May 24, 2006

How much sleep is too much and how much is too little?

Some days it seems like I can sleep for 15 hours without waking up and others it is a struggle to stay asleep at all. This is my first day off in over eleven days and I was hoping to go to the mall and get some things done but all I have done is sleep and catch up on my email (not at the same time-LOL).

This new job (it is not really new anymore) has really taken a toll on me but I do not know what else to do. The money is great but the job is hard and very physically demanding. It seems like there is so much to do and I can not get it done and done right. They do not want to give me enough hours to run the store the way it should be run and that makes it very hard also.

We had a VP visit yesterday at the store and they said it was the best the store had looked since they could remember and that made me feel good at least they did notice all my hard work but at the same time, it was like talking to a brick wall to get them to understand we need more hours, not just my store but all of the stores the company owns. It is impossible to keep the store as neat and tidy as I would like plus get all the freight on the shelves and take care of customers and do the paperwork and the myraid of other responsibilites when I can not utilize my help in the best most efficent manner.

I try to remember what my doctor said-STRESS=PAIN, but my gosh-my husband has told me since day one, if I took this job he would take care of the house since I put in about 60 hours a week and he works 40, but that is not being done-he has Saturday and Sunday off every week yet today is my first day off in eleven days and I have had to cook dinner every night this week and last week and make sure the kids are doing their chores and doing all the follow through because he is still doing nothing. He gets off work and he is done for the night. I get off work and have to come home and continue working and I am fed UP!!

I think the biggest part of my problem right now is through friends I have heard in the past week about three people with lupus dying. I get scared especially when I am still running a fever so much and I am so swollen and sore everywhere. It just serves as a constant reminder that I am not the person I used to be and I will probably never be again.

My mother and my stepfather are getting divorced and that was a big surprise-they have been married for almost twenty-four years-he was having an affair. My mom is really struggling because of this and she has COPD and other health problems and I am worried about her and now I am so far away in Florida and I really think I need to go home and try to be there for her. My husband is going to throw a fit if I suggest going home. Part of the reason we moved here was because his mother was alone and I did feel like we should be here for her even though she has two other kids living in the area, but now I feel bad because my mother is alone. I wish I had a guardian angel who could tell me what to do...................then again I am sure we all do.

Posted by Lisa on May 24, 2006 7:36 AM


Well, IMO you don't have to fix dinner. The kids can survive on PB&J until your DH (and D is not dear in this case) gets his act together. Do the absolute minimum to get yourself and the kids together and leave everything else. If he doesn't do laundry, then wash your clothes and kids clothes and let him wear dirty clothes.

Posted by: Anonymous at May 26, 2006 3:06 PM

Well Lisa, what you are feeling is totally normal. I think the REAL problem here is that your hubby is not understanding what you are truly going through and is taking you for granted. This is NOT to start an argument with him - heck, most people really don't get a clue about Lupus and it's affects on us. My hubby is pretty good, but then again, I don't have children to deal with and a job.
You need to STRESS (have a family meeting) that, if you are to continue working, everyone needs to pull their weight, especially him. You should not have to be dealing with the stress of trying to work more than full time and then trying to run a house. It is tough enough on a healthy person, much less someone with your health issue(s).
Stress not only equals pain, but it equals major flares.
Now, the situation with your mother: I am so sorry that she is going through what she is having to deal with. Especially with her health issues. But you cannot go and rescue her and you have your own health and personal issues to deal with. Running to her side sounds like it might be a good idea, as anyone who loves their parent would want to do the same, but she will understand if you cannot physically be there. E-mail her regularly, if she uses a computer, and send her comforting cards, and call her, but you need to focus on your own life and health and personal needs right now.
I have read more lately about some people dying of Lupus and it is a reality, although we are so lucky to be living now instead of 20 plus years ago, when people routinely died of Lupus complications. We have treatment options now that are causing most cases to be able to be controlled. Some can't be. I am struggling with an unusual presentation in a flare right now and they are not being able to control it at this time. It is similar to Lupus Nephritis in many ways, but is NOT so they don't know what may help. Chemo is being done. However, the reality that I could die has occurred to me more than once. I, like you, tend to look at others who have it so much worse and downplay my own situation. My husband gets angry at me, because he tells me I have to realize that my own situation is serious and I need to focus on taking care of me. He is in his 50's, so, unlike your younger husband (I assume), he has had the time to grow up and has had reality checks along the way.
My advice: Once again, have a family meeting and tell everyone if they don't pull their own weight, you will have to quit work, things will be financially more difficult and everyone will suffer. So, it is up to them to help out. Plain and simple.
Support your mother from a distance, OR have her move closer to you. She will be fine. Women face this type of thing everyday and you may find out just how strong she really is if you let her handle what she can and be there emotionally (without letting yourself get too stressed) for her. Just loan a great listening ear, but don't let it drag you down.
Pace yourself at work. You are working way too many hours and hard, from your description, and this WILL affect your disease processes negatively. TAKE CARE OF YOURSELF so you can be around for your family.
Prayers for you as you deal with your issues.

Posted by: Jeannie at May 27, 2006 7:57 AM