I've been away (for work) for just over 24 hours, which I knew was going to be a real strain on my husband, but it saved me about six hours of driving, so we agreed an overnight stay was best. By the time I got back last night he was pretty much on the edge of things, so I've been doing everything I can to give him rest and peace (he gets very sound sensitive). But complete rest and peace are impossible in a house full of children (I have three from my first marriage, and we share a daughter) so it is hard to create the environment he needs. Plus there is always the wolf to keep from the door, and later today, unfortunately, I've got several more hours of work out of the house which involve leaving him to cope alone when he's really in no fit state.
These are the places where he starts going backwards (in terms of recovery) and he tends to get very angry about that. So far, he has kept Brian at bay (which takes, I imagine, great strength of will), but I'll have to manage the next few days very carefully if I'm not to provoke him into returning.
Whatever demons a person has, even if you thought them long gone and dealt with, an illness like ME seems to open up a crack and let those demons come back (sometimes, for a time, taking full possession). My husband's demons are paranoia and anger (the main part of the personality that constitutes Brian) - which he thought he had sorted out twenty years ago, during his recovery from a drug-induced breakdown (long, long, before I knew him). In conquering his demons, he became one of the loveliest men I'd ever had the pleasure to meet. But ME has brought them back to life, which has been a shock for both of us.
It has been peaceful here, despite practical difficulties, for a week and a half now - and I'm very grateful for that - but I'm aware the situation is precarious. My husband's demons are hanging around his illness, provoked by his symptoms and encouraged by his weakness, and constant vigilance is required to make sure they don't take him over again.
5 comments:
hey wife of brian, i am almost relieved you have mentioned your husband's previous drug-induced breakdown as i was worried about the way that brian is hijacking your lovely husband...the paranoia and anger you describe are quite honestly not typical of the picture of ME, i know a lot of people who have it, who have had it for many years... your poor husband is maybe more vulnerable to the challenges of this illness than the rest of us because of what he went though 20 years ago, you do need to be psychologically very strong to cope with the awfulness of ME... i think you yourself are doing an amazing job of juggling everything, & wish you both well.
I agree about the paranoia but I'm not sure about the anger. I was furious when I crashed this
time because it all happened just as I had a new future set up and then the whole lot and all the effort I had put in, went down the swanee. I also have a friend who has been ill for 10 years and is still furious: mind you he really does need to try and do something about that because it's wasted energy.
In the end I think most people are angry and shocked at the beginning and need time to grieve. Not just the PWME but those around them.
Eventually you do come out of it and think of things as a different life and not necessarily a worse one --depsite all the struggles. Waht else can you do ?
Hey Cusp & Wife of Brian, I think what I meant more is anger against others, one can be angry at the illness, without necessarily being angry at others. I always felt so relieved that I had someone to care for me (my mother & stepfather) during my severe times. But all of us will find our cracks showing when the illness pushes us. I have had many relapses over the years which have knocked me back to zero, I think I just learned to accept them without even knowing I had done so. I think disbelief & disappointment have been my over-riding emotions, but there is of course no text book on how to deal with the unpredicatability. I just feel the illness is hard enough on everyone, the PWME as well as the family, without having to cope with extra stuff (like Brian's extreme emotions). I do not want to judge Brian, but there is little point in me responding dishonestly to these posts. When I read them, I feel more concerned for Brian's wife than I do for Brian even although I know the hell of ME.
i've just found your blog and am awed ... how you cope with it all is frighteningly inspirational ... though as others have said i worry about you ... and grieve with you when Brian is around ... i don't have any words of wisdom to offer, just my invisible support ...
I think you make a very good point, nmj - spot on. This is all the old shit coming up, stuff he thought he'd dealt with, which was obviously just waiting there for him to develop a weakness. I'll maybe talk about this a bit with him, if I can pick an evening when he's not too exhausted.
This kind of links onto cusp's point (thankyou cusp) too - anger was really his big thing the first time... I saw a few snatches of it (the tail end) when we first got together, but we worked through those problems in the first eight months (we had to before I would agree to let him into my life!). We both believed Mr Angry (now identified with Brian) had gone forever.
This is all very helpful. It's beginning to cast some light on things. We've been so thickly mired in it for so long that it's hard to see what's going on sometimes.
And hello Shell, and thanks for joining in. Your support is very, very welcome. I worry about myself too, sometimes, but maybe there'll be less need to if I can understand better what is going on here by talking it through in public. It's definitely helpful, anyway.
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