Feeling frustrated and unheard
 

I need to vent please. Im so tired of this disease!! Im weak on the right side and have that foot drop but not bad enough to get that boot thing for it. Im taking my shots faithfully... ouch!!

My legs are numb from below the knee to my ankles, and my toes will go numb at will. I keep tripping and falling because I cant tell where my feet are stepping. My eyes are still making me see little flashes of light, but it has gotten better. I use to be great at the typing, but now I hunt and peck... so embarrassing!! I have noticed a few times that when I go to read something, my eyes start shaking, like going side to side.

My limbs jump ALL day!! My right foot jumped so hard the other day, I actually screamed because it hurt. This insomnia is going to make me crazy!! I have not slept more than 3 or 4 hours a night for the past 2 weeks. Im so worn out but cannot sleep. Im like a zombie going thru my day. Thank God I dont work anymore. I have given up things I enjoy in life because of this disease!! Work, driving, walking thru a grocery store..... It has taken so much from me and just keeps on taking.

I can just feel 'ME' slipping away and making room for this new chick! Im usually pretty positive about all this stuff, but lately Im feeling beat down. I try to tell my dh about this stuff, but all he'll say is 'Im sorry' and then he carries on with whatever. Its like he doesnt hear me at all.

If you're tripping and falling, you might want to see about getting the AFO (the boot thingie) It might help your walking.

I've got an AFO, and it really does seem to help, even when my feet are numb and tingly and I'm not sure where that droppy foot is going. Physical therapy is helping me too.

Sorry to hear you're going through that...I'm thinking that feeling that way is probably a symptom of chronic disease, especially debilitating disease, in general. That feeling of "losing" yourself, missing the "old" you, etc. It stinks.

You know what, I think your husband really DOESN'T hear you. I swear that men have ears that filter out anything remotely resembling emotion. I don't think most of them do it on purpose, they just can't process emotion. My daughter says, "Hey, even the best dude is still a dude".

I don't say that to excuse him if he's dismissive to you or whatever, just that I experience the same frustration, and there's no doubt in my mind that my husband loves me and cares about how I feel. He just can't FEEL how I feel.

Back when he was diagnosed with cancer, I wanted to TALK about it (of course), get him to "open up" about his fears, his concerns about how it could change his life, how we'd deal with various scenarios. He said, "There's no point in talking about it, it will be what it will be."

I know this doesn't apply to all men, and there are men and women here on NeuroTalk that understand and will listen and will share. We'll help each other find ways to cope. Sometimes just knowing somebody else thinks the same thoughts and feels the same feelings helps.

no advice, just hugs. :hug:

I hear you KL. :hug:

This is a dirty, dispicable, painful, mean and lonely disease and sometimes unrelenting and unforgiving. It sounds like your DH is doing the best he can, under the circumstances. After all, there is no cure and nothing he can do, but stand behind you all the way and comfort you.

I hear you loud and clear KL......wish I didn't.:rolleyes: This miserable disease just continues taking away more and more of our "old" lives until we're somebody we don't even recognize. I hate it!:mad: Does anyone without MS really get it? Don't think so. Thank goodness for our friends here at NT who DO get it and are here to share and support.:hug:

I get it as much as I can because CMT takes and takes as it progresses. And sometimes, kind of often now, I wonder who I have become from what I once was. And I'm not happy. Of course age comes into play as well. So far I am healthy except for CMT. I hope it stays that way. Hang in there.

Sorry you're going through a rough patch, KittyLady.

One thing I'd do is think what I'd do if the situation were reversed. What would I do for my DH if it were him instead of me with MS.

My DH died a few years before I was dx with MS so I've never known how he would have reacted to me having MS. Maybe you could just talk to him and tell him you're feeling disconnected and need him to just listen and confirm that he hears you. Men are sometimes not good at this.....I know my DH wasn't.

i really feel for you, going thru such a rough time.
however, i feel like you should see your neuro for an exam.
some of your sx's (symptoms) might be able to be tx'd (treated) with meds.

you might even need a PT evaluation which could help with your leg/ft sx's.

i just don't think you have to suffer with all this. if your dr won't listen, time to find one that will.

please keep us posted.

:hug:

I hear you.

If your husband doesn't hear you, you might need to make a louder noise. Or a softer one. Or change tact in some way that he "gets it."

Best to you, KL,
ANN