Facing The Unknown Alone
 

Kitty, no, you're not being a "big baby". Having a supportive husband makes all the difference for me. He doesn't ever ask me how I'm doing, but he's always here when I need him.

I don't know how you single folks manage. Bravo to you all. :hug:

I'm in the same boat. I wish I wouldn't have been so selfish when i was younger. It was always about me making money and spending it on me. I had fun to be sure and I wouldn't change everything but I should have gotten serious about getting married. Gonna be a long shot now for me too. I am trying to make myself feel better by getting rid of all my debt and saving, saving saving. At least I hope to be able to buy some help when I really need it later. Pretty pathetic. :(

If I had known back then what I know now I would have saved more and spent less.......but hindsight is always 20/20. :rolleyes:

My husband was 18 months from being able to retire with full benefits from GM when he passed away. They could have gone ahead and retired him so that I would at least have had medical coverage for the rest of my life but they wouldn't do it. :mad: I didn't have MS back then so they dodged a huge bullet without really knowing it.

I know none of us knows what the future holds.....or if we'll even be here to experience it......but I feel like I need to make some sort of provisions for myself now......just don't know what! :(

Kitty, I agree with Twinkletoes, in NO way are you being a "big baby". I am so sorry that you and others have to go through all of this alone, I can't imagine how scary it is not having anyone there to help you that much:hug:.

I know I don't have MS (although RSD is pretty similar) but I am SO lucky to have my mum here to help and support me. It makes the world of difference to me. If it wasn't for her, I would probably not have been diagnosed yet and I don't know how I would have made it through the past few months without her. My dad doesn't understand RSD and the fact that I keep falling and it's very frustrating if I am in the house with him and I don't feel well and in a lot of pain as he just tells me to stop being moody and that i'm just being a typical teenager. He doesn't understand how painful RSD is and how it makes you really fatigued and is always telling me that if I "just got out more", I would feel better.

I often sit here and think how lucky I am to have my mum. If it was just me and my dad, well, I don't know if he would have been able to cope. He wont go to the hospital with me (he's been twice in the last 21 months) and it really frustrates me. My mum is also worried and keeps asking and begging him to come to the hospital but he wont, he say's he can't stand hospitals as they make him feel sick!!:eek: My mums asked him several times what he would do if anything happened to her and he just say's he doesn't know and that he will have to cope somehow. I just wish he would get his act in gear and start understanding more as it really frustrates me and my mum.

I really feel for all of you that have no one to look after you and support you. I honestly don't know how you cope and wish I could help you in some way. I often sit here also worrying about the future and how I would be able to cope if my mum wasn't here. It's a really scary thought being alone and I can't imagine how you all feel :hug:.

This is a really interesting thread, Kitty, thank you for bringing it up!

for 15 of the 25 years I raised kids, I did so as a single mother.... and for a decade I was paired with a wonderful man who was frightened and frustrated by my MS, and started drinking a LOT to numb his pain.

that meant I was alone, even though I had a mate... if you get what mean.

so I understand about coping, and NO, you're not being a baby!

:hug:

Kelly,

If you are being a big baby, then let me get in the playpen too. I have the same concerns.

I think about this alot. What if's ??? What if I fall down, or wake up and cannot move? How long will it take for people to notice I am not around or not answering my phone? I have estimated that it could take up to 2 days for help to arrive if it happened on a weekend. My closest siblings live over 500 miles away, and they are not exactly jumping up and down and saying that I can live with them in the future if I needed help. I have seen how they sometimes get annoyed with my mother when she needs help so ... It is easier to just tell them I am doing okay, and then they get shocked when they see me.

My younger sister has said that I could live with or near them in Texas when I retire or have to quit teaching, but then she keeps reminding me of how hot it is down there.

I know they all would help me, but I do not want to ruin their lives with my problems.

So, I have been paying off all of my credit cards and car, and should be completely out of debt by the end of summer. I am also trying to save money although I have lost 1/3 of my IRA in the past several months. I have been checking out the costs of assisted living facilities. I probably could afford one as long as the great State of Illinois pays my pensions.

So I have done some planning, but I know I probably should meet with an attorney to decide on other issues, including my wishes regarding medical issues.

So know you are not alone. I have always been independent, but now I often feel envious of those who have a supportive spouse. But then I have also read posts from individuals who spouses are leaving them or cruel to them because they have MS.

:hug::hug::hug:

Kitty,

You are not being a baby. :hug: :hug: :hug: You're just having practical thoughts, I have them too even though I have my DH. I think about the what-ifs and it actually helps me to be more thrifty.

I was a stay at home Mom until about 12 years ago. I haven't saved all that much for retirement yet so I'm trying to do it now because I could need to retire any day now (thanks to MS.)

All we can do is keep on going, saving if we can and try to be healthy outside of MS.

If DH died young, and I live to my 90's (like my Dad did) I know I wouldn't have enough to take care of myself for that long. I might be able to if I can keep working until my regular retirement age (17 more years!)

Kelly - You are not being a cry baby at all. You have brought up a valid concern that many of us have regardless of our "relationship" or "medical" status. However, I really believe that you will never be alone as long as you don't "allow" yourself to be alone. There is always someone there willing to help out.

I will say though, that I would much rather be alone than have a husband/boyfriend that is not supportive at all. For me, that would be far worse than being alone.

I get what you are saying about the kids. There is no way that I would want either of my girls to feel they couldn't do what they wanted in life because of me. So I understand what you are saying.

I don't have a big plan for what I will do when DDs move out other than living with DBF. If I start thinking about all of it, it overwhelms me and I have to take a step back and just deal with getting through today, tomorrow, and next week before I can think that far ahead. There are far too many, What if's. But, like you, I have the same concerns.

Besides, Kelly, you do have all of us for support and you know we all just love you.:hug::hug::hug:

Well, I am surviving, in later life, without a spouse..:eek: And, no, you are not a baby.

I, like you have great Family, who don't let me feel, like I'm alone....and just why shouldn't your Kids alter their lives, to be sure and include you????:)

I feel my DH is around and talk to him often...sometimes he even answers, in a spiritual sorta way.

I'm a bit older and have NOOOOO desire for another spouse..:eek: :D....but I so understand how you are feeling and empathize with you, dear Kelly..:hug:

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.

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:

(((((Kelly)))))

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.

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.

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:

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......

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.

(((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~:)

You know what I think of Kelly . . . you must have had a wonderful relationship with your hubby :) to feel that having someone full-time would be a desirable thing. :ROTFLMAO:

I envy what you've had though . . .

I have not found it hard to meet good men, even with having this disease and being mostly anti-social . . . but I guess I am just not the marrying kind. I can't imagine ever being that comfortable to make a lifelong commitment, probably because I made that "mistake" before. :eek:

Have you thought about interacting on a "social" site on the internet. I met many men on various sites, including my current b/f (from Georgia). I met him on BOLT, which was a music exchange site. We talked for many months until he finally came here to meet me a few years ago . . . and he'd marry me tomorrow if I would give in. :p

I've also met some really nice men with MS on the various forums . . .

Of course you have to be very careful about checking people out, and getting to know them well before you agree to meet . . . but I know a lot of people this has worked out for.

Cherie

Hey kitty, see post on what are you thinking. i am thinking of trading a very ambitious hard working man for a nintendo wii. You can have him.

Wow I didn't realize this was an option. Hmmmm maybe I'll send mine to Kitty also. He even scoops cat boxes. :D

Let's start a collection. We'll see how many men we can round up for kitty!

http://i243.photobucket.com/albums/f...ychristmas.png

:ROTFLMAO: Too funny!!

Cherie

I've read your post several times, Kitty, and deleted an equal number of posts. As someone mentioned, you brought up something that most of us think about at some point, whether currently "alone" or not.

I used to think my mother was being morbid when she'd say, "Well, if anything happened to your father, I think I would..." I remember thinking, "Ugh, don't TALK about such things!"

Now I think she was wise. She wasn't borrowing trouble or becoming obsessed. She was considering a possible reality, and assuring herself that she would have options, as difficult as they might be to consider.

Losing Bob has been a huge fear for me even BEFORE I got sick. Now I realize how much I depend on him in many ways and sometimes I find myself facing "what if". He'll be 73 in the spring; he has COPD, mild coronary artery disease, and he's already had cancer once. What if he's not here, or simply unable to "take care" if I need serious tending to.

Sometimes I do what Mom did, sketch out a back-up plan in my mind, aware that life has a way of blind-siding us no matter how many safety nets we organize under ourselves.

I have to keep reminding myself that the future isn't in my hands, and I trust God to provide, even though I really, really want Him to lay out the plan for me ahead of time. He says, "I'll take care of you", and I pester, "Yeah, but how? How are You gonna do it?"

Once something happens (like losing a spouse, or having a chronic disease, or both) we're already on Plan B. I know that with your attitude, you can turn Plan B (or C or D or...) into a good life, no matter what happens. God will make a way.

I give all the singles so much credit. I am not sure I could do it with as much style or grace as what I have seen displayed here.

I have a friend who has been married for a while. she hasnt been the healthiest of creatures, but her husband makes it so much easier. He went to the dump and dropped off the weeks trash, and...dropped dead! He had been having chest pain for about a week, but didnt want to burden his poor wife with worry. Went to the MD who said his cholesterol was soaring, but he was in decent shape. When the MD asked about any pains, or worries, HE LIED! He said "nope, Im good doc." and because of his age, the EKG and work up was skipped. He mentioned it to a couple of buddies who encouraged him to spill it to his wife, but he never did.

I have seen so many widows in this little town who not only survive, but thrive, and have found a way to lean on each other, and take care of each other. I know that I would not be able to do as well, or survive and thrive with the same grace, and style of these women.

God Bless you, and keep you for you are strong women indeed. :hug:

Thank you, B2Y & Dejibo......I appreciate that. I'm trying not to stress about it because, as you said, God will take care of me. Like my Dad always told me.....life is what happens while you're making plans. :rolleyes:

I'm really not a "worrier" as it may seem from my post. I'm more of a "ponderer".....I think about "what-ifs" but really don't get to whipped up about it because it is what it is and worrying doesn't do anything but make MS worse.

And.....strange as it may seem.....I'm not sure I could adapt to a person in my life full-time. I mean, when I was dating I would be thrilled to go out on Saturday afternoon/night but I wanted (and needed) Sunday to myself. I'd gotten used to being by myself and I kinda liked it. Of course, I was working then, too, so time alone (really alone) was scarce. I'm not sure I could adapt to someone elses way of doing things.....messin' up my routine. And.....I'm not sure if anyone could stand me full-time either! :eek:

Kelly, to me, this is not strange at all. I get this 100%!

no wonder we get along so well ... a girl knows what she likes ...

PEACE AND QUIET .... MINE MINE MINE MINE!! LOL

Aww sweetie, your gonna be ok. :hug::hug::hug::hug::hug::hug::hug:

Carolyn:hug:

I didn't either, after being alone for so long... I worried about "adjusting" to living with another person...

but stranger things have happened, I recently fell in love, and got remarried (7-7-7), and....... guess what?

I STILL ponder!

I constantly ponder that if he gets injured, I won't be able to drive him to the hospital, or walk to a neighbor's and get help.

I ponder about our vehicle... will it break down in the middle of nowhere? and will I expire from exposure to the elements?

:eek:

I ponder that perhaps, with the economy in its present shape, we will not make it in a foreign country, and be reduced to paupery.

I ponder regarding the US... will they go bankrupt? (an unprecedented 25 banks have FAILED this year!) and will my Social Security stop coming?

I ponder that perhaps he will tire of a cranky, in-constant-pain, middle-aged, disabled woman, and seek solace in the arms of a strong, healthy, able and willing young lady.

the pondering doesn't magically end with being married...

:o

I know!! I've gotten so used to being home alone most of the time that when the boys are home and making all sorts of racket I just have to retreat to my bedroom and close the door. I feel like an old grouch....but I have to admit that since being dx with MS noise has bothered me much more than it did before.

Sometimes it concerns me how much I enjoy having my peace and quiet....no drama....no excitement....just calm and relaxing. http://i283.photobucket.com/albums/k...s/chilling.gif

Sheesh, Kay Stop all that pondering, right now!! :D