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My wife has CIDP (chronic inflamatory demylonating polyneuropathy) and has for almost 30 years. It is a degenerative disease. She is absolutely the toughest person I have ever known. Even though she has her "down in the dumps" days and feels like the disease has finally won. She seems to get back up and go again. She is still working and wants to continue. I support her in that. We feel it keeps her active and busy. She is a secretary and can handle that position from her power chair. My stress level reaches the max as I try to keep her there. I feel guilty as I can't seem to find enough time to do it all and my job. I think the biggest thing is to be able to talk to some one that understands what I am experiencing and doesn't think I am looking for pity. The farther the disease advances the more dependent on me she becomes. (I am not complaining. We are in this together!) I feel like if I talk about it, people think I am complaining. I am between a rock and a hard place. Sounds kind of crazy I know, But somebody understands what I mean!!! We have been married for 37 years and I wouldn't trade her for all the healthy women in the world!!!!!
Ted
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Ted, your beloved wife is so fortunate to have you by her side. But it can be so hard at times... My advice is as follows and I hope you find some value in it.

First of all, let some things go. Close off that extra bedroom and let the dust build up or box up the nic-nacs. Try not to worry about the little things.

Accept help if it is offered. Perhaps if you belong to a church, there may be some program. There are some volunteer organizations such as Faith in Action that can provide some help to you. Their website is: http://www.fianationalnetwork.org/

Don't try to be strong all the time. Express your fears to your wife. Maybe you already have but, if not, give it a try. I think its a good thing.

Also, if need be, check with your work. You may be entitled to leave under the Family Medical Leave Act. I believe it might allow you to have some more flexible time arrangements if that would help.

My prayers are with you and your wife during this time. I wish you both many sunny days together.

Hugs, Glenda
Hi, Ted.

Your stress level is coming through. We hear you. Kudos to both of you for fighting to keep her active. You both sound like special people.

My husband has been retired on disability with his back for over 10 years (he's 62). He tried to keep working, but ended up spending all his off time resting just so he could go to work. His bosses finally asked him to take a disability pension so they wouldn't have to lay him off during a big round of downsizing. His condition has stabilized, but he does get depressed that he can't hold up to help me do more around the place. With the economy so flat right now, it's really difficult and stressful getting by on the reduced income.

Glenda gives great advice about small things you can let go of. The main thing is that you have definitely found a safe place to vent or just tell us how you are doing.

Hang in there, Ted. (((Here's a cyber hug for you.)))

Barb

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