Marriages and ME/CFS

Hi, Jackie00198,

I'm not married now, but was briefly at the start of my illness.  I have multiple conditions, and the primary one that became secondary to the CFS after surgery, began on our wedding cruise.  We had one week of married life before I became ill, and our marriage ended two years later.  The fact that you've stayed married 17 years into your illness is a testament to your strength as a couple.

For me, isolation and loneliness are pervasive having CFS, and I speculate that's the case for anyone with a chronic illness.  After my marriage I was in two long-term relationships, and it was hard not to be able to do all of the things I wanted to do as a couple, and often be left to stay at home.  In both my marriage and relationships, I know we both felt sad and disappointed sometimes.  Sometimes we expressed it, sometimes we didn't.  I continue to feel "less than," often, despite knowing that it's not my fault that I'm sick.  One of my ex'es is now with a woman who has a lot of energy, and that's still painful to me.

I think my ex, like your husband, sometimes thought I could do more.  Sometimes I could, because it was more depression keeping me down than fatigue.  But most of the time it was the fatigue.  NO ONE who isn't ill with this understands the level of fatigue we contend with.  NO ONE.

All that said, I encourage you to keep a dialogue with your husband as much as possible.  Tell him how you're feeling, and see what you can do to remedy it.  When he's home, sit on the couch next to each other and watch a show.  Lie in bed and take a rest together.  My ex appreciated that he could rest more in our relationship and not have to be "doing" all the time.  If he can text you during breaks to tell you he loves you, ask him to do that.  If you're open to counseling, consider it.  A good therapist who has experience with people with chronic illness can really help.  We got help, and even though it didn't save our relationship because there were other serious issues that we couldn't resolve, it still helped.  

There are a few books that might be helpful for you to read as a couple--Living Well With A Hidden Disability, and The Chronic Illness Workbook.  I think they help explain what it's like for both the person who's ill, and their families.  It affects the whole family, after all.

I spend about 3/4 of any given week alone, and right now I live alone.  It's hard.  But I have a very close relationship with my sister--we talk at least once/day; and I am cultivating more friendships, being selective of who I pick to befriend because my time and energy are so precious, and I need a network of positive and supportive people.  I belong to a non-traditional church where I connect with people when I have the energy to go.  I know everyone has problems, but I now surround myself only with generally positive people because negativity is an energy drain.  I deal with depression and sadness every day, and don't need more of it.

So that's my final suggestion.  If you don't have one already, see if there are local support groups for people who are ill; try to cultivate friendships with people who are kind, empathetic and supportive.  That way when your husband is away, you can talk for a few minutes on the phone, or someone could come by if it's not too much for you.  In my town I'm a volunteer driver for an organization that provides transportation, companion services, a food bank, etc. for those who are homebound.  I'm thinking about trying to do the companion thing, even though two-three hours is a big committment, because I find it gets me out of my head, and the house, and helps me to help to others in need.

That's probably way more than you were looking for, but this is a subject close to my heart, and IMO important to speak about it.  Otherwise we get even more isolated.

Best to you,

Nan

 

Hi jackie; I too, do somethimes feel this way, as my husband has often had to travel away from home due to his type of work, but have only really felt the "lonliness" this year, as previously have always had one of the children at home......this year our last moved out to his own abode (even though this has happened before, he has always come back home for a few months (in between flatting with mates), but I think this time will be IT.....although like this weekend he came home and spent the two nights of the weekend, here.......but to answer your question, I think it's Things like this Forum, that helps to keep me in contact with others (especially those who understand, and know the appropriate answers/conversations.....and of course not having to Drive to spend time with others)......I read A LOT......and do the little bits of housework that I can, and Do feel proud/satisfied when I have achieved same........and as I have always enjoyed (get satisfaction) from researching/learning re New thoughts/ideas etc from the Web (makes me envious of the fact that we have this commodity of Internet/Google etc, as in my days of studying at school/early career studies, that we had to spend hours/days in the library to get our information)......so I guess, as others will say/offer ideas.....and I know a lot say, volunteering, which is not really an option, as we are still what I call, unreliable,......you will get some support/ideas...........and let us know what you find from others, as it may be our answers, too...............Bron

I don't know if it's an option for you, but have you thought of online studying - at your own pace? Future learn (Google it) do online courses, free, that you can take as slow as you like with no pressure or exams. I find it gives me a sense of achievement when I complete each little section, and keeps me in touch with what's going on in the world, even though i can't travel to places . That organisation is part of the Open University, but I think there are other places that do something similar. They didn't exist when I was last really low, 30 years ago, but i did correspondence courses from the comfort of my couch!

We have just celebrated our Ruby Wedding (40 years) and for more than 30 of those years I've had ME to varying degrees.So it is possible to have a long and happy marriage. It must be difficult for our husbands/wives to see their loved one suffer and not be able to understand how they feel, and why. I know on occasions my husband has said "why can't you just try harder" or "of course you can do it" or something similar, but I have to remind myself that it's only because he cares about me. Also it must be frustrating not to know what to do for the best to help.

Hi Jackie,

Thank you for your post as this is something I’ve been thinking about for a while as it is such a burden on those around us, who love us, as well as on us.

Like you my husband and I have developed parallel lives to an extent having different hobbies brought on by different energy levels. I know my husband finds it very difficult to talk about my illness and the inevitable hardships and the multitude of lost opportunities we have had during the past 32 years.

I live with my him and 2 grown up daughters so have people around me who love and support me; I am close to my mum and sisters and keep in touch by phone (they live an hour and half away from me); I text and email friends and ex-colleagues and now only keep in touch with positive, supportive people as I have had my precious energy drained by people in the past. I am also more upfront about my illness with new people I meet than I have been in the past, then they can take it or leave it.

Since retiring through my ill-health I have taken up new hobbies (painting and drawing – I’m no good yet!!) and enjoy meeting new people in the classes. Needless to say, I don’t always go to class because I’m not feeling up to it. I have bought some DVDs run by The Great Courses which I can dip into when I’m feeling ok and I also practice chi gung and tai chi when I can.

I’m lucky in that my husband doesn’t push me to do more than I can and my family sees more often than I do, how unwell I am. But friends are still sometimes exasperated by me having to call off an engagement. So be it.

I still loathe those awful days when I’m on my own and I’m really not well,  when I feel like I’ve been run over by a  bus and when the day stretches out interminably before me and all I can do is wait until I can go back to bed and hope I’ll feel a little better the next day. That’s when I feel all alone.

I do feel the benefit of this forum,  though I don’t often post, I still read the majority and realise I’m not alone and that there are people out there who wish you well.

Could you perhaps invite your husband on a “date night” when you’re well enough and he’s at home? A nice dinner with candles etc or a DVD? Or perhaps you could plan a meal out/ outing/holiday/ depending on your energy levels? Maybe he feels “abandoned” because of your illness too? Don’t forget – it could be as a result of simply being together for 32 years!!

Thinking of you and hoping you have received lots of good ideas from everyone.

Liz