Maintaining job duties

My husband has CIDP and it's progression the last year his symptoms have ramped up severely. He's a teacher & has a countdown going 'til the end of the year for the first time ever - due to his pain. He's hoping he'll be able to recharge over the summer break and be able to go back to work in the fall for the new school year.

He's also really concerned that he won't make it back to work with how things are progressing. This worries both of us quite a bit. I'm already on disability and we have 2 kids with special needs. We won't be able to survive with both of us on disability and in the time in between while he applies and waits to be approved (assuming he gets approved).

How many of you are able to still work? Or changed jobs to keep going?

I do IT work so I sit at a desk most of the day and I can even work from home when things get bad. You said your husband is a teacher maybe he can get a job with a online school something he can do from home most of the time.

We've actually talked about that. He's hesitant to look into it because it means admitting defeat on some level. I'm trying to get him to be the one to do the research of what's needed to make the switch. By the time he gets home, he's so worn out from pretending everything's okay that he crashes. I'm struggling with what or how much to do for him to help and not enable him to give up. Thanks for replying. :)

Jast said:

I do IT work so I sit at a desk most of the day and I can even work from home when things get bad. You said your husband is a teacher maybe he can get a job with a online school something he can do from home most of the time.

That's a hard place to be in. I get were your husband is coming from its hard to accepted when you can't do something any more.

I would try and find a good day maybe a weekend where he is not so tired and have a talk with him about what’s going on. If you don't feel like talking would be positive at this point. You just research as much as you can that way if he does ask\need help later you will be in a much better place to give it when he is ready.

I am sure your doctor is doing everything they can but if he has not tired all of the 3 major treatments maybe it’s time he talks to his doctor. I get IVIG and IV steroids every 4 weeks for 2 days plus I take Cellcept and Prednisone daily. I was doing really good till a month ago when I had a flair up. I thinking of trying Plasmapheresis if I don’t start to get better soon right now I am kind of stuck. I have read some people that don’t get better or do poor on IVIG do very well on Plasmapheresis.