It has become a necessity of our situation that I stay as buoyant as I can for as long as I can. Frequently, when I "crumble" in some way, he gets angry with me. He sees it these days as me placing unreasonable demands on him; as me, either blindly or selfishly asking him for emotional support when he is the one that needs support. He has said several times in the past he is tired of being the one to prop up my confidence when it flags. Yet he doesn’t do that now, hasn't done it for a couple of years. I relied upon him for this kind of support before he got ill, but I don’t think he sees it as his job anymore. As he points out, I do have other people around that are currently wonderfully supportive in the way I need them to be. But none of their support means as much as his would. If he felt he had the energy to give it.
These days, he just doesn’t. He can’t muster up the enthusiasm. His life has been taken apart piece by piece until there’s nothing left. Compared to what he is suffering, my losses are pathetic, not worth the energy. What on earth do I have to complain about? So some biggish piece of work has to be torn up and started again; so what? He can barely get through the day. Every day. You can see why he is unable to support me. But I miss having that part of him, the friend who won my trust with his support, because that man seemed to really care for me.
The things that were always important to me, like my work, don't get any less important to me now that he's ill; in fact, in some ways they become more important. I run to my work when I feel I don't matter to him like I used to. And so the gap gets wider again.
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The prospect of tearing up a biggish piece of work isn't a trivial thing; it's bloody huge! One person's suffering doesn't grant them a monopoly on pain and sadness, however crap/exhausted/frustrated they're feeling. Your current situation is no less tricky to deal with just because your husband's difficulties are ongoing and chronic. It's very good you can give vent to your feelings on this blog; very often the needs of carers/supporters/spouses are overlooked in the arena of chronic illness. Let's hope, for all your sakes, there's light at the end of his tunnel soon; but in the meantime, nurture your own flame. x
"You can see why he is unable to support me." Well, yes and no. Clearly he is still grieving for the life he might have had. The pain of this can be overwhelming and bitter gall. He has to get over it, for his own inner survival. I don't mean that as in "hey, get over it." Perhaps "move through it" would be a better way of expressing the process. There are many with this diabolical illness who lie in a darkened room, year in and year out. There isn't a day I don't think of them and say thank god for this, even just this bit of life I can live. And the chances are that your husband will get better – not necessarily recover and be as he was, but get a measure of strength back. Meanwhile, it sounds as though his family, and your career, are more or less thriving – and this is good news, he needs to remind himself, or someone else needs to (though they may not be thanked for it). Your work is a good thing – for you, for the people who appreciate it and (he must see this) for him too. What’s not to support? It’s not as though you’re out clubbing every night. And support can be given in many ways, just to know someone is actively (in their hearts) on your side is often enough, as long as you are not perpetually presenting him with a list of unsolveable woes – and that’s not the picture I get.
Well I still think Brian is in 'survivor' mode but it wouldn't be too much to remind him that you *have* to have a life too. As RTS says, he may not like it but that is how it is. If you don't have a life and 'nurture your own flame' (love that phrase) then the whole house of cards could fall down.
On the other hand people can only move through a process as quickly as they are able so maybe he's just not 'there' yet. I think the best you (both) can do is to try to hold on to the better times ( like that nice stroll last week)and then remind and support each other in maintaining mutual patience, caring and love.... and you need to find ways of showing it -- no matter how small. Even if that amounts to one making a cup of tea for the other when even that is difficult. Otherwise the illness and your own dilemnas and struggles will eat you both up.
Try to keep moving together hand in hand
Thank you all for your supportive and helpful comments. It really helps me get a perspective on things - and when life here is particularly hard, I'm especially glad to have your kindness and wisdom (where once I had my husband's). There have been positive developments but I haven't had time to share them. Soon, I hope.
This blog has been an active part of forward progress for me, so thank you, all, for continuing to visit and comment. If my postings are sporadic, that is only because time to concentrate on myself is desperately short... but don't go away. I need you all.
Wow. I seem to have come to this at just the right - or perhaps wrong - moment. I have ME. My boyfriend's family has been concerned that he will become my carer.
At my ME management group many of the problems people faced were not with the condition itself - this they could cope with - but how to deal with it in terms of other people.
There is an economist, Amartya Sen, who describes the concept of freedom as that which allows the individual to be the person that s/he has reason to value. This is a basic human right. By the sounds of it, neither you nor your husband are able to do this and it is actually part of the function of the state to rectify that.
It isn't a matter of your or his failure: when a crisis hits - be it financial, environmental or physical - it is impossible to carry on living as before without some external assistance.
In reality, you may not be able to get external assistance - DLA and the like are ridiculously fickle and hard to come by. But at least you should take comfort from the fact that this is not an ordinary situation and any tension that exists is not the doing of either one of you, but due to the nature of this misunderstood illness and the situation.
As well as a horizontal person, I'm also a mediator and, to be awfully Oprah about it, it seems like you've had a breakdown in communication. And it's understandable - I feel so awfully guilty when my boyfriend asks me how I am and I am not able to say "ok", not only because it gets so boring after a while but also because it makes him mad that he can't do anything to make it go away.
It's extremely important that you look after yourself and make sure he understands that the illness affects you as much as it does him. If mediation (which is free) is the only way to do that then I wholeheartedly recommend it.
Gosh - I have far too much to say! I'll come back and make another comment another time.
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