Tuesday 25 November 2008

When is enough enough?

It's not like I haven't been here a thousand times in 20 years but every time feels like the absolute last time I can bear. And yet I'm still here. Truth is I can't move, I can't leave primarily because I just plain ain't got the strength. Not because I cdn't live without him (cuz believe me I have reached the point where I soooo cd!) but I mean I really ain't got the physical strength. That's one of the worst things about ME, there's so many things I want(ed) to do with my life and this illness has robbed me of the opportunities. I don't really like moaning like this. I try to keep as optimistic as possible because otherwise I wd have curled up and died years ago. but when is enough enough? When do you reach that point where you have to concede that nothing is ever going to be right with this man, that he is never going to admit or accept that he has problems that are nothing to do with me, that my life is never going to be any better than this!!! god that's depressing enough all by itself. This is as good as it gets.

I put into Google "living with ME/CFS and a bipolar partner" and every page was about either one or the other but not both. Somehow I doubt I am the only person in the whole world who lives like this. Maybe they're all too busy trying to survive to bother writing blogs like this but there must be somebody who can sympathise. Of course that's not including the child. If I looked for people who have ME, live with an undiagnosed bipolar partner AND have an autistic son, I somehow doubt I'd find many pages. If you are out there please let me know. Even if it is just to have a bitch about it all, there must be someone out there who feels as desperate and in despair.

Is there a point to this rant? At this point, I don't think so because I have nowhere to go with anything. I can't move out cuz the child can't be disrupted like that. I can't bear living like this, tensing up the minute I know he's home, dreading what he's going to find to scream about now. I just need to get this all down cuz I really believe someone needs to hear what I live with so when enough really does become enough, there is a record of my side of things. So being as I have to be here, at least I have some way of releasing all this frustration and misery.

We've had a couple of weeks of him being half human and relatively normal but the little things start happening again. He went away with the boys for the weekend and my son and me had the best weekend in years doing absolutely nothing. Not surprisingly when it's just the two of us, we have no stress, he does what I ask, he doesn't argue about food or anything else, and we have a totally chilled time together. Over the weekend, I had put whatever plates etc in the dishwasher. First thing Monday morning, I find him handwashing a load of dishes. We have a dishwasher and yet he had taken the plates OUT of the dishwasher, leaving one plate and one bowl and all the cutlery in the dishwasher (why?!) and handwashed them. Sorry am I missing something here? is the dishwasher there for decoration? Why did he leave one plate and one bowl? I spend my life trying to make him understand the problem is him getting these "manic" episodes where he is looking for things to do and excessively screaming about trivial things and generally acting like the only person who exists and matters in this life is him. He does not see behaviour like this as a problem. The dishes needed washing. Yes but they were in the dishwasher, why did you need to take them out of the dishwasher and do them by hand. No doubt he will justify it by bleating on about how much energy the dishwasher uses, how it wasn't full so it wasn't right to put it on half full, how he had to do a few glasses anyway so he did the plates as well (oh he left about four glasses in th edishwasher too btw). Amazing how if I only did part of a job because I ran out of strength and energy he wd be screaming. I can't really expect most people to understand why this seemingly little thing is so upsetting to me but I think it sums up the problems. It was completely unnecessary to do, he left 1 plate and 1 bowl and all the cutlery so it cdn't have been that important yet he doesn't see the fact that he was even doing something so unnecessary is Manic. Then this morning, my son is sitting there waiting to go to college because his father said he'd drop him off, I'm sitting there in tears and having a bad time trying to get going and he suddenly tells me to turn the tv off and starts trying to discuss the itinerary of our upcoming holiday!!!! Is this the time and place? How come when he wants to discuss something I have to turn the tv off because it distracts him but when I want to talk to him about something he doesn't even have the decency to take his eyes off the tv and actually listen to me! If he's on the phone I am not allowed to try and say anything to him yet the other day when I was on the phone he came up to me and started showing me a little ornament as tho I'd never seen it before and started trying to tell me it was broken apparently or whatever and when I pointed out that I was on the phone, he just gets angry and stomps of ranting. There are so many instances like this every day, I don't know how much more I can take. They all sound like such small things but when you have to live day in and day out with this unreasonable irrational manic response to every tiny little thing in life, it really is too much to cope with.

Fellow ME sufferers will understand, bipolar sufferers might relate, parents with autistic children can relate to how difficult THAT is but even I can't quite believe myself how hard it is to live with all three! I think that's the point, most rational human being wd not still be living with it after twenty years. How much easier wd it have been dealing with this child if it was just the two of us? Wd his father be as bad if we had a "normal" child? I don't even need to suggest how different things wd have been if I didn't have this illness. The fact is I do and I do have these other difficulties to deal with so I shall just put my best Sagittarian foot forward and carry on regardless. I think I just need to do this more often. I feel so much better for just letting it all out. Maybe there is someone somewhere who can help tell me how to keep up this positivity cuz I'm beginning to lose it.

4 comments:

Cusp said...

Well actually you're not completely alone because:

your growing up sounds like mine; (constantly sickly), relapses, undiagnosed, doggedly, stubbornly carrying on into and through adulthood I was only diagnosed seven years ago and I'm in my 50s now

I have a son who has various disabilities and who is also mildly autistic

I have a very close relative who is bipolar but it has taken years to get a diagnosis there too. I have seen how this has given that family no end of challenges -- for him and for the rest of us (the extended family) Now there is a diagnosis, all sorts of situations from the past are falling into place and more understandable.

...so, just so you know, you don't need to feel alone because there are some people who have some understanding of your situation and have empathy with the difficulties you face.

Take care (((*)))

Geraldo Maia said...

Susan,
From Brazil a friendly hello with my best wishes:
Geraldo

Reading the Signs said...

Empathy from me too, Susan, even though I don't have to shoulder all the things that you clearly do. I've had M.E. for over 20 years. I have a niece who is autistic spectrum but I only look after her occasionally. I am fortunate in having a husband who is very supportive and don't know how I would have managed without this, especially when our children were growing up.

I sincerely hope you find a way to get the support and rest you need.

nmj said...
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