So, no longer a newby now, but still with lots of pain and progressing.

I know that others have posted this, but would like anyone to give me new ideas.

I am somewhat literal, and before the pain and tingling, I did not realize how often people inquire about how you are, and I don't just mean as a greeting.

My husband has stopped inquiring and now tells me that I will lose friends if I continue to express my pain.

BTW, I am fairly private, so I am not going on and on.

I am getting to the point to saying okay, but even that is met with, you aren't good?

I thought by the weight loss and haggard look from not sleeping well, there would be more empathy.

Is is just a different planet we are on from normal people now?

Help please, wise ones?

People come in all shapes and sizes...emotionally as well; My experience has been that they shy away and let 'someone' else ask. Or they smack me on the arms and say, how the heck are ya?
Don't stop being yourself, I too am a private person; when how are you is a greeting and not a care/concern, I nod and say, Good day....if they say, hey, are you hurting real bad today....then I answer as I am feeling....
Losing those kinds of friends makes one think, where they really 'friends' in the first place....
It's hard either way, so I wish you the best. Hope venting here has help somewhat....

I tell everyone that I'm fine. Even on my worst days. It's just easier to lie and end the inquiry rather than babble on. I get the impression people don't want to constantly her others complain. Even loved ones. Once or twice a month I'll break down and complain to my wife but that's usually when I'm about to hit my breaking point.

I have a small "in the know" group at work. You would imagine more would notice, but even on bad days tge signs are more subtle- no cane or device yet, but I am measured in my movements.Walls, furniture, fast friends here.

I have been a homebody forever, even in my "wilder" days. I see the sadness in my wife at times.

I use I am fine, fantastic, great with the general populace.

I hope you have some support from friends. Mine have saved me, especially last year when the pace/duration kicked it up.

My best,

Jon

I get asked how I'm doing by my friends a lot and most of the time I say I'm doing ok. They say that doesn't sound very convincing and I just smile. And that is with my closest friends. I will tell my mom the truth when she ask. I know she wants the real answer. My husband ask and I tell him. I try not to complain much to him but I often just say my legs are killing me and he says is there anything I can do. I just say no I just needed to say it out loud. To be honest sometimes I want to scream it out loud to everyone!

Baba you may want to tell your husband that you are feeling upset because he stopped asking how you feel. My husband did that a while back and when I told him he honestly didn't realize he was doing it. Let him know you don't want sympathy just some support.
At least when we feel alone we can always come here to share and get support.

when things go wrong you find out who your friends are and there wont be many

So true, Echoes!

This comes up so often, it really is a measure of how isolating chronic illness is. We have a painful, debilitating, often progressive disease and the need to be understood is overwhelming. The likelihood of actually being understood is minuscule.
I am in pain all the time, even with a decent medication combination, usually a 3 or 4 on that silly pain scale. It is bearable but it makes one hesitate before getting up to go in the kitchen, getting out of bed, taking a shower, getting dressed,leaving the house. Every action gets weighed -"is it worth it?" Everything takes a ridiculous amount of energy and willpower. I know I make faces sometimes when I start to walk, it hurts to unbend myself from the car and get on my feet, the pain subsides a bit once I get started and comes back later.
My husband wants to fix things. He can't, but a good massage of my legs feels better for a little while.
I agree that you need to let your husband know that you have a need to talk about it for a few minutes. Then change the subject. Give him a job to do for you, something concrete.
I have friends over ever week so their teens can hang out with my son. They see how I am. When they ask I tell them and change the subject. One of them cleans for me which helps so much so she knows more about how I am doing. My kids are largely in denial because they need me to be there for them. My youngest, 16, who has had major orthopedic surgeries, notices everything and over empathizes. I try to protect him from being my nurse, but he is determined.
Even within my limited circle, and with the restraint I practice, I feel like they all get tired of hearing me complain and yet I still don't feel anyone understands how wearing down this is. This emotional isolation may be the worst part.

I no longer have many problems with people.... I groan, sigh and limp along. I typically get more help now in public than before.


I walk with my hiking pole now, and that educates people. I do get stared at sometimes.
And I do agree with Echoes, too.

Yes, this is spot on. I am also somewhat ashamed of even responding. Someone has suggested journaling, but that makes it even more painful and I would not like for my husband or child to read it.
If not for NEUROTALK, I do not know what I would do.
And I know that I am probably not in as bad a shape as most.
Still going through the stages of grief.