Marriage

[dawn]

Hi,

I was lying in bed last night looking at my husband asleep and realize how far we have drifted apart.

When I was functional and "had a life" things were so different. He is faithful and caring but I know

he is as sick of this illness as I am. I feel guilty that I have no desire to be intimate with him. He is

my caretaker and I find it really depressing. He has become my safety net and the only one who truly

understands how sick I feel.

I was always the one who cared for everyone and with the shoe on the other foot I am having such

a struggle accepting it.

How do you all maintain a relationship when you are so dependent on your partner?

My friends are understaanding and supportive but I always feel uncomfortable being sick around them.

I guess I feel embarrassed being sick. Does that make sense?

Dawn

[Guest tearose]

Oh sweetie, I understand. I think it is partly cause when we have been together for so long, our love relationship becomes like an old familiar sweater. It is tattered but it fits like a glove in all the right places and it is familiar. You are also coming into your "own" independent age of womanhood. (just like me but I will only admit to being 37...again) We come to realize that we can actually do okay without a partner but here they are. We have a history, we have a working relationship...but where is the fire in our passion? My guy has been snoring so much lately I can't stand it!!! But he too has been "carrying and caring" for me through thick and thin.

So, I can't offer you a direct answer, but I will brainstorm with you. How does that sound?

I think if you and I come up with a loving thing to do for ourselves and first validate that we are okay even though we are "slightly irregular" we will feel good and then be able to feel good about our hubby again. You know that saying that we have to love ourselves first. I believe this.

with you in spirit, tearose

[Ernie]

Hi,

I understand. I used to feel very guilty of fainting but now I have realised that I am physically sick and beside doing my best not to go behond my limits I cannot do much to stop the fainting.

[Dawg Tired]

When Hubby and I got married I was the caregiver because he had a head injury. Then, about 3 years into it I got sick and had to quit working.

I was so fortunate that he has been able to step up and do the caretaking. Due to his head injury and medications we are rarely intimate. Sometimes I do miss that aspect but I am usually too tired anyway. Roomate?? Well, maybe... But I count my blessings everyday that we get along and don't fuss and fight with each other.

[JanetM]

Oh Pet I know just how you feel.

Their is nothing intimate about our relationship any more. I feel I am such a burden now. He is an incredible dad and works hard all day to support us all. But I do feel I get no emotional support. Other than how are you today? and I get so sad when the answer is almost always the same! I don't feel he has ever done enough or read enough to understand this condition although sometimes I wonder if he is scared to. We have been together since the age of 15, we have grown up together.

He is great at the practical stuff like the housework but sometimes I would rather have a hug than a clean floor. Isn't it sad how much this condition has taken from us all.

My very best wishes to you and sending you a hug. x

[taylortotmom]

Janet, your reply made me a little sad. But, one thing we need to remember is men oftentimes have a hard time dealing with things thet can't control such as illness. Oftentimes, the way they show initmacy and love during these times is through practical acts such as cleaning. They may not can make you better but the kitchen floor is going to be spotless. Does this make sense?

Also, men do need intimacy and physical contact and may feel bad about asking you. Sometimes, they are afraid of hurting us physically when we are so ill. I spend every night hooked up to an iv. Yet, my husband and I still have a physical relationship. Not out of duty or obligation but because we have learned to work around just about anything, and we're still young so the fires still burn! But, that doesn't mean we don't have rough spots because we certainly do but the illness is just a part of our lives (albeit a big part at time) but it does not control our relationship.

It's early in the morning and I'm sorry if this is rambling. I'm not really giving any advice other to say I understand the sadness and frustration the disease brings to our marriages but there is a way to maintain a rewarding marriage despite the illness.

Carmen

[Be Still]

*sigh*

If you haven?t read the article here, on careGIVING (not careTAKING), it?s helpful. http://www.ndrf.org/DavidLevyPres.htm A quote from the article:

?Now to the issue of caregivers, care receivers and intimacy. A delicate subject, one that underlies? ?normal? healthy relationships and one that is greatly imposed upon by Dysautonomia. . . .?

It tackles the ?big three: love, intimacy and sex.? Not only does it give us a peek into our SO?s world, but it also offers comfort and suggestions.

I agree that going from being caregiver to being care receiver is a huge hurdle for a mother. Some of us even have to receive care from our children, as is pointed out in the Caregiving section of the NDRF handbook.

http://www.ndrf.org/NDRF%20Patient%20Handb...B_pp251-260.PDF

The handbook also makes a point that ?Spousal caregiving by men can be difficult, because men are not nurturers.? (But, they can evolve! They will need lots of encouragement to do so.) The book makes another point about caregiving with Dysautonomia, we don?t look sick, and it?s not short term.

Dysautonomia, the handbook further points out, is ?different.? Many things are different: ?school, social life, relationships, future goals, responsibilities, intimacy, work issues, and the entire family structure.?

Perhaps, an intimate relationship could use some spice, see this thread for do-able ideas (or post others!)

http://dinet.ipbhost.com/index.php?showtopic=5448&hl= Otherwise, consider depression may be a factor, on either side, and seek assistance. Dr. Grubb recommends counseling (I believe for all of his Dysautonomia patients) with someone skilled in chronic illness. Couples counseling can provide considerable support.

?Normal? stuff like mid-life crisis (or even mid-life reorientation) will still happen to us and, sometimes especially, with men (who can be just as disenfranchised in today?s society as women have been in the past.)

?Normal? long-term relationships go through a stage of dissatisfaction. One theory of relationships maintains that this is the make-it or break-it stage. http://www.imago.com.au/WhatIsImago.php

Three stages of relationship:

1) Romantic Love: An altered state of consciousness

2) The Power Struggle: Sleeping with the enemy

3) The Conscious Relationship: Break up or breakthrough?

http://www.imagohealing.com/relationships_...ine_article.htm

So, now can be a time of positive change, it doesn?t all have to dissolve. Yes, chronic illness is making it far more complicated, but not impossible, and many need assistance to get past this stage. One way to look at it, is this ?dawn?ing awareness is a step towards your best relationship ever.

[MightyMouse]

This is such a difficult topic for many--myself included. I totally understand where you're coming from and I go through phases of acceptance of the changes that have happened in my personal life, and then other times when I feel like I'm not able to contribute my fair share to our relationship at home.

All I can say is that it's gotten somewhat easier as the years have passed. We have found more ways to be close that don't necessarily include sexual contact. I hope that you and your husband are able to find your way to a place that you both feel good about.

Nina