Re: Intimacy

[Guest guest]

Hi Margaret,

Your willingness to discuss intimacy & your relationship between your

husband & yourself are both very brave! I suspect that you both will retain

ways of capturing the intimacy, but you will also need to build ways of

sharing to compensate for simple things you both are losing. Just anything

that both of you like & can do together, or things each of you like that

are different that you can do in the same place & time.

Maybe movies become difficult, so possibly a video, etc. This is hard

stuff to confront, innovate, think out & do, and sooo important. But you

two already seem to have a head start.

Ken

08:21 AM 6/19/98 -0700, you wrote:

>

>

>Hi Everyone,

>

>Ray, I just finished reading your email " my condition is affecting her and

>our relationship " that is also happening in my marriage. My husband Ren has

>never complained, never asked, and I know it's as difficult for him as it is

>for me. Like you, there are times I cannot stand to be touched, we have

>even gone to single beds in the same bedroom for that reason, and as often

>as possible we cuddle together in one or the other of the beds, one thing in

>favor of single beds is that when we do sleep together you cuddle up nice

>and close simply so neither one falls out of bed ).

>

> " Pain is a pretty good deterrent to intimacy. " So is the pain medication I

>must take. I am on morphine and if I want any relieve I must take it

>consistently, the pain uses every bit of it up and in 5 yrs I have yet to

>experience a " high " from having taken it. It does something to my nerve

>endings though, this is hard to talk about, and I'm not sure if it is

>appropriate to be discussing it here on the list but maybe someone who is

>also on morphine can help. I haven't even talked to my doctor about it.

>

>Intimacy for Ren and I has really become difficult, there is no longer any

>spontaneity, it all has to be orchestrated. If I want to experience it to

>the fullest I must go off the morphine for 24 hrs, if I don't no matter what

>we do or how hard we try I am felt hanging, an orgasm and sexual release is

>impossible. I end up in tears, and Ren who has in the 32 yrs we have been

>married has always put my pleasure ahead of his is left feeling helpless.

>

>Ren never asks, he quietly waits for me. When the need for that special

>closeness becomes overwhelming I stop the morphine and endure the pain, and

>Ren injects the morphine immediately afterwards. Is there a better way? I

>love him so very much.

>

>

>Marg )

>mesenteric vascular insufficiency, chronic pancreatitis, severe

>malabsorption, paralytic ilius, non eater, g-tube

>doll@...

>

>

>------------------------------------------------------------------------

>

[Guest guest]

Ray,

It is with great distress that I see you and others going through the same

disruption in intimacy that played out so badly in my marriage. But it need

not in yours.

First, I do think it wise to question the elavil with your doctor. You are

very clear on its negative sides. In a Psych Center I worked at, I found

patients ditching elavil & some other drugs for just the same reasons.

Their choices were to be perhaps more impaired, but hold onto some of the

very special things in life.

It may be that use of a narcotic might allow you a more reasonable sexual

relationship with your wife. It might not be taken except when needed. The

elavil needs to be addressed specifically, because in addition to its

negative effect on sexual desire, it is powerfully sedating, and that too

both is lousy for you & lousy for any sex at all.

Quite a few books have been written on sex and disabilities, but I have not

kept up with them.

In the long run with infirmity & age, sex often recedes in importance in a

relationship, but it may not need to be so.

I truly appreciate your frustration & pain with this, having been there

myself & finding neither good answers at the time nor even the time, with

all the chaos, to even recognize the problems. But that is an extreme, and

I think by recognizing it, you at least make it possible for some solution

in the long run. This has to be shared in a relationship, but is so painful

to do.

Ken

At 12:18 PM 6/19/98 -0400, you wrote:

>

>

>Margaret,

>You must really love Ren. And it is obvious that he loves you. I know that

>my wife loves me, too, but the changes we have been going through are really

>taking a toll on our relationship. I am just not interested in sex. When

>having sex actually hurts, it kills the desire to want it. I've got to deal

>with that for her sake and because I love her.

>

>As to medications causing a loss of desire and response I've been there too.

>Elavil, for all its wonderful help in dealing with pain and normalizing

>sleep is an intimacy killer. It prevents you from having an orgasm.

>Combine that with other meds I was on that prevented physically being able

>to begin and you got a big problem. I've gone off all meds except Prevacid

>for my stomach. I'm trying to learn how to just deal with the pain without

>meds right now. If I stay busy, most days are okay. But when the fatigue

>hits, staying busy is impossible and the pain interrupts life and

>relationships.

>

>I'll pray for you and Ren. You pray for me and Chris.

>Thanks

>Ray in Virginia

>ICQ# 14278868

> Intimacy

>

>

>>

>>

>>Hi Everyone,

>>

>>Ray, I just finished reading your email " my condition is affecting her and

>>our relationship " that is also happening in my marriage. My husband Ren

>has

>>never complained, never asked, and I know it's as difficult for him as it

>is

>>for me. Like you, there are times I cannot stand to be touched, we have

>>even gone to single beds in the same bedroom for that reason, and as often

>>as possible we cuddle together in one or the other of the beds, one thing

>in

>>favor of single beds is that when we do sleep together you cuddle up nice

>>and close simply so neither one falls out of bed ).

>>

>> " Pain is a pretty good deterrent to intimacy. " So is the pain medication I

>>must take. I am on morphine and if I want any relieve I must take it

>>consistently, the pain uses every bit of it up and in 5 yrs I have yet to

>>experience a " high " from having taken it. It does something to my nerve

>>endings though, this is hard to talk about, and I'm not sure if it is

>>appropriate to be discussing it here on the list but maybe someone who is

>>also on morphine can help. I haven't even talked to my doctor about it.

>>

>>Intimacy for Ren and I has really become difficult, there is no longer any

>>spontaneity, it all has to be orchestrated. If I want to experience it to

>>the fullest I must go off the morphine for 24 hrs, if I don't no matter

>what

>>we do or how hard we try I am felt hanging, an orgasm and sexual release is

>>impossible. I end up in tears, and Ren who has in the 32 yrs we have been

>>married has always put my pleasure ahead of his is left feeling helpless.

>>

>>Ren never asks, he quietly waits for me. When the need for that special

>>closeness becomes overwhelming I stop the morphine and endure the pain, and

>>Ren injects the morphine immediately afterwards. Is there a better way? I

>>love him so very much.

>>

>>

>>Marg )

>>mesenteric vascular insufficiency, chronic pancreatitis, severe

>>malabsorption, paralytic ilius, non eater, g-tube

>>doll@...

>>

>>

>>------------------------------------------------------------------------

>>

[Guest guest]

Margaret,

You must really love Ren. And it is obvious that he loves you. I know that

my wife loves me, too, but the changes we have been going through are really

taking a toll on our relationship. I am just not interested in sex. When

having sex actually hurts, it kills the desire to want it. I've got to deal

with that for her sake and because I love her.

As to medications causing a loss of desire and response I've been there too.

Elavil, for all its wonderful help in dealing with pain and normalizing

sleep is an intimacy killer. It prevents you from having an orgasm.

Combine that with other meds I was on that prevented physically being able

to begin and you got a big problem. I've gone off all meds except Prevacid

for my stomach. I'm trying to learn how to just deal with the pain without

meds right now. If I stay busy, most days are okay. But when the fatigue

hits, staying busy is impossible and the pain interrupts life and

relationships.

I'll pray for you and Ren. You pray for me and Chris.

Thanks

Ray in Virginia

ICQ# 14278868

Intimacy

>

>

>Hi Everyone,

>

>Ray, I just finished reading your email " my condition is affecting her and

>our relationship " that is also happening in my marriage. My husband Ren

has

>never complained, never asked, and I know it's as difficult for him as it

is

>for me. Like you, there are times I cannot stand to be touched, we have

>even gone to single beds in the same bedroom for that reason, and as often

>as possible we cuddle together in one or the other of the beds, one thing

in

>favor of single beds is that when we do sleep together you cuddle up nice

>and close simply so neither one falls out of bed ).

>

> " Pain is a pretty good deterrent to intimacy. " So is the pain medication I

>must take. I am on morphine and if I want any relieve I must take it

>consistently, the pain uses every bit of it up and in 5 yrs I have yet to

>experience a " high " from having taken it. It does something to my nerve

>endings though, this is hard to talk about, and I'm not sure if it is

>appropriate to be discussing it here on the list but maybe someone who is

>also on morphine can help. I haven't even talked to my doctor about it.

>

>Intimacy for Ren and I has really become difficult, there is no longer any

>spontaneity, it all has to be orchestrated. If I want to experience it to

>the fullest I must go off the morphine for 24 hrs, if I don't no matter

what

>we do or how hard we try I am felt hanging, an orgasm and sexual release is

>impossible. I end up in tears, and Ren who has in the 32 yrs we have been

>married has always put my pleasure ahead of his is left feeling helpless.

>

>Ren never asks, he quietly waits for me. When the need for that special

>closeness becomes overwhelming I stop the morphine and endure the pain, and

>Ren injects the morphine immediately afterwards. Is there a better way? I

>love him so very much.

>

>

>Marg )

>mesenteric vascular insufficiency, chronic pancreatitis, severe

>malabsorption, paralytic ilius, non eater, g-tube

>doll@...

>

>

>------------------------------------------------------------------------

>

[Guest guest]

I, too, am on morphine for my pain and with my back I am severely limited

to " intimacy " as you have mentioned. We take morphine for pain because it

deadens the nerves and keeps us from feeling the pain. This is fine, as

far as pain is concerned; not so great where sexual intimacy is involved.

It seems you can't be that selective - Deadening only the nerves carrying

pain signals from my back to my brain would be nice, but it doesn't seem to

work that way, or at least I haven't found any other way around it.

My relationship with my husband, however, is not a good one. I guess he is

satisfied through a forced intimacy kind of way; my discomfort has never

been a major concern of his.

I do happen to know there are books available to help couples in your

situation have a fulfilling sexual life - it is not something you should

have to give up if you don't want to. I receive a magazine called " Accent

on Living " which has a book list including information on sexuality and

disability matters. You can reach them by writing: Accent on Living, P.O.

Box 700, Bloomington, IL 61702, or by calling (309)378-2961 and they even

have an e-mail number: acntlvng@...

As with all things, over time intimacy issues exist for every long-standing

relationship - even in those where disability is not an issue. Just look

at the frenzy over Viagra! As we age and our bodies naturally change, we

all end up making compromises, auditioning new positions. As much as you

and your husband still care for each other there should be no reason you

won't be able to continue a happily intimate life together - Maybe it won't

be the same as it was thirty-some years ago, it might actually end up being

something better.

Peggy M.

At 08:21 AM 6/19/98 -0700, you wrote:

>

>

>Hi Everyone,

>

>Ray, I just finished reading your email " my condition is affecting her and

>our relationship " that is also happening in my marriage. My husband Ren has

[Guest guest]

Hi Margaret;

If I may be so bold, I'd like to say a thing or two.

What you describe is something I am deeply familiar with. I doubt I would be

very wrong if I said that just about any strong pain killer will produce the

effects you describe. When I was on high doses of Percocet and then

Morphine, people would ask me how I felt. They would often point out the

stuff was obviously working as I appeared to be pain-free. What they didn't

understand is that I was never pain-free. I described the feeling as a

different state of awareness. By this I mean that I still felt all the pain

and discomfort, I just didn't give a damn. Given enough pain, I don't think

you can ever be pain-free. You just care more or less about it. In my case I

didn't care. I did however feel the added strain I would sometimes but

myself under if I forgot to take my meds on time and boy, did it hurt. The

medication relieved or diminished the sense of " feel " both physically and

mentally, including the drive and feel for intimacy.

and I have been married 24 years this year. We have a very open

marriage. We talk a lot and confide in each other. We have never had an

argument. Never. There have been a couple times when one or the other would

walk away to give a problem time to breath but we have never had a

face-to-face argument. It's always been as if we were two halves of

something and we needed to find one another to be complete. As trite as this

may sound, it's the truth.

The last time we were intimate was over 10 years ago. The last time, my back

went into such convulsions I ended up in bed for over a week. It was the

only time that my good doctor actually agreed to a week's worth of anything

stronger than what I usually take. Thinking back now on our time together

before things took a turn for the worst, she must miss the intimacy very

much but she never talks about it.

I also love my wife very much but I find I can't really approach the subject

anymore. It feels too much like a failure. Sometimes, watching TV or in a

group of friends, someone will say something like " someone got " it " last

night " or words to that effect and we invariably look at each other but not

a word is said. If I had to name one thing that really hurts me more than

anything, it would be the inability to even be able to talk about it. Every

time the word sex is mentioned in a context of intimacy, I feel like

crawling under a rock.

One of the normal side effects of morphine and all other opiates for that

matter (as well as alcohol), is a reduced sex drive. That is a documented

fact. Under other normal circumstances, I can usually deal with known side

effects. For example, opiates have a tendency to cause constipation. I can

talk about that. Under certain conditions, they cause memory loss. I can

talk about that too. I'm now at the point where accompanies me just

about everywhere I go because I " forget " where I am; like driving down the

highway and suddenly experiencing panic because I have no idea where I am or

where I'm going. I miss freeway exits I've known for years and take wrong

turns. I accept that and can talk about it. Not sex.

TV has evolved a lot in the last 20 years ( I said evolved, not necessarily

gotten better) and as a society, certain things are now allowed on public

airways which at one time were considered solely the realm of the bedroom.

That never really bothered me. Now, I find that as soon as a show or movie

gets a little " steamy " , I just walk away rather than stay in the same room

with . It's different if she's not there. Then I can watch. When she's

there, I feel such a sense of failure, I can't handle it. I make a conscious

effort to stay away from any such shows or movies in the same way you keep

your fingers away from a flame.

Is there a solution other than what you are doing? I don't know. I try to

compensate for my inability by being more attentive to her needs in the work

that she does (she is heavily involved with the Humane Society and other

non-profit community activities) by taking the time to listen to her and

offering my services such as writing computer programs for her that help her

and her groups do the things they want to do. I listen to her plans for the

garden and look at the many plants she's working on (that's the green leafy

things that I'm told need watering once in a while when she's away!).It's

not a replacement for my failure to be intimate but it helps me cope. You

see, it only hurts when you think about it. You can only think of so many

things at a time and talking about geraniums, peas, carrots and radishes

doesn't leave much room for thinking about sex at the same time.

I'm very sorry to say that I have no golden answer for you. I think we all

here realize by now that there are no magic pills for what ails us, but if

it's even a small comfort to you, rest assured, you're not alone. There is a

bond that is formed between people who have something in common. We share

something others often don't even understand. What we experience affects

every part of our being; our mind, our body in all it's parts and functions

(even stupid things like not being able to sneeze without hanging on to a

table or counter top for me), in some even their faith. As I've stated in a

previous post, I'm not the religious type but I do admire someone who has

what I consider blind faith in the intangible and I see it as a terrible

tragedy to lose something like that. It must be like losing the ability to

dream, to have hope for the future.

Whoa! that was a dark cloud! I have to start thinking about something else

before everybody gets depressed!

It's weird to re-read what I just typed. I've actually never talked about

this to anyone. There is a little box inside my head with all the things I

never mention or share. Now a little piece got out. I must admit it gives me

a measure of comfort. I just realized for the first time that I'm not alone

either and it's kind of a relief. I must admit the anonymity of the internet

helps. I don't think I could have a face to face conversation about this. I

started this message with a view to comfort you but now I owe you some

thanks. Thank you.

If others are uncomfortable with the subject of intimacy, please let us know

and we can take this off the list although in my case I think I've exhausted

my thoughts on the matter. I'm still here though for anyone who feels the

need to bounce ideas of someone else.

Have a good day Margaret and thanks again.

Mike

> Intimacy

>

>

>

>

> Hi Everyone,

>

> Ray, I just finished reading your email " my condition is affecting her and

snip snip

[Guest guest]

Hi Peggy;

I've just fired off a note to Margaret on the same topic. I was reading your

post and noticed something. You say:

>We take morphine for pain because it

> deadens the nerves and keeps us from feeling the pain. This is fine, as

> far as pain is concerned; not so great where sexual intimacy is involved.

> It seems you can't be that selective - Deadening only the nerves carrying

> pain signals from my back to my brain would be nice, but it

> doesn't seem to

> work that way, or at least I haven't found any other way around it.

That's not quite true. There is a way that the morphine can get only at the

pain and nothing else. I found out about this a long time ago and have been

actively pushing to have the procedure here. The way it works is this: a

small tube is inserted to the painful area (a disc, vertebrae, whatever). To

this tube, a small pump is connected which you carry on your belt. It

dispenses the morphine directly to the pain. Once a week/month/whatever, the

clinic refills the pump. The amount administered is minute compared to what

we have to take orally or by regular injection because the drug doesn't have

to travel throughout your body which somehow dilutes it. Perhaps Ray can

confirm this with doctor Chris. The procedure as far as I know has been

practiced in Europe for over 20 years with great success. If memory serves,

France seems to come to mind.

My problem is that the procedure is not available in Canada. In my opinion,

we Canadians are very slow in accepting foreign ideas in medicine. I

sometimes wonder if the fact that morphine manufacturers could see the need

for their product cut to less than 10% has any influence...but I digress.

Politics couldn't possibly have an effect in this...right?

If I had the money, I'd be over there like a shot. Anyway, Ray...Yo Ray ?

Can you verify any of this ?

Mike

> Re: Intimacy

>

>

>

>

[Guest guest]

Mike,

No, I don't have a dish fetish, but I sometimes become a neat freak.

Anyway, doing the dishes gave me something to do at 2:30 AM.

Ray--I'm back!

Re: Intimacy

>

>

>

>> Sometimes I go to

>> bed with her, wait until she is asleep, and then get back up. I

>> was loading

>> the dishwasher at 2:30 AM this morning because I was in so much

>> discomfort.

>

>

>What a cop out ! Come on Ray, admit it, you have a disk fetish, don't you ?

>Don't try to hide your bad habits from us, we know better ! We can see

right

>through you !

>

>See you when you get back.

>

>

>Mike

>

>

>------------------------------------------------------------------------

>

[Guest guest]

Hi,

This is to everyone who shared their innerselves and their own struggles

with intimacy. I realize I am very late responding to your letters on the

subject that I started. I have been so darn sick that writing emails was

too much of an effort, I just kept filling all the mail I received from the

group knowing that sooner or later I would be able to respond.

I wrote in response to (Pain is a pretty good deterrent to intimacy.) " So

is the pain medication I must take. I am on morphine and if I want any

relieve I must take it consistently, the pain uses every bit of it up and in

5 yrs I have yet to experience a " high " from having taken it. It does

something to my nerve endings though, this is hard to talk about, and I'm

not sure if it is appropriate to be discussing it here on the list but maybe

someone who is also on morphine can help. I haven't even talked to my

doctor about it. "

Vicky you said, " If you are this shy about sharing personal matters, then I

highly suggest finding a good therapist with whom you feel comfortable (i.e.

a woman therapist for a woman maybe). "

I can talk about it, and my husband and I have many, many times. I was

concerned that I might be crossing some boundary on acceptable topics being

new to the list. The " hard part " is the hurt I feel in my heart everytime,

it's the grief I feel over the lost of a very precious gift Ren and I had

been given. For 32 yrs we never " made love " we gave it willing and happily

to each other; it wasn't hot and heavy, slam bam thank you Mam, none of

that. It was gentle and slow, the joining of two bodies and two souls. It

was beautiful and I miss it so very much. I long to be in that place once

again where the world receded and the feelings coursing through my body was

all that existed.

I am still his right side and he my left, we are still each others best

friend and confident... I am no longer his lover, the way I want to be.

That's the part I haven't even talked to my doctor about. I can say it

here, because I can type even while I'm all choked up and you can't see the

tears falling on the keyboard.

I'm thankful that the morphine allows me to still be intimate with Ren and I

do share in his pleasure and contentment on an emotional level. It took

many nights talking in the dark to convince him it was okay, that I gave

him permission to go ahead and climax, that in all the years I could

probably count on one hand the number of times I didn't have an orgasm. He

had always put my pleasure before his. Without the morphine the pain would

not allow this.

At the same time I HATE it, I hate the morphine for stripping me bare. I

still have a body that responds to his touch with all the anticipation of

the past, that still eagerly climbs the same mountain but upon reaching the

summit, is incapable of enjoying neither the view nor the descent. I

literally walk around the house at times craving sexual release, this must

make me sound like some overly sexed nut. Somehow I have to figure out how

to come to some balance so the pain can be at a tolerable level and allow

for sexual release. I guess I am going to have to have this talk with my

doctor, maybe he can help.

Thank you for all your support and for allowing me to write this. God

bless you.

Love,

Marg )

mesenteric vascular insufficiency, chronic pancreatitis, severe

malabsorption, paralytic ilius, non eater, g-tube

doll@...