Depends on how bad my day is

Hi Christy! That would vary on how bad my day is! Some days are bad and I manage to be able to cope. Coming in this site, talking with my mother, my children or even laying in bed watching a movie and just resting, even reading or doing a small craft. Anything to take my mind off my disease, I will try doing.
I used to care what people thought and now I deal with me!
I too see days of being lonely because I can’t get out and function. But I try to do the things above just to get my mind off having the bad day.
When I get a really nasty massive attack on my nervous system and am in my home by myself while my husband is working. That can be very scary and at times, I would lay on my sofa and cry and pray it would soon pass and be over with. Now that is a really bad day!
Worse thing! Family and friends don’t really understand what you are going through because they have not been there and have not felt what you have felt. My husband still don’t understand me when it comes to me being sick. He know’s I am sick but just don’t get the concept. He still see’s me as being normal at times. And then I think he get’s tired of dealing with me hearing it over and over again. At least I feel this way but he really does not show it, but I feel this way.
I have learned over the years, that they too worry about me, and what I see happening.. is that they place me being sick out of their heads so they can cope and see me as being normal. They let their life go on as usual! But it makes you feel like they don’t care! If we were healthy.. they would be the same way! What has changed is us! We have become sick and we know we are very sick but the healthy ones in the family don’t understand. My children have experienced a virus and the flu and they don’t see their mom being this sick because they have never experienced what you are going through.
My middle daughter was also diagnosed with Lupus 3 years ago! She used to treat me like dirt! Boy she gave me a time in her teen years! Here I was sick and having to deal with a mouthy teen that knew it all! Puberty years!
When she started getting sick, she started coming to me and apologizing to me and told me how bad she felt for treating me so badly back in her younger days. When she gets flares she calls me up and wants to know how I dealt with this nasty crap! Her Lupus has been mild form and we got her diagnosed early. When I started seeing symptoms in her, I got her to go see a doctor for it! They did a skin biopsy so we would have the 5th criteria. And since I had lupus the doctors decided to check her out and she was positive. She had a few positive ANA’s in her teen years too and I suspected lupus.
As much as I hate to say it! Only the sick understands the sick! That is why we are more supportive and understanding.
Hope you feel better Christie! Been there many times over but I think we all in here and felt the same way! Hugs
Linda H