Main » May 2006

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 at 7:36 AM | Comments (2)

May 18, 2006

How to cope with fatigue??

I can still remember back in my LBL (life before lupus) how I would bounce out of the bed as if I was on springs. I long for those days every day now. It seems like it takes me soooo long now to get out of bed-between being too tired to want to get up and too swollen to get up easily-it is just nothing like it used to be for me. I get in these moods where I throw myself a pity party every now and then and simply long for the way my life was. It is not good for me to do that and I know that but sometimes I can not help but to feel sorry for myself, my children and my husband when I think about what they lost as well as myself. I try so hard to keep things close to normal but somedays it just seems like too much. It is hard for me to know what the right answers are-how do you deal with being so different than you were? I try to make jokes alot like I bet it is easier for lazy people to gert lupus because they never want to do anything anyway-LOL. But the truth is it hurts sometimes. I can not believe this is my life-I keep waiting for this remission in which lupus may never rear its ugly head again but so far that is elusive. I have some really good days but they never seem to last and it is worse by people who say stupid stuff. We know who these people are they say "I can not believe you are having so much trouble-my aunt has lupus and she is fine" or they say "Maybe you are not doing everything your supposed to, my cousin has lupus and they never swell up like you are" just stupid stuff........................................it gets on my nerves!!

I have to close tonite at work and then open in the morning and I am already exhausted beyond belief right now-too bad I can not just sleep for about 40 hours-that is what I think I need.

The fatigue is so bad sometimes that I just want to lay down and not have to get up. If anyone with lupus has some useful tips for beating the mind-numbing fatigue PLEASE share.

Namaste

Posted by Lisa at 7:53 AM

May 16, 2006

Long time no see :)

Finally I am back online-it has been forever!! First of all let me say it was nice to read the comments-it reminds me of why I am doing this even though at times it is sporadic-I was offline for so long due to money problems. It is not only physically, and emotionally a draining disease but it is also financially difficult.

I am still in the midst of a "flare" and I have started a new job about 6 weeks ago and I just keep hoping that I can keep it together so I do not lose this job. I am managing a retail store which is GREAT money and I love the job but it is so demanding and too many hours and I wonder honestly how long I will be able to do it. It is between 60 and 75 hours a week which is hard for someone in good health but even harder for someone who has a constant fever and swollen achy joints.

I have had a bothersome symptom lately also. I have had the numbness and tingling in my legs, arms and private area for over a year now (coming and going) but now I am waking up every night with my arms tingling really bad sometimes I have to wake my husband up to rub them because I can not move either of them well enough to rub them. This is really troubling me-if anyone reads this and knows what could be triggering it PLEASE tell me as it is scary, anyway that is all for now-take care and NAMASTE :)

Posted by Lisa at 5:30 PM