Peripheral Pain from the PN: Loss of Relationship
 

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?

Tough
 

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..:hug:

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

Sorry
 

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

http://bestsmileys.com/hugging/4.gif

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. :hug: :hug:

Mel

I agree with Billye, at least he was honest up front...
 

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.

I am to
 

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. :D Sue

Thanks for the reminder about the stinky socks!
 

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

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

but those nasty smelly socks , :thud: 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?:Poke:

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! :icon_twisted: Brothers are evil!

You mean?
 

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].

:hug: 's - j

I didn't do his wash, just that his socks smelled!
 

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!

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".;)

Re: Smelly Socks
 

Seams:

There is an item on the market called FEBREZE.

Buy it, you can spray it on anything and everything smells clean and fresh.

Use it on the guy's socks.

It's fabulous!!!

Mel

Mel
 

I t does work well,and i think it would be funny if Terri sprayed the guys feet
it would just show not everybody is perfect like this dude thought he
was. And i know a lot of people who date and are in wheelchairs,i do
when i need to, because i'm :cool: Sue, Bob is in the hospital he
went to get his ESI L 4-5 now he can't move his legs,hope he's better
tomorow. :( it's hard for him to keep the girls apart,and he needs his rest.

just a thought...
 

due to my spine/back issues I went through periods of extreme disability. There were many times when I was not able to walk/move. I at one point was almost hunched over all the time from muscle spasms/contortions.

Very often I wondered "what the heck I will end up as"? I worried about becoming disabled.

My mum then said "you know Liz Taylor don't you"? I said "yeah"?

She said "One week Liz is disabled, and the other week she's not. One week she's in a wheelchair and the other week she's getting married. One week she's getting a hip replacement and the next week she's in the Bahamas. One day she's bald and the next time you see her she has her signature big hair.
You just never know what life is going to bring, and sometimes you just have to live in the present and take it as it comes."

That philosophy and the imagery of Liz has somehow carried me through from that day to this,and everytime I am feeling desperate, I think of LIZ!! And sometimes I have a bit of a laugh because I know exactly what mum is talking about.

None of us know what the future holds anymore than than we did before we got PN. So I guess there's not much sense in worrying for things that might occur.

Hang in there Seams--there is someone out there for both of us.:hug:

Does that mean--
 

--the two of you would have to share him? How would that work? :D

SeamsLike.....,
There are people out there who can love a person for who she is - not what the disability is. My son is wheelchair bound for life, and had a shallow girlfriend (and mother of his 3 yo son). When the accident happened (last Sept) she was all lovey and 'devoted' (kinda). Lately she's been seeing other men (or at least 1 other one).
He's not giving up. There are so many incidents of wheelchair invalids finding a decent significant other that he knows he'll find someone that loves him for him and sees past the wheelchair.
That said, you aren't necessarily destined to be chair bound.
You may need a cane, maybe even a walker, possible one of those little scooter things to go to all the amusement parks and walks on the boardwalk and everything that all of us want to do.
Don't get down on yourself. Gloom and Doom is not in the cards.
You had one experience and the guy was up-front with it.
Be thankful. Try even to maintain some sort of friendship if possible.
But stop trying so hard to hook-up with someone. It'll happen.
Usually its when you aren't looking for it.
Remember stress is a big enemy.
Work on that. Not on men.

First I'm sorry and can relate to this even before the pn with my anorexia where I lost a lot of relationships. I understand its hard for others to watch people struggle but to me a true friend or sig other is there through the good and bad. In life we never know what may happen and I think others need to think of something may happen to them and how would they feel left alone. This issue and my past has really showd me who the true people are. Also that for myself hiding my feelings to protect others only harms myself. You have to hold to hope and in my recovery I have met amazing people that I wouldn't trade for the world. You never know who you may meet through a support group,coffee house,so on. Also we forget others have issues and who knows what this brought up for that guy or if he is just looking for all fun then you deserve better. As for the outlook of illness, I know for me I have ups and downs in my mood but trying to stay in the day and take 1 day at a time. Take care and your not alone.

YOU GUYS ROCK! Thanks for the reality check!
 

We all have to have our one day Pity Parties... and mine is over!

Thanks for coming and bringing the great gifts! :circlelove:

I especially liked the one from Bob about his son. I have read all the posts about him and feel like I know that kid. He knows he'll find someone that loves him for him ;)

Aussie, Thank you for the story about Liz Taylor, that is a good one! I've been told many times I have eyes like her, so that is a good reminder! If "that" woman can keep coming back, why can't I? Live in the moment! What a great gift to give someone! :cool:

And Deb, If I find one good enough, I'll share him with you! You would do the same for me I'm sure! ...... Wouldn't you? .... Deb? Oh,,, Deb? Are you there? :hug:

Two Things
 

The first is....my younger sister had bone cancer as a child and had her leg amputated at 13. If that wasn't enough, she ended up with breast cancer about 6 years ago. 15 years ago, she married a wonderful man who is very loving and supportive. Her disability did not get in the way of her finding a man that could love her for who she is....secondly.....As a man...I do NOT have smelly socks....or feet!!!! I'm sure we could find just as many stinky socks/feet attached to the female species of the world. :)

Who ever gets the next guy just make sure he has a twin, no sharing that way :D :D

Yup, I'll share with you. But lets try and find a guy who doesn't have stinky feet, or at least one that does laundry--NAKED!!!!:wink:

:hug: Deb

Stich
 

Now that's a keeper Deb,and would be fun to watch,i think you
2 are so sweet to share. :eek: Sue

:circlelove: Of course. BUT, can one man handle both of us, we are pretty special!!!!!:D

Hey
 

Come on guys.....stand up to this stinky feet thing. It's discrimination!:)

I will! but i have to do a stinky sock wash first.

Hello Seams...
 

Around my house the problem of stinky socks has been solved by my faithful canine companion. He luvs em!! They never make it to the laundry. They are under the sofa ,chairs, and even his fortress of solitude ..the bed. I think he considers them an aphrodisiac. So...problem solved. Have a good day!!

I admit my socks--when I wear them--are not pleasant--
 

--especially after a few hours on a summer day, but this is hardly a male-only situation.

My wife is an ultramarathon runner, and most of her socks can stand up by themselves. (And I'm the one who does the laundry.)

OOOOOOOOOO Joe! Hey Seams, how far are you from Long Island? Joe says he can handle us and he doesn't live very far from me:D . Of course, he does have to wash his socks first!:wink:

Well, I guess you win that pair of socks!
 

I'm in California! :cool:

Yes stinky socks and the like are not gender exclusive...
 

but larger occurences are always found in the male of the species!

I think this is a well known scientific fact??:D

No stinky feet here either :D , this gender thing is not fair ;) , how many females wear socks all day anyway, maybe at bed time on a very cold winters night, but that's all i know of :)
If a person knows that they have stinky feet and are going to rock up to their girlfriends place after work, you would think at least they would bring another change of socks and after work, give their feet a bit of a wash and put the new socks and casuals on before coming over, one of my mates works on building sites and he does this everyday before he comes home with a short detour to the pub first.:)

A real man doesn't bail out of a relationship just because of their partners illness, crikey, if he's fair dinkum, he should be more loving and attentive than anything, any healthy person could have an accident at anytime that leaves them with a permanent disability, if their partner nicks off because of this, then there not worth having in the first place.
Your the winner Terri and he's the looser.
all the best
Brian :)

I agree with Brian,and please also let me translate
 

Fair Dinkum (Australian)= "for real"(American)

So this bloak was definately not fair dinkum.

Honest Aussie and Glenn--I would love a man with stinky feet, as long as he treated me right. You know we were just teasing about the stinky feet.

My uncle always told me the cure for stinky feet is to put mouthwash on them. He says feet stink because of a infection and the mouthwash stops that. He swears by it. I have two sons that have the stinkiest feet in the world, always said there isn't a can of aerosal in the world big enough for their feet!!!:wink: My feet never stink, yet you are correct, my feet are out of shoes as much as possible. I hate shoes!!!

Hi Terri:

I could hardly believe what you wrote about your boyfriend dumping you like that. I am really sorry, I know that must have hurt terribly.

I guess I agree that it was probably good that he was honest about his feelings upfront, but I am having a hard time feeling very charitable towards someone who could be so mean. And that was just plain mean. As I understand it, he knew you were sick going into the relationship, but I guess that there must be some kind of dividing line with "sick" and your "sick" must be on the wrong side or something... Mean. Mean. Mean....

I hope that someone comes along for you who can overlook the health problems you are experiencing. You sound like such a nice person and I know you would have much love to offer someone who would share your life, the good and even the bad.

I think of Mel and Alan and how they are both suffering from health problems and are very devoted to one another. I am also fortunate in that my husband is very supportive, despite my problems and the fact they make me so irritable and crabby SO MUCH of the time. I know there are probably others on this board, who also have supportive loved ones. I hope that you will find someone too who will share your life with you and want to make things easier on you because they love you.

I am sorry I have not written any more movie parts, I had not forgotten you and wanted to cheer you up with one-just have had a rough time lately, and haven't felt like doing too much...

Much love,
Cathie