Friday, 17 September 2010

Support-the act of bearing the weight of or strengthening

Firstly I NEED to say that none of what follows in any way refers to you, my friends. You are my support, my outlet and for all this I thank you.

I fly through my world very much alone. Most of my close or extended family are somewhat less than supportive, the subject of my health is rarely discussed or acknowledged. If I do venture to talk about some aspect of it, maybe because it is particularly difficult or worrying, then I'm met with almost universal indifference.

I know that it could be an attempt at denial by people who love me, but it never feels anything other than rude, hurtful and demeaning. I am left with a nagging doubt about how much they actually care. So, as a result, over the years I have learnt not to venture much information, as just keeping it to yourself is safer than trusting that others might acknowledge, and when they don't it hurts too much to keep putting yourself through.

Like sitting at the top of a steep hill, on a bike. Do you risk something, be a little brave and trust that if you ride down the brakes will stop you, or do you get off and walk, keeping things safe, cos the brakes didn't work last time, or the time before, and you got hurt.

Not the best analogy ever, but hey, sorry, ME-brain!

This is tough enough when it's the people you see occasionally, high days and holidays, but what about those you live with, the closest family of all?

I have been struggling for 10 years, trying to make my hubby aware of my illness and symptoms. You'd think he had a handle on it a little by now, but it appears not. Not only does he leave housework etc for days/weeks, till whatever has put me in bed has passed and I'm vertical (however wobbly!) again, but most weekends he sends me out to do things, the latest being to manhandle and collect 2 sacks of pig food! This is just typical behaviour, by no means the only examples dear reader!

I try to say what is happening to me, what I'm experiencing, especially on the days things are teetering and I really need to take extra care. I try to make it 'user friendly' and relate to things he might have an understanding of. Such as my almost perfected 'my muscles have no power today, lifting that mug of tea feels like it's a bucket'! I know, I know, genius!

Over the years I have come sadly, and reluctantly to the conclusion that he isn't really bothered. I reached this conclusion by the same method as we were all diagnosed, by a process of excluding all other causes first!

I tried the 'he's scared', no go.... then there's the 'he doesn't understand cos it's such a hard thing to get your head around' no go, after all these years and lots of explaining. I've comforted myself with the 'he's just hiding his head in the sand and hoping it'll all go away' no go....10 years, total indifference when I, or any of my friends speak about it has lead me to diagnose..............

A severe case of U.M.S. (Unsupportive Male Syndrome) with tendencies towards CCL (Couldn't Care Less)!

Not an easy diagnosis for us spouse's to live with but I'm doing my best!


  1. Oh dear :O( What a state of affairs !

    What do you mean by '..he sends me out to do things' ? What are you ? employee ? He can't send you out...he can ask and you then have a right to decline or accept a request.

    I think this condition can make us feel very vulnerable and in order to keep a status quo (which is easier to live with when stress is so debiltating) we sometimes lose our sense of perspective and self worth. After all it's bloody demoralising to have an illness that few people understand and professionals mock.

    I've learned that most people just dont get it ...with all the best will in the world... so I decided that it's up to me to lead the way. If I'm asked to do something I cannot do (at all or at that point in time) I simply say 'Sorry I can't do that ...or I can't do that at the moment ..' and stand my ground.

    This has led to misunderstandings and some conflict at times but I figure that I'm the one on the inside of this body and I know what is and is not good for me so other people have no right to judge and if they persist then I shall simply turn the other cheek --- that may be an upper or lower cheek ..depending upon my wrath :O)

    Of course I put myself out for the people I love and that has sometimes led my up the wrong path ... i.e. thinking too much about what others need/want and overdoing it ...which in the end means I have LESS to give because I'm too poorly.

    This condition is like trying to walk a tightrope, with blindfold, tacks inside your shoes and vertigo

  2. Cusp,
    He doesn't drive, and so if things need getting it naturally falls to me. When asked to order something to be delivered instead, he invariably leaves it too late-necessitating an emergency me!

    You never said a truer word about how demoralising it is, as you know things are going a little 'conference-shaped' in some areas of my life just now -things will improve I'm sure.

    I am not good at sticking to my boundaries, I'm often doing just that one chore too much cos it's easier than getting someone else to do it.

    I'm blessed with a 16year old who is great, and his father... who is more like a 10year old! If I ask hubby for something to be done, very often it CERTAINLY will not be, just a stubborn dude! Hence, it doesn't get done whether I ask, or I don't!!

    Still, can't seem to do much about him and his attitude, sorry have to go de-lint my blindfold and polish up my tacks!

    In all seriousness Cusp, I really appreciate your comments, not only do you leave me thinking, but you always leave me laughing!

    Take care
    p.s. I hate Status Quo, I'm more of a folk fan!

  3. Ouch, it's really hard when your partner is not onside. Mine is about many things, but very, very stubborn about others. He does listen but you know what they say about denial - it ain't no river in Eygypt.

    I recently decided to stop trying to do things I can't. For us, it is going en famille for trips out. I have suggested a wheelchair but you'd think I was suggesting I dye my hair pink and remove all my clothes in public. Oh the embarrassment of a wheelchair! He says he's afraid I'll lose condition in my legs. My foot.

    Sorry, I digress. The point i'm trying to make is that there comes a time when you have to say NO. I think you probably have more power in this relationship than you realise. Maybe suggest if he wants an assistant he could employ one? We have a cleaner - saves no end of arguments.

    Difficult one Zarla. Hang in!

  4. Jo,
    Yes, you may be right about the balance of power in the relationship, and Cusp is right when she says its eay to get demoralised.

    We've spent an hour or two talking this afternoon and although he's still not on the same page as me, we are at least on the same chapter...!

    Onwards and upwards.

    I'm sorry that your chap can't yet embrace something that would make life easier for you, and the family, I think mine would freak too.
    Maybe if you told him about the pink and naked alternative.........!

    take care Jo, and thank you

  5. I'm so glad that the two of you had talked by the time I read your post. I was going to suggest that you write a letter to him -- not an accusatory one but one where you use the word "I" not "you" and talk about your limitations, your own disappointments about life, your own dashed dreams. I've heard of that being an effective way to communicate when face-to-face just includes too much emotional baggage.

    I hope your talk has opened the door to his getting on board with your illness. Unsupportive Spouse Syndrome is not something you need to add to your plate!

    Love to you,

  6. Toni,
    The letter is a great idea, and I can see I'll maybe have to use it at some point.

    I have managed to cope with the situation for 10 years, but i'm just not prepared to anymore... especially as lately i have met PWME whos partners are very much better than mine own!!

    As you say Toni, my plate is heaped at the minute, i just don't have room for any more, and i'm on a diet!

    I hope things are going ok with you, and that you are taking care.



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