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Chris420
08-10-2006, 11:16 AM
Hi; my name is Christine and I've had lupus (neurological) for a long time now. My symptoms just seem to be getting worse and my life is spiralling out of control. I can't seem to get up and try to involve myself in life anymore. I'm constantly afraid of having a seizure in a public place, so I am home alone 90% of the time. My husband is getting really fed up with me; my fatigue is so bad that it's really hard to keep up with housework.

I feel useless; especially compared to my previous life. Can anyone relate?

ButterflyRN
08-10-2006, 11:27 AM
Hi Christine. First let me say welcome to our forum. There are many of us that can relate to the fatigue and not being able to keep up with housework. It's hard to not be able to function like you use to. You expect to be able to do all kinds of things and then find out it's just not in the cards. It can be hard to deal with. I hope that you start to feel better soon! Know that we are all here for support of each other so vent any time. :D

Beauchick
08-11-2006, 07:50 AM
Hi Christine,
I'm sorry to hear that you are having such a hard time. I can relate. I have gone from having 10 to 12 hour work days, keeping the house, and being a social butterfly, to I'm lucky if I get out of bed before 9:00. I have gotten rid of my 2000+sf 2 story house because it was too much to handle. I now live in..don't laugh..a single wide trailer....that has become, at times, too much to handle. We are building a house that is suppose to be more functional for me. We looked at worse case senerio down the road, wider doorways for if I ever need a wheelchair, a stand up shower and a tub for those days when I don't know weather to sit or stand, no florescent lighting, etc. I am 32 years old and I'm building a house around a disease. I understand feeling beaten down and having to rely on other people not only for physical support but emotional and mental. That in it's self is hard, especially if you were always independant. I don't want to say anything bad about your husband and he being fed up with you but he needs a wake up call. Maybe you could get him to come to this site and read some of the post here. I don't think anyone could read some of the heartache here and not walk away with a different perspective. The fact of the matter is this is not only hard on us but those around us but this is not something that we asked for and unfortunatly life and lifestyles have to change. Your stress levels can dictate how you are going to feel and we are all here for better or worse, sickness and in health. You have to find a happy place for you both. My husband has been great but I'm starting to see the worry in his face and so are other people. He has never worried....that was my job because I handled everything. He approched everything that you do what you can and if it was ment to be it was ment to be. That is ok if you are talking about finances or about every day life but this is a different ballpark. He realized that on his own thank god. So I was so thankful when I found this website. My "sickness" seemed to be all we talked about and I think it made it worse for him. Now instead of venting to him ALL the time, I give him a break and come here. Sometimes just reading and not posting is all the help I need. So please, take a deep breath and let go of some of the frustration. If you don't feel you are getting support at home, come here. You can also email me anytime. :lol:

Your New Friend,
Kathy

beautifulbeluga
08-11-2006, 11:03 AM
Hi Christine:

Hope today is better for you than yesterday when you posted. Yes, I think probably everyone here can identify with your feelings of uselessness in comparison to previous life (before illness). I know I can, and yes it is probably the most difficult pill to swallow. When I get thinking this way I try to allow myself a short term "pity party", and then get on with my "one foot in front of the other" life model. I mean really what can we do about it? The best we can and there ain't "no more", my friend.

My husband has a saying that is probably true (although sometimes his wisdom makes me nuts). It goes like this "we have nothing to fear but fear itself". Take care my friend.

Patricia (beautifulbeluga)