Can anyone share their own experience with me on what it is like to deal with this illness on a day to day basis, if you have limitations on what you can get done, if you are able to work, how tired do you get, does the fatigue come and go or do you find yourself constantly exhausted, does the tiredness come directly from having the connective tissue disease or do you have some form of blood disease or organ involvement that causes it?
Do you exercise and eat healthy? Does it really make any impact on the way you feel?
I am taking online medical courses right now and I'm really having a struggle with it. I wanted some time off but my doctor thinks I should keep pushing myself into doing it. I think he's right. If I can't manage this, how am I going to manage working. I'm so stressed over worrying about how I am going to be able to handle holding down a job. I would figure the majority of employeers would not understand or care that I have limitations and would expect me to work even if I have a bad flare up. If your doctor writes you time off, the employeer can't exactly fire you over that though, right?
Please share your experience with me on what it is like to deal with this "energy" wise. I know the pain is always there, well for me, I deal with both of those problems but my fatigue is quite severe. I don't understand how this disease makes me so tired. Without plaquenil, I would sleep 20 to 22 hours a day. It is not affecting my blood, I do not have organ damage, I don't understand why/how it would drain my energy like this.