I thought I'd take the time to welcome you to our group. I'm Rob, and I was diagnosed with SLE in 2004. I am 40 years old. I am very sorry to hear that you were diagnosed with this disease. But, I would imagine, you are somewhat relieved to know what has been causing all of your seemingly unrelated symptoms. I know I was. It's a double edged sword. You don't want to be sick, but you need to know what is wrong, because, like the rest of us, you probably knew deep down that something was not right.
You have a very real disease. It IS NOT in your head, and you are not a hypochondriac. Lupus is indeed a serious disease, but it is also something that can be controlled, and dealt with effectively in many cases. It is not an end by any means. We have members here who live with, and thrive despite Lupus for many, many years. One member has been living with it for over 40 years, and my own mother who is now 72, has lived with it since her diagnosis in the mid 90's. So there is every reason in the world to have hope, and be positive.
It can be difficult, and sometimes impossible for others to understand this disease. Many of us, myself included, look perfectly healthy. I look like a fit guy who takes decent care of himself, and those who don't know me, would never suspect I have any health problems at all. That can cause a lot of stress, tension, and bend relationships with friends and family to the breaking point. How others will react to you, and your new diagnosis, is something you cannot control. Some will try to understand, and some will not. But that does not change the fact that your first priority is to take care of you.
What should you do? Well, I believe you are already doing what needs to be done. You have a definite diagnosis, and you are taking Plaquenil. Plaquenil is one of the best tolerated, and most effective drugs prescribed to keep Lupus under control. I've been taking it for more than four years now with no measurable bad effects. I dread what my disease would be like without it. It does take time to work though, so you need to stay on it even if at first it seems to do nothing. Sometimes up to six months pass before any benefits are seen, but not always. It took a couple of months for me. You are also reaching out to others with Lupus, seeking advice, and support. That is a very, very good thing. To be able to talk to others who understand can be as good as the best medicine out there. It can make a huge, and positive difference. Especially for those who are newly diagnosed.
Practical things you can do are things like wearing sunscreen, and avoid the sun whenever possible. I live on the coast of Maine, and we don't get much sun anyway, and I would imagine in the U.K. it's much of the same. But I always have my sunscreen and hat with me in case I need it. It's very hard to do, but you should also avoid stress as much as possible. I know, sometimes it's inevitable, but any reduction can help you avoid a "flare", as we call it. My last suggestion, is something it sounds like you are already doing. Learning about the disease can help you become a more informed, and educated patient. An educated patient can be their own advocate. Many, in the healthcare industry worldwide, are ignorant of the facts in regards to Lupus. It's a sad reality that we must sometimes deal with. Take charge. Know the disease you are dealing with, and be assertive, with your rheumotologist and other various specialists.
Look at me, now I'm the one writing a long post! I want you to know that you are not alone, and that you are welcome here anytime. This site is about support, and communication. Never be afraid to talk, vent, cry, tell a joke and laugh, whatever you need. Make yourself at home.