Struggling with Loneliness in Marriage

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I've been married for 34 years, and I'd say we have a pretty strong marriage. I'm almost 100% housebound and have quite a severe case of ME/CFS. My husband retired a year ago, and gradually seems gone more and more of the time. He's a musician, and goes to music festivals and jams, in addition to social gatherings with friends. The other day he went to Universal Studios for most of the day. I feel like I'm between a rock and a hard place. On one hand, I don't want to even try to restrict his times away from home. After all, just because I'm ill, why should he have to limit any aspect of his life. I want him to be happy. On the other hand, I'm starting to have times when I feel abandoned and resentful. I tried discussing my feelings with him once, but he seemed perplexed. I've looked on our calendar for June, and see that's he's going to a 2-week music festival. In August, he'll be gone for almost a week; in September, for 2 weeks. This, in addition to other social events, like a friend's wedding in September. Any thoughts for how I can deal with this? Have any of you dealt with this? If so, how? 

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  • Posted

    Jackie- you are not alone. Your circumstances may be unique but it's hard for anyone with CFS to be a good partner...at least the kind they want to be. The long term answer is for you to well. Easier said than done...I know. Keep fighting.

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  • Posted

    It's time to sit down with him and have a frank discussion. Start by asking him to be in your shoes. If he was ill and left at home to do everything how would he feel. 

    Do do you do all his washing, cook food for him, if so, it's time to stop. The way I recovered from my Cfs was to stop doing things and learn how much I can do. Let him come home and there are no clean clothes for him to wear, no food on the table. It's hard but if he was sick he would expect food on the table, not for you to be away enjoying yourself. 

    Remember the the wedding vows, in sickness and in health. I think many men view marriage as an opportunity to do what they want and the wife becomes the new mother who does everything for them 

    so time for some tough love and if you haven't tried pacing I highly recommend it, worked wonders for me and now leading an almost normal life. 

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    • Posted

      Thanks for responding to my post, wknight. We did have a frank talk the other night. As a result, we're both going to try to get friends over when I have the energy. We have a pretty good balance of work in our relationship, considering my limits. He does so much for me--all the cooking, cleaning, washing, and errands. I'm physically unable to do any of that. I can do the more sedentary stuff, like taking care of bills, arranging repairs to house when needed. Anything that doesn't include physical labor. I so appreciate all he does for me. That's why I struggle with my feelings and don't want to try to limit him.

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  • Posted

    I have to say i have the same problem. My ME and Pots keep me pretty much at home and have done for the last 20 years. In that time my children have grown up and left home.  Myhusband has his own plumbing business and is still working pretty much full time so i am used to being on my own a lot. But about 10 years ago he took up Golf and started going for full days.. that turned into long weekends.. then full weeks for a holiday.  Its really hard... not because he does anything for me cos i look after myself mostly. But due to the fact when things are bad withmy health i can get out and doing things like shoppping and prscriptions etc. It makes me really anxious.  He gave up the golf last year and started breeding budgies .. i though that would be better but no... he now off to this show and that show and going visiting other breeders.  Hes also booked a holiday to america next month to visit his son. So thats me on my own again.. right in the middle of the worst syptoms ever due to the menopause.  Its like he just doesnt get it. Its really upset me so many times.. but i feel there is nothing i can do about it. though i have made a point of leaving him out of things ive done with the kids.. family photos etc.. He didnt comment and i just pointed out how its not nive is it when your left out of things... Not that its made any difference.   sad makes me feel i have even less comtrol due to these crappy ilnesses .. i also have POTS.
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    • Posted

      Re the menopause and M.E. symptoms - I've recently tried improving my diet and increasing magnesium (raw cacao is good source plus tastes nice!) and poatassium and feel it has helped the symptoms of both a bit.

      Golf now budgies - you have my sympathy!!!

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    • Posted

      Yeah, littleme. It sounds like we're having some of the same problems. A few times I've been so angry I've wanted to make a dramatic exit. You know, slam the door, get in my car, and go somewhere to blow off steam. Problem is, I can't drive anymore, I sold my car, and am too exhausted to leave. 

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  • Posted

    While I understand you don't want to limit or restrict your husband, your marriage is still a partnership, and he's chosen to stay despite your illness.  Good for him, and you, but I don't think that's license to leave for extended periods.  I find his choice to leave for weeks at a time disturbing, and cause to have some honest discussions.  I've recently gotten engaged, and it's a work in progress because of my health challenges.  If my partner wanted to leave for weeks at a time without consulting me I'd be hugely upset.

    This is a lonely life as it is, especially given that you are mostly housebound.  From your writings I know you've found good ways to cope, and I remember you saying your husband has done concerts at home so you could be a part of his music life.  Maybe he could pick part of the music festivals of most interest and go for a week instead.  Invite a few friends home to jam for an hour a week...invite close friends over who understand you can't engage in conversation but enjoy listening...develop things you can do at home together.  Let him read to you, lie next to you, watch movies together...if you don't do these things already.  Tell him how you're feeling.

    I have a long way to go to being "vulnerable" with my mate because our relationship is new and I have old (and recent) trauma around abandonment.  I'd be more comfortable with 34 years under my belt!

    At the end of the day, I emphasize communication, and not subordinating your needs to his.  He should be able to have an active life, and still make the relationship a priority.  

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    • Posted

      Hi, Nan. I'm very impressed that you remember me, including our house concerts. We're already following some of your very good suggestions, such as having friends over, and musicians over to jam here. We had a good talk the other night, so we'll be having small dinners (he'll get the food) with a few friends when I have the energy to talk. Music is such a big part of my husband's life, I don't want to try to limit his attendance at festivals and other music events. I'm just going to refocus on stuff I'm able to do while he's gone. By the way, congratulations on your engagement. 

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  • Posted

    Hi Jackie, it is difficult in a relationship when one person has their health and the other doesn't. I've been with my husband for over 20 years and have M.E. and he works full time, plays golf and likes going to concerts so I can understand how you feel. I used to feel resentful a lot of the time too as it's no fun being stuck inside on your own a lot of the time. 

    One day I decided to have a proper talk with him and tell him exactly how I was feeling. The solution we came up with is compromise. If, for example, he's going to be golfing all weekend then the weekend before or after I can choose to do whatever I want and we do something together so it gives me something to look forward to. You could also look on your time apart as your own quality time to do whatever you want. Do you have any friends/ family you could invite over? Do you have any hobbies you could spend time doing? You could treat yourself to a takeaway or a long soak in he bath with candles/bubbles - anything at all you enjoy as a treat.

    Remember your husband has stayed with you for 34 years so he must love you. He's maybe just unsure what to do to please you. You could maybe even write a list of things that would make you happy and show it to him.

    Hopefully you'll work something out - remember feeling resentful will drain your already limited energy even more. 

     

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  • Posted

    So sorry to hear this Jackie. I know how difficult this must be for you. While I have both good periods and bad ones, I know how lonely it gets when we feel too exhausted to funtion, yet we wish we had some companionship. So far I've been lucky that my husband is a homebody and doesn't like to go out much. However, you can't blame your husband for wanting to live life and do things that he couldn't do before when he was working. Has he always been social or is this a big change?

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  • Posted

    Jackie I am 73 and was thinking we would be doing loads to together when I was in my 50 ,s .but after ME got me 17 years ago I also have Lupus Fibromyalgia poly myalgia  diverticulitis etc 

    my husband is 75 and still works 8-30 - 6-30 and if I am in a relapse and have to stay in bed I feel very lonely ,

    when I between the relapses I try to go to church as Sundays is his motor bike days 

    he also works Saturday,

    but it is lonely I have given up saying anything as he does not change anything and he is going away in a. Couple of weeks to a motor bike do and in August he is away again and September x

    the reason why I don't say anything is that it will make me worse with my illnesses 

    on a good day try and get out even for 1/2 an hour as it will help you 

    I do the lighting Programe and it has helped me no end if you need to know more I could teach you about it I could iinbox you my number 

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    • Posted

      Carol--I'm very sorry to hear you're alone so much of the time. I can so relate to everything you say. Most of the time, I feel ok when my husband is gone. I think, just because I'm so ill, why should he have to limit his activities? But then, other times, I wish that he would at least take my situation into account when planning his trips. It seems that he just does whatever he likes, whenever he likes. He is a very loving person, though, and does everything for me that I'm unable to do, when he's around. That includes cooking, cleaning, shopping, doing errands. But I also do a lot for us--basically anything that doesn't involve physical activity. Like you, I usually don't say anything, either about his trips or about my illness, because any kind of stress only makes me feel worse. I especially feel bad when I explain my feelings about isolation and he doesn't seem to understand. I don't know what the answer is. This is a very awful, tough illness to deal with.

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  • Posted

    Jackie, sounds like you have a good understanding of both your needs and his. One thing that may help is to reframe your perception of his time away as his required recharge time. It's essential for him to be able to stay positive and keep contributing to your relationship and by having interests and time elsewhere, he can retain his optimism and continue to bring you energy.

    Having said that though - you need to get better and join him!

    How long have you had CFS, what have your tried and what's your current strategy for recovery?

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    • Posted

      That's a very good idea, Andy--to reframe the way I look at things. And very true that my husband needs his time away for his own mental health. 

      I've had ME/CFS for about 17 years, and right now I pretty much accept that I'll be living with this for the duration. I'm a woman of a certain age. Of a very very certain age. Of course I always hope that there'll be some breakthrough in research. I've tried so many things over the years, incljuding supplements, many kinds of meds, acupuncture, meditation, mindfulness, cognitive behavioral therapy, (CBT), graded exercise therapy (a total disaster). Nothing has worked for me, though the meditation and mindfulness have helped me to cope. But for anyone on this forum reading my post, people can get better, and I personally know some who have. At least ME/CFS is now being taken more seriously by some medical professionals, and some good research is in the works. I appreciate your response, Andy.

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    • Posted

      Haha you're welcome Jackie. Sounds like you've tried it all!

      Can I ask why the graded exercise was a total disaster?

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