[chaos]

My husband is not supporting me emotionally with all the stuff that is happening. He's like this any time I get sick, like with a cold. He acts like I feel much better than I do. Last night I came home and my wrists hurt so bad that I actually wrapped one up in an ace bandage to see if that would help (and it did, surprisingly). He was like "are you really that bad?" He then got into an argument with me this morning saying I'm not doing anything he suggests and I only do what the docs tell me to do (which is untrue, and the argument was much longer and worse than just that). He has some control issues, obviously, and the fact I won't be controlled makes him upset (yes, we have other issues, he's also selfish and not respectful). He's an "energy healer" and every time he touches me to "heal" me he hurts me. For example, I ask him to rub my feet and instead of just lightly rubbing them he starts yanking on them and twisting my foot around even though I explain it over and over. He never actually does reiki on me. He actually thinks the meds I'm taking are making me worse, which if you ask my legs, they are helping a ton.

I can't deal with somebody who can't help me when I need help. If you're going to be part of the household, and I need help, then help me when I ask for it (like with dinner). I can only get my 10 year old to help a little. I also work full time and he's supposed to be a SAHD but ends up playing video games a ton. And no, he won't deal with his own issues either.

Seriously, besides some supplements, how much can one do to help treat this horrible disease without getting pharmaceuticals? Especially if it turns out to be hereditary (I go to the Neuro on the 26th, I'm going to ask them to test me for CMT type 2)? What do people who don't have a support system do? What alternative therapies actually work?

[sweetbirch]

Hi there, I'm new. I wonder what your illness is. and if I might be able to help you with some girlfriend support. You obviously could use a shoulder. Hugs
Sue

[chaos]

I'm still working on getting an exact diagnosis from the doc. I started with neuropathy in the feet, went up the legs. Been managed by meds for the most part and then my hands started hurting a few weeks back. I've narrowed it down to the radial nerve on my right side as hurting the worst. Makes grasping things hard. Ruled out diabetes, while my vit B12 and thyroid was off, it wasn't so off that it caused the PN or SFN. I'm just getting worse all the time, on a functioning level. Thought it was caused by a 2nd/3rd degree burn to the tailbone, but all the docs have said no, and now with my hands, I'm assuming they're correct.

I think I need a maid and a cook. And be able to sleep for 12 hrs at a time and be up for 16 (I've complained my whole life days are too short to both sleep and be up enough). I've also been the rock in my family for too long, having a daughter with HF Autism and a husband who probably has it too and is super co-dependent and wants attention more than I can give. I just wish he'd support me more, both physically and mentally. I work full time and come home totally beat mentally, and now physically because my hands hurt.

Maybe I should just tell my husband to go get a new girlfriend, as long as she comes over to cook and clean! It's nice to have friends over because they always offer to help with dinner if I'm making it.

[hopeful]

Hi Chaos,
It is really hard to work full time with this disease. I just recently stopped working. I was fortunate that I had disability insurance. My job is allowing me to keep insurance for two years. In the mean time, I am applying for SSDI. I heard it takes a while to get health insurance from them so many I'll have it by the time I need it.

I don't know what your situation is but sometimes you can get almost as much as you were making. If your husband has insurance that would be a great help.
Believe me the decision to stop took me a long time. I loved my job! I have been out now since November and I'm beginning to accept it. It has taken a lot of the pressure off me and my husband. I know I don't think about it enough but it in very hard on them too. I am in no way defending your husband there is no excuse for being a bully and disrespectful.
Take a look at if he is like this all the time or just off and on. My husband does it off and on. We just had it out a few weeks ago. He finally explained to me it is so hard for him to see me like this. He feels it is his job to make things better and feels helpless.
Maybe if you can get your husband to just talk you can find out if there is a reason for his behavior.
It is devastating enough to have this disease without marriage problems. Sending you hugs!

[chaos]

Right now I'm the only bread winner. My husband could NEVER make what I'm making. I just got promoted too. My job really isn't super stressful, and I don't have to be on my feet at all, so if I can get a handle on my wrists during the day, I'll be fine (for at least a little while). But if it gets worse, then who knows. I live in NorCal, which is expensive to live, but worth it. I'm getting a medical settlement soon, so depending on how much I get, there is always a possibility of moving to a cheaper area, but I need to be around city life. He'd be happy in the sticks. But I will have to evaluate all that once I find out what's really causing all the PN.

My husband's issues are once in a while, he has SAD so it's worse this time of year, he'll be at least a little better in a month or so. His mom had early onset Alzheimers, and him seeing me like this reminds him of her, which is totally stupid, but at least he can admit that. But he flat out doesn't want to help with a lot of things (like cooking). We've talked about how he needs to step up his help. I wish he'd get a job, but our daughter needs so much attention. He has caregiver burnout from being a SAHD, so maybe that's why he's treating me the way he has? I just wish I could fully get through to him.

[mrsD]

While I cannot really bring myself to comment on an unsympathetic husband, I will say this:

Make sure you have control of YOUR money/earnings....this is very important.

From what I see here in this post, you need to protect your income, and future. If you have to, seek a family attorney and make sure your unsympathetic husband cannot get to the family funds. In my long life I have seen many horrible situations, that
occurred because this was not done by the female breadwinner.

[hopeful]

Originally Posted by chaos

Right now I'm the only bread winner. My husband could NEVER make what I'm making. I just got promoted too. My job really isn't super stressful, and I don't have to be on my feet at all, so if I can get a handle on my wrists during the day, I'll be fine (for at least a little while). But if it gets worse, then who knows. I live in NorCal, which is expensive to live, but worth it. I'm getting a medical settlement soon, so depending on how much I get, there is always a possibility of moving to a cheaper area, but I need to be around city life. He'd be happy in the sticks. But I will have to evaluate all that once I find out what's really causing all the PN.

My husband's issues are once in a while, he has SAD so it's worse this time of year, he'll be at least a little better in a month or so. His mom had early onset Alzheimers, and him seeing me like this reminds him of her, which is totally stupid, but at least he can admit that. But he flat out doesn't want to help with a lot of things (like cooking). We've talked about how he needs to step up his help. I wish he'd get a job, but our daughter needs so much attention. He has caregiver burnout from being a SAHD, so maybe that's why he's treating me the way he has? I just wish I could fully get through to him.

I'm surprised to hear he isn't working but refuses to help with cooking etc. I don't know what to say except this is too much pressure on you. Most of the time my husband is great with me. It is just every now and then that he gets cranky. If you have insurance maybe you may want to try counseling. Sometimes men need a third party to tell them what they understand the problem is. Good luck with everything.

[chaos]

He won't go to counseling with me at all. I already know that I have a choice to put up with him or kick him out. Right now I need him. In a couple years maybe not so much as my daughter will be older. The other day I yelled at him because I needed help cutting potatoes and he was playing some stupid video game. He didn't move at all. No response from yelling. I really don't know why he won't help me with dinner. He claims he can't cook, but I can give instructions and he still won't help. My daughter won't help much either, but at least I know she has a developmental disability. I'm pretty sure he does too, but won't admit it.

The money I will get soonish will be for me, he will get his own settlement. I'll put it in an acct with my name only. I will talk to my lawyer and make sure it's protected for me. He won't fight for it, he doesn't fight to be able to see his son right now, he's too lazy and disorganized to take care of himself at all.

I just keep thinking about all the automated things I need to get, can openers, tooth brushes, vacuums, etc. If I do kick him out, I'd be on my own, so either way I need to learn to do this crap by myself. He's proven that he can't support me when I need it.

[Susanne C.]

My husband and sons are pretty supportive, but I have always been a SAHM. If your symptoms do turn out to be CMT, you may need pharmaceuticals, there is nothing but palliative care. Type 2 here, similar progression, but further along than you. It is always progressive. Cutting potatoes is nearly impossible, but for some reason men and boys find it very difficult to learn.

I am planning on getting a cleaning woman. Is that a possibility for you? I also have a son with Aspergers Syndrome ( high functioning autism), but he is 28 and teaches in China. He inherited it, along with CMT, from me.

[chaos]

Yes, I want to get a cleaning person as soon as I can afford it (I'm really close right now). I also need to figure out more ways to be able to cook without it being too much of a burden on me. It's hard because I don't eat many pre-prepped meals, most have onions and meat. My daughter and husband are vegetarians and I'm allergic to onions. I think, at least at this point, I need to do more Sunday cooking, while my hands aren't overworked because of my job. I need to figure out what I can make and freeze, it's not easy in our house. At least my daughter watches me cooking, she'll be able to really help out in the next few years, right now she's still too young to do things like cook with oil or take things out of the oven.

Sigh...as you all know too well, this seriously sucks.