[SeamsLikeStitches]

Well, I guess it was too good to be true...

I started dating a guy a few months ago, and he saw my first "episode" last week. It wasn't stress related or anything, just a rough week. When the cane came out of the closet, he got scared and decided to walk!

On Saturday night we went to the movies, everything was fine, we had a great time. Sunday morning we went to his daughters soccer game, then out to lunch. I noticed a little "distance" in his attitude. I asked about it. He said he was "concerned" about my PN and thought that maybe it was a little more than he was ready to handle.

In the beginning of the relationship, (when we decided to be "monogamous and serious") I told him about the PN, explained what it was and how it worked. He seemed pretty o.k. with it. Of course, he couldn't see the effects at that time. Just that I can't wear high heels and walk very fast.

Well, last week, when I wasn't able to go out with him when he wanted me to, and I had to get the cane out of the closet for a few days, it was a reality check for him. I needed extra sleep a few nights, I was feeling exhausted and felt my body just hitting a wall. I knew if I didn't get some rest I was going to be dragging for a while.

So, he packed up all his "overnight" things he had at my house on Sunday when he left and we decided we would no longer be "monogamous" and he would "call me" later.
Basically, he is too shallow and scared of what this might turn into and he doesn't want to have to take care of someone who might be an invalid in a few years!

This is the reality check! This is the scary part! Being single with a disease! When you finally find someone, and you do start to like them, what if you do get worse? What if you do become less mobile? Is it fair to ask them to stay with you? Is it fair to ask that person who barely knows you to "stick it out" through thick and thin to see if you will rebound?

Should I just accept the fact that I am going to be alone for the rest of my life? Who is going to want to be with someone who is disabled?
Why would someone want to start a relationship with someone who is eventually going to be disabled?

It doesn't matter how pretty your face is, if they have to pick your butt up from a wheel chair to put you in bed, how romantic is that? If they didn't love you "before" you were in that wheelchair, what's going to draw them to you after you are there?

[Silverlady]

These are very real and tough issues. I really hurt for you. Wish I could give you more than a cyber-hug but here is one anyway..

I can't even imagine what it would be like to be young like you and suffer from this disease. But I have to say that someone who really cares for you will be able to see past the disease and love you for you. There are people out there who can actually do this. I've known a few.

I know other's who suffer from Sjogren's Syndrome like myself. Some of them are young. This is a progressive disease. The young one's ask, "When I meet someone, how soon should I tell them about the disease." The answer is not always clear. I personally don't think you should immediately jump in with "I have a disease that may put me in a wheelchair". But at the same time, I think you should be upfront with what you are going thru. Anyone who is going to stay for the long haul will find themselves doing just that.

Your young man was honest. At least he told you why he couldn't stay. It clearly frightened him. Respect him for that.

I wish you happier times soon.

Billye

[dlshaffer]

Well, heck. Is there any kind of support groups in your area that might "fit the bill?"

[MelodyL]

Yeah hon. It' like when you have a specific condition, you join support groups, and you get to know people with similar problems.

Since you know what you have and that there are flare ups, perhaps if you find yourself a support group you might meet others with similar problems and right off the bat, there won't be any SURPRISES!!

See, this guy obviously would be there for the short haul, but what you need is an honest, compassionate man who will be there for the long haul!!!

Not an easy task. Some people are up to the challenge. Others are not.

It's a darn shame. He lost out. Not you.

I wish you well.

Mel

[SeamsLikeStitches]

He didn't hang in there longer and "pretend" he could handle it. It scared him and he didn't think he could deal, so he bailed. That's admirable "I guess"

I'm glad he was honest up front.

[shiney sue]

Yep ratter have him be up front ,then petend to be somethink he's not,oh
well we get to look at some handsome dudes here and don't have to
wash there socks. Sue

[SeamsLikeStitches]

Oh, that is one thing I forgot about men! Their socks! Puhhhhleeeeease!

For all their wonderful things... Great BBQed Ribs, the Oh so wonderful S e x ...

but those nasty smelly socks , can't they find a way to keep them in an odor proof container somewhere that just whooshes them away to a machine that immediately un bunches them, washes, matches them up, folds them, and puts them back in the drawer without us having to touch them?

I don't even mind washing their underwear, their dirty jeans, their t-shirts... just don't make me wash their socks! I grew up with four stinky smelly nasty brothers who had the worst feet in the Northern Hemisphere! Mens feet are GROSS!

I like almost everything else about men! Just not their socks! It's one of those things I was traumatized with as a child! Boys smelly socks! Brothers are evil!

[dahlek]

He had YOU do HIS wash?

Not worth keeping!

Besides whoever said we are definitely wheelchair bound? Not I, tho I've been told I should be, I refuse to stop and accept that option [unless I break a knee again ...that's short term].

's - j

[SeamsLikeStitches]

No, I didn't do his wash, just that when he stayed over, his socks smelled! I didn't like that smell in my bathroom! How do you deal with that? Without being "rude" ? He is a construction worker, and he wore his socks all day, so when they wear white socks, in their boots, they stink!

[Aussie99]

Originally Posted by SeamsLikeStitches

Well, I guess it was too good to be true...

I started dating a guy a few months ago, and he saw my first "episode" last week. It wasn't stress related or anything, just a rough week. When the cane came out of the closet, he got scared and decided to walk!

On Saturday night we went to the movies, everything was fine, we had a great time. Sunday morning we went to his daughters soccer game, then out to lunch. I noticed a little "distance" in his attitude. I asked about it. He said he was "concerned" about my PN and thought that maybe it was a little more than he was ready to handle.

In the beginning of the relationship, (when we decided to be "monogamous and serious") I told him about the PN, explained what it was and how it worked. He seemed pretty o.k. with it. Of course, he couldn't see the effects at that time. Just that I can't wear high heels and walk very fast.

Well, last week, when I wasn't able to go out with him when he wanted me to, and I had to get the cane out of the closet for a few days, it was a reality check for him. I needed extra sleep a few nights, I was feeling exhausted and felt my body just hitting a wall. I knew if I didn't get some rest I was going to be dragging for a while.

So, he packed up all his "overnight" things he had at my house on Sunday when he left and we decided we would no longer be "monogamous" and he would "call me" later.
Basically, he is too shallow and scared of what this might turn into and he doesn't want to have to take care of someone who might be an invalid in a few years!

This is the reality check! This is the scary part! Being single with a disease! When you finally find someone, and you do start to like them, what if you do get worse? What if you do become less mobile? Is it fair to ask them to stay with you? Is it fair to ask that person who barely knows you to "stick it out" through thick and thin to see if you will rebound?

Should I just accept the fact that I am going to be alone for the rest of my life? Who is going to want to be with someone who is disabled?
Why would someone want to start a relationship with someone who is eventually going to be disabled?

It doesn't matter how pretty your face is, if they have to pick your butt up from a wheel chair to put you in bed, how romantic is that? If they didn't love you "before" you were in that wheelchair, what's going to draw them to you after you are there?

Hi Seams,

Please do not be resolved to thinking that you eventually will end up in a wheelchair. That sort of thinking is detrimental to your recovery. And believe me you are recovering. You seem to be doing heaps better than your very early posts. It just takes much longer with PN because PN is a symptom,and you must find the cause. I forget your testing, but I would definately look at food intolerances/gluten and vitamin deficiencies as best I can.

Also the unfortunate reality of life is weather we are married or single, there is still no guarantee that our significant others will stick it out through severe disablement. I know plenty of spouses that have taken off running when there partner became ill.

But with a positive mental attitude you can accomplish much,and just think that this guy was not the man for you. Life is not one big party. Just think that you were spared bigger dramas down the road,and that the right MAN for you is still out there.

PN does not have to lead to disability. When I first got PN, I was virtually disabled, could not walk, I was in pain 24/7 and my autonomic system was all over the place.

27 months later I am feeling stronger and better. I feel like a person with a new lease on life. Yes I have PN, yes I have a bad back with more PN, but I am a good person and have alot to offer, and so do you.

You have been through a great deal in your life and you have managed to pull through. This guy, was not the "MAN". Don't confuse a guy with a "MAN".