't lead the active life I had anymore. How do you pick yourselves up again? and also do you find that a lot of people don't know what Lupus is and so don't understand what you're going through so you just don't tell anyone?
Thank you for reading this, Jennie :)
Welcome, Jennie. You will have ups and downs, to be sure. Your doctors will help you find the right 'cocktail' of medications to help you manage your disease, but you can take some control yourself. Get lots of rest; avoid stress when you can. You may also need to stay out of the sun - lots of those with lupus are photosensitive. There's no doubt it will be a big adjustment for you. It has been for all of us - at any age. But, you will probably have times that you feel pretty good and are able to do some of those things you used to do. And sometimes lupus can go into remission - a period of time when your symptoms may disappear. It's unpredictable. Please feel free to visit this forum whenever you need someone to give you advice (we have some VERY knowledgeable people here) or just someone to 'listen' and support you. Glad you found us, Jennie.
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just remember that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D
Unfortunately, I find that many people are very ignorant about Lupus and they just do not understand what people with the disease actually have to go through. It's very sad and awareness of the disease is lacking, which I think is part of the problem.
Keep well! :)
Jenni, I do feel for you.
I am the Mum and also the wife of Lupus suffers and have been doing a lot of research on this disease.
My son was diagnosed with this when he was only 26, and lost his career in the Army, here in Australia because of it, as he gets blood clots from it and has to take Warfrin all the time and as such was not deployable. This nearly broke his heart, and since then has found it hard to get employment, as people are scared that a clot may go to his lungs, or cause a heart attack or stroke. However, he now has this under control and at the moment is renovating his house.
His father, I think had had this for a number of years, but went undiagnosed till only two weeks ago, with the discoid rash that appears being put down to sunspots. It was harder to diagnose for him, as he has taken Prednisone for years , because of asthma.
There is life, once your meds kick in and you get it under control.
Please dont let it rule your life completely. Take each day as it comes and make the most of it.
We are off to a BBQ today, at our eldest son's place.
Have a good weekend the rest of you.