I'm really trying hard not to make this a depressing/downer post. Let's hope I succeed......

I was just watching The Doctor's on television and there was a young woman with macular degeneration and she had been declared legally blind. She was there with her husband who was incredibly supportive and understanding. He stated that he thought God had put them together as a couple to face this disease and support one another. It was very touching.

This got me to thinking about my situation - and others here - who have to face our disease alone....or without a spouse/significant other to help and support us.

It's scary sometimes....especially when I think about all the "what if's" of aging and facing those years alone. I know I have children but they need to lead their own lives and I don't want my situation to alter their plans and dreams.

I know there are things I can do now to plan for the future but there are also lots of unknowns that we can't plan for...no matter how carefully we think we've thought things through. Plus, it's hard to do much planning when money is so tight. I suppose that's true for anyone's life....disease or not. Alone or not.

Most of the time things like this don't bother me.....but lately I've just been thinking alot about how much I've had to deal with pretty much by myself and how it would be so nice to be able to at least share the load with someone else....preferably my husband but that's not possible......and what's in store for me later in life.....and what I'll do and how I'll handle things.

I know things can change....and I may not be alone the rest of my life....but it's really looking like that now....and I'm not helping matters much by not really participating in "life"....but it's hard when you don't feel much like doing anything so much of the time.

Am I just being a big baby or does anyone else in this situation ever think about stuff like this....or worry about how you'll survive without a spouse later on in life?

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.

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.

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. 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.

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!! 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 .

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!

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.

Kitty,

You are not being a baby. 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.

Well, I am surviving, in later life, without a spouse.. 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.. ....but I so understand how you are feeling and empathize with you, dear Kelly..