My hat is off to you for having the gumption to bring this sensitive topic into the discussion board. It is a difficult topic to talk about, but it can be the source of so much unhappiness for us.

I recommend Peggy Munson's book "Stricken", Chapter 28 for some frank talk on this topic. It certainly helped my peace of mind to read it and realize that it was not a failing on my part when my relationships came apart. It was the illness once again stealing chunks out of my life. I would rather not revisit the unfortunate details of those times as a topic for discussion...I hope you will all understand that.

Suffice to say that for some of us single is all we can manage.

Gosh I really understand what you mean about not wanting to be touched/cuddled etc. I go through periods of that and it is always at its worst when I am in a lot of pain/aching or extremely tired. I remember my other half being really frustrated with me because if I went to bed (especially after a busy day), I just wanted to lie there, sleep/rest and not be snuggled - because sometimes even just being lightly touched felt so painful. Plus, I think that any form of activity (even if it seems quite passive) can be very tiring and one that is connected with touch and intimate feelings etc., is even more so because it is linked to emotional as well as physical energy and output.

I think it is very hard for people who have not experienced the type and level of physical pain and discomfort that we endure, to understand what we mean. To look at me, you would not know I am in the amount of pain that I am, so when explaining to my other half, it almost seemed a bit hysterical/ridiculous. My other half has been very understanding though and has tried to see things from my point of view - sometimes I have resorted to analogies to explain what I mean... and he tends to get that - but we are not married, do not live together and so I have no idea how I would manage if we were living under the same roof. I think that there has been and would be some compromise on my part, but I also expect and receive some the other way around.

I do wonder if sometimes there are no solutions to some of our situations.

You said that your husband and you have the same conversation over and over about it - does he understand at all? Does he offer or do you offer any compromise? Is there a way that you could find a little time each week to be physical with each other without it draining you or do you have no desire to be intimate with him at all?

Thank you so much for sharing something that is so personal and helping me know that I am not alone.

As with most intimate relationships the problems are usually far more complex than can be addressed on a message board. Especially a relationship that is over 27 years long. I appreciate your questions and of course they make me think about what it is I really want. My first response is that I really want to be left alone, but your question about compromise is the question that I find myself trying to avoid. Life with CFS is a life of compromise and it's very selfish I know, but I feel tired of compromising when it comes to my body. Does that make sense? I feel like I have to compromise what I eat, how I can exercise, when and for how long I can be away from home, associations with friends, and on and on.

I know a lot of young mothers who are worn out from taking care of kids all day and feel like they don't have anything left at the end of the day to give, give, give anymore. Perhaps it's something like that. Our most important relationships "should" come first and our desires and selflessness "should" be most evident in that which is most important to us. However.........I'm just plain tired. What a lousy excuse. But at least something that people on this site can understand.

Good advice to take a few moments to try to be more caring. And, also a good point about understanding how this illness is basically a third party in our relationships ("stealing chunks of our lives"). I so much appreciate your comments. thank you.

Just seen your message, wow.. looked like something I would write and say about my relationship with my husband, he is a very loving, caring, helping man. He understands my pain and tiredness, but I know it is frustrating for him and that it can be so hard to deal with someone always in pain or feeling so bad all the time. Like you said it hurts to touch or push against your body, and I also have intersistial cystitis, a chronic bladder problem. I feel bad about not being the wife I should be alot. I have to admit here lately I am too tired to care as much. Thank God my husband seems to understand and never pushes me to do what I am unable to do.. I have more problems with him wanting to go out places or shopping sometimes, and I can't handle that very well sometimes, when I can I go. Believe it or not, sometimes I am too tried or hurt too bad to even want to go to the doctor.lol. the least thing I push myself to do, I pay dearly for it with pain and been so wiped out and tired. Thanks for bringing this subject up, really feels good to be able to talk this out in the open.

Kjfe -

You said: "Life with CFS is a life of compromise and it's very selfish I know, but I feel tired of compromising when it comes to my body. Does that make sense?"

I completely understand what you are saying here and it does make perfect sense. CFS takes away both power and control - so that it feels as if we have no power over our lives (because we are not well enough to live a normal life) and no control over our bodies (which are doing their own thing and causing the lack of power). Both of these things are very important in life because they are what helps us to feel that we have choice. Having choice creates feelings of satisfaction, joy, wellbeing etc. Strangely enough I realised the importance of choice and control when I started to lose my hair and suddenly I had no control and was not able to choose how I looked (as in what hair style I had). It felt BAD!

It does seem like, from what you are saying, that the issue of being intimate with your husband and having the closeness of touch etc., is not just related to the physical aspect of it - e.g. finding the sensation uncomfortable, painful, exhausting - but is also related to a more generalised feeling that you have about your life with CFS and a lack of control over your situation.

Strangely enough, we still have choice and power - you have the choice to not be intimate with your husband and in a way that is a form of power because perhaps you are controlling something he wants?

Sometimes I think that there are ways of compromising without it feeling like a complete compromise on the part of the CFSer. For example, making a little time for closeness... whether that be making the concious choice and effort to sit down with a tea/coffee/juice for a chat by yourselves or sitting together holding hands watching tv or a movie. Both of these things create closeness, but probably feel a lot less draining than being physically intimate. Just making the effort to take time for him, will make him feel special and this helps to re-cement the bond the two of you have. Plus, I think it is better and easier to start off with small 'gestures' than to try and dive in at the deeper end of things and end up feeling uncomfortable, putt off and exhausted. I am not the most tactile of people and I know that after a period of spending a lot of time by myself, I need to gradually reconnect with my other half and build up to feeling comfortable etc.

Wow. I always get a little teary eyed when someone on here says they know how I feel and it is sincere and they can corroborate with an example from their own life so I know just how real their words are.

It really is going to take my getting up the gumption to start using words when my head and body feel too tired to explain one more time how I feel and the why's of my behavior. I do need to let my husband know more often that I appreciate him. How can any of us expect to know how to navigate the world between the sick and the healthy? It's a strange transition and one we constantly shift between every day.

Your comments have truly helped. Thank you all.

You have written a very sensitive and compassionate post. While I am alone and at times do LONG for a husband I know that the intimacy part would probably be well .... problematic.

Good luck to you.

I worked up the nerve to talk a little about intimacy issues, which are a really, really touchy topic for me.

In the chapter in Peggy Munson's book "Stricken" on intimacy issues with ME, the authors note that many couples either severely limit intimacy or avoid sexual activity entirely. This is due to many factors, but mainly it was because it just makes you very ill for some time after.

My last real relationship did not work because I kept getting sick after having sex, and I would not want to do it anymore until I recovered. Partners interpret this as a loss of interest, and I had a lot of relationships go all to pieces over this. I was not diagnosed at the time. I pretty much lost all my relationships because of my ME. Facial agnosia, not recognizing a person by their face, was like a torpedo going off in one relationship, that one really hurt when it went sour. It still hurts.

But I have no ill will toward my ex-girlfriends, I just miss them. After all how would you feel if your love interest kept failing to recognize you? Some people might find that situation amusing, but I certainly do not.

In the article in the book, which is actually a collection of essays rather than one long book, the authors said that some couples choose to have sex anyway, even if it makes them miserable for a week or so from the ME. This could also be difficult for a partner who does not have the disease, I would think, to have to do without it most of the time.

Anyway, I hope this helps someone who reads it. It's a bad combination to have a normal desire for intimacy and be fully capable of having sex, yet not have the physical ability to maintain a relationship. It hurts a lot. But it is not our fault, we can't help being who we are. I wish people could just accept us for who we are, but I guess that's asking too much of them. We are very strange.

Richie

Thank you so much for sharing and being so open with us. I really do appreciate it and I am sure others will too.

This topic is very sensitive for all of us, but it is one which I believe should not be overlooked. Sex, intimacy and physical touch are all such a big part of a relationship that being unable to fulfil the 'requirements' in a relationship is very hard and can lead to this feeling that it is 'yet another' thing that we are not 'normal' in. Such experiences just add to an often already present feeling of guilt, shame, hurt and frustration etc., so being able to discuss this in an open and adult manner is truly emotionally liberating for some of us.

Vicky

I have a small window of energy during the day and it seems like the evening comes and the headache, body ache, just-trying-to-hang-on-feeling comes and I haven't the energy to focus on communication. Every day I think I will try to communicate my feelings but every day is another day of fatigue.

Tonight I had that feeling AGAIN where I just thought, "I'm done with this. I can't live with this illness anymore. I'm so tired of being tired. This isn't life." But it is life. And, we keep living. The simple thought of trying to have a conversation when I'm knocked out with fatigue feels like an impossible task. It's especially difficult when these days add up and pile on top of one another. That's how it has felt for a long time now.

Intimacy is just something that I seem to easily live without and I wonder what is wrong with me. Yesterday my mother-in-law was talking about her worry list and I asked her if her parents or grandparents were worriers. I said I worry because it's genetic - my grandma was a worry wart (that's what we used to call people who worried about everything). My mother-in-law said my father-in-law always told her to quit worrying and she finally told him one time to "let me have my personality". Those words keep ringing in my head: "let me have my personality." That's how I feel about my not wanting to worry about being intimate when I'm so tired..."let me have my survival skills". I feel like I'm doing the best I can to hold on and get through each day.

((hugs))

I can completely understand what you mean about the energy window and the feelings you have the rest of the day. It all seems so daunting and I feel like you are not only worrying, but putting a certain amount of pressure on yourself to 'perform' (e.g. to have that conversation), which is only increasing your stress levels.

My dad is a worrier and his mum (my grandma) was a terrible one too... so I know where I get my worrying tendencies from. Having said that, I fight those tendencies all the time, as I do not feel they have to be a part of me and I know I can get them under control, but it does require a lot of work and that can be hard when you have little energy.

Is your husband free from work on weekends? Can you not take the opportunity at the weekend to speak to him during the day when you have your window of energy? Do you think a part of you actually doesn't want to communicate with him about the intimacy issues because you feel that it will open up a can of worms or leave you feeling more vulnerable?

I am one of those people who can live without also... I think its partly my personality and partly because of the health issues. I think that because I don't have the longing or great desire to have intimacy, I find it very easy to not go down that road! Also, it is easy to feel resentful that the energy spent on being intimate or physically loving someone could be spent on other things we feel we 'really' need to do, whereas, it is easy to put the intimacy/physical love side of things in the box of 'optional' rather than 'compulsory'.

Vicky,
Exactly. Thank you for your insights. I appreciate your compassion and also appreciate that you add a little assignment or homework. You will be a great counselor. Wait, actually you already are a good counselor even though you may not have a license.

I think most people just want to feel understood and that their feelings are valid and important. We also need encouragement to step into our fears at times in order to keep living and growing as individuals.

Just having this topic on my mind and knowing there are others who feel as I do will hopefully help me find the courage I need to talk more openly about it.

Kjfe

Thank you for your kind words.

I agree - we want and need validation. I think that knowing others are able to identify with us in this respect, is very empowering as this knowledge lessens the feelings of isolation and (at the risk of sounding offensive) abnormality. By abnormality, I mean that CFS tends to strip us of the feeling that we 'fit in' and in the intimacy respect, there is a feeling that we are not fulfiling the 'normal' function. It is damaging to our emotional health and self-esteem to feel like that and to realise that, in our current state, what we are feeling is 'normal' for us is really helpful.

I also agree that it helps to step outside our comfort zone and challenge ourselves. Even with CFS, we can progress on our journey through life and discover positive things about ourselves - such as strength of character that we did not know we had.

You will find the courage, when you are ready. :o)