Emotionally, I sometimes do get depressed but luckily I have some very good support so it does not last long. It is hard to know what is causing some of the emotional symptoms as the medication is sometimes to blame. For example, I had a nest of big red flies living on my living room ceiling for a while. They disappeared with the med that was causing it. But how do you tell that to a friend? This is one of the greatest problems for me. I can mostly only share with lupus people as others do not understand too much. It is a crazy illness that I have had for many years, possibly 35, but I have just been diagnosed a year. What more can I say. I laugh, but I think it might be hysteria!!!! Just joking!

My symptoms include rash, hair loss, mouth ulcers, general muscle and joint pain, rheumatoid arthritis, oesteoarthritis, Trigeminal neuralgia, peripheral neuropathy, carpal tunnel, blackouts and dizziness, chest and rib pain, continuous sore throat and swollen glands, fevers, headaches and sharp pain. Memory and confusion problems, loss of feeling in toes and fingers, urine infections, dry eyes and mouth.

There are many manners in which I cope with my illness. I try to get about as much as possible. I got myself a dog. We have people to the house more than before. I meet lupus people a lot. I manage with this support and my friends. But it is difficult. The upside is I have learned to enjoy simple things that I did not notice before, so even a ride through the park with my dog, on my buggy, is a great experience. The down sides coincide with contact with doctors. Mostly they are great but the ones who do not know about lupus, or are just plain rude, make a difference. They can change a good day into a bad week. If only they knew. If they think it is frustrating to treat lupus they should try having it!

What I'd most like to tell my family is that I feel pretty rough most of the time but I cannot keep telling them because they would probably find it frustrating, especially as they cannot do anything about it. So I would like them to realize and remember that I do not ever feel too well, but I keep the news for the times I feel worse. So when I say I am fine, I actually mean, I am feeling ill but I still need your support and understanding as "fine" is not a good place to be.