I HAVE BEEN LIVING WITH LUPUS FOR OVER 18 YRS OF MY LIFE. SINCE I TURNED 50 YRS OLD MY HEALTH IS GETTING WORST. LIVING WITH THIS DISEASE IS VERY DIFFICULT. I JUST HAVE A HARD TIME MAKING MY FRIENDS AND FAMILY MEMBERS UNDERSTANDING WHAT I FEEL. BECAUSE THEY LOOK AT ME AND I DON'T LOOK SICK PHYSICALLY. WHEN I'M ALONE AND IN SO MUCH PAIN I JUST CRY JUST TO RELIEVE MYSELF. YOU NEVER KNOW ONE DAY TO ANOTHER AND I DO HAVE FAITH AND I STAY STRONG BUT, WE ARE HUMAN AND WE DO BREAK DOWN FROM TIME TO TIME.
Hi Mich! I know exactly how you feel. I was dx'd in '96, so I guess that's 14 years (yikes, I hadn't thought it was that long). I have a good doc who is pretty helpful with the pain end of thigs, but I still hurt all.the.time. I guess there's no way to get rid of it completely. I have come to realize that no one can 'get' what it's like to live with a chronic disease unless they have to deal with it as well. My mom had RA from age 18, so I only knew her that way, but I never really understood the challenges she had until I got tagged by lupus.
I have days that being strong is just not an option. I have a lot of CNS problems and I think dealing with the depression end of it is maybe the worst. So, when it's one of those days, I become some sort of hermit, even in my own house... I just shut down. Not a great solution, but the only one I have that keeps me from being a weepy mess with every word.
Welcome to the boards, you'll be among others who get it.
thank you for sharing your story with me. It makes me feel better knowing that you understand what i'm going through. I do appreciate. I have ra also and that is so painful i have lived with for years and years. Again just another one of my problems to deal with day in and day out.