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-   -   Facing The Unknown Alone (https://www.neurotalk.org/the-stumble-inn/66447-facing-unknown.html)

legzzalot 12-16-2008 02:52 PM

These words were written to me by my best friends after I got diagnosed and it was very touching and thought I would share. We are all filled with the what if's that is nothing to be scared of or ashamed of there are not a whole lot of knowns to this disease.

We'll always be here, though not much of a shoulder to cry on, maybe just to remind you every now and then that when you are on the ground, all you can do is get back up. Granted as your friends we reserve the right to point and laugh before offering you a hand to help you up. But we will eventually help you up and maybe even remind you now and then that even though things hurt, life hasn't stopped, and there are still things to do and to enjoy.

Debbie D 12-16-2008 03:16 PM

Kelly,
You're not being a baby...you're being very logical in thinking about your future.
First of all, our children need to understand that they sometimes need to pitch in and help.
Second of all, you have some resources to help you, such as the NMSS, NT, etc., that could probably give you info on how to get supplies, etc that might be needed.
And third, never count out the possiblity that you might meet someone. You never know!

My DH has been super with all of the stuff going on the past month. But I feel so guilty...yes, we said "in sickness and in health," but I still feel bad for sticking him with a sick wife.

Know that you're not alone. Try to save some money for a rainy day. We're there for you!:grouphug:

SandyC 12-16-2008 03:22 PM

(((((Kelly)))))

Gazelle 12-16-2008 04:53 PM

Quote:

Originally Posted by legzzalot (Post 428697)
These words were written to me by my best friends after I got diagnosed and it was very touching and thought I would share. We are all filled with the what if's that is nothing to be scared of or ashamed of there are not a whole lot of knowns to this disease.

We'll always be here, though not much of a shoulder to cry on, maybe just to remind you every now and then that when you are on the ground, all you can do is get back up. Granted as your friends we reserve the right to point and laugh before offering you a hand to help you up. But we will eventually help you up and maybe even remind you now and then that even though things hurt, life hasn't stopped, and there are still things to do and to enjoy.

Wow! Keeper friends. Lucky one you!

Yep, Kel. I understand what you're saying. My H doesn't really care. He acts as if there's nothing going on. Doesn't even try to understand.

My best friend drives me nuts with his daily overconcern. How are you today? How are your legs? How's the arm? How's the fatigue? <heavy dramatic sighs> It makes me focus on how I feel and I don't like it. I'm stuck between wanting to cry and wanting to throttle him.

My kids don't seem to notice. My son seems to get it better than my daughter. She could care less, at least that's what I take from her attitude. She's like my H. My son is more solicitous. He actually worked with me for a while when this was really bad so I think he gets it without letting it show.

But being alone? Yeah. I am scared. And I miss the companionship. And I miss someone taking out the trash when I just don't think I can drag myself to do anything ONE more time in the day. It's a mental fear, a physical fear, and...... I miss being able to lean on someone even for a routine thing and having them lean on me.

life's so blooming complicated.

NurseNancy 12-16-2008 06:00 PM

i know what you mean too.
i've had to be strong to keep up my activities of daily living.
sometimes grocery shopping and even folding the laundry seems like too much.

i have some good friends where i live now and know they would be here for me in an emergency. my bro too. but they have families and work so i basically have to do all for myself.

even when i dealt with my breast cancer i did it pretty much by myself.
but, having friends to talk to and to call me meant everything. even my far away family watched over me long distance.

i wonder if your local MS society and/or your pcp might have some ideas we're not thinking of in terms of help or planning.

you're definitely not alone. thanks for bringing this up.
as long as we have friends here and people to bounce ideas and problems off of we're lucky.

Jules A 12-16-2008 06:13 PM

This is an informative thread. For now I also have a supportive spouse when it comes to financial things which I know is huge and I am very thankful. As for MS though he pretends it doesn't exist and I know that if/when I am not able to function at a decent clip it will be very difficult for him to accept and also nearly impossible for me to be gracious.

Like you feel about your children having a nice life is also how I feel about my husband. I don't want to be a burden to anyone and work like a dog now in hopes of banking enough money for the time if/when I need to hire someone to help with my ADLs. :(

I guess what I'm saying is that with many spouses, even really good ones, the bottom line is that most of us are now or will be alone with this nasty disease in the end. That is why so my friends here mean so much because they totally get it. There aren't too many wonderful spouses like Jim's Sandy ya know.
:grouphug:

SallyC 12-16-2008 08:41 PM

I knows what you're saying, Jules. Even though my DH did get it and was extremely supportive, he was helpless and felt so, when it came to my MS. He wanted to fix it, but he couldn't.. I can't help feeling that, that frustration may have helped to shorten his life..:(

Yep, I think we are all alone in this, no matter how supportive and loving is the Spouse or SO.

:Sinking: :grouphug:

Kitty 12-17-2008 05:15 PM

Quote:

Originally Posted by SallyC (Post 428889)
I knows what you're saying, Jules. Even though my DH did get it and was extremely supportive, he was helpless and felt so, when it came to my MS. He wanted to fix it, but he couldn't.. I can't help feeling that, that frustration may have helped to shorten his life..:(

Yep, I think we are all alone in this, no matter how supportive and loving is the Spouse or SO.

:Sinking: :grouphug:


Awww, Sally, don't blame yourself. :hug: My DH never got the chance to react to my MS....so I'm not sure how he would have been. I know how he was whenever I was sick....very helpful almost to the point of being irritating! :o There was a period of time where he kept after me to quit my job...thought it was too stressful....boy, am I ever glad now that I didn't. Not sure what I would have done......

Momma's Kids 12-17-2008 05:37 PM

KItty...I think you are being thoughtful rather than a "big baby"...you have concerns which are valid. I think you would be a big baby if you didn't voice the concerns for you and your family.

PolarExpress 12-17-2008 11:15 PM

(((Kelly)))
You've dared utter the words everybody thinks about but never mentions..:cool:
I think it crosses everybody's mind, even those without a chronic illness. I know I've thought about it..Not marriage (oh, he!! no)..Just living alone in general. It's great job security for my pets, though~:)


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