Every single person I know knows I have lupus and I think not being closed about it has really helped because I dont feel like I have to keep coming up with explanations or anything. It usually comes up because of my fingers (Raynauds) or when I have to tell them to take the elevator if we're walking together. People are much more accepting and knowledgable about it than you would think! I tell complete strangers at work and you would be suprised how many people will say oh I have a cousin/friend/aunt/coworker/other long lost relative who has lupus too. I typically go out late once a month if that and I don't really stay up late most of the time. Im usually in bed and asleep before 11 at the latest lol that could just be because Im boring though.
When it comes to balance thats still something Im trying to work out. With school and work I've told all my profs and my bosses and so I am allowed more absences in classes and at work I can only work 4-5 hour shifts which is much easier on my body. I try to get alot of down time between work and school. Weekends are my bf/friend time after work and by that time I usually don't do anything more than watching movies because Im either too tired or Im afraid I'll make my feet act up. As bad as it sounds the first thing I cut is classes I know Im doing alright in. I figure sleeping in one day and missing one class will be better in the long run than going and driving half sleep and then wearing myself out more by walking around campus all day when I already dont feel good. I always rest when I need to.
We're basically the same age and both college students with lupus. Thanks for posting on my intro thing. I wanted to know if you had any more tips for balancing everything. Do you still find yourself getting tired and sick? What do you cut out first or decrease when that happens? Do all of your friends know about your lupus and does it help if so? Teachers?
Are you able to go to parties often/stay up late with friends?