Having not posted for nearly a month, you may be forgiven for thinking perhaps that everything was sorted out now. Of course, that isn't the case (though I really wish it was). But I took on a lot of work this month - and some other work that was supposed to be over has suddenly come back into play as well - and I've had so little time left over that what I have had has been necessarily given to husband and family. Not that they've had enough of me by any means. In fact another reason for staying away from here (even if I had felt, at any point, I could snatch half an hour to write something about the state of play) is that I have been avoiding thinking about the damage I am doing.
Is this wrong? There are times when I just have to close my eyes and knuckle down to work, even though I know my husband can't stand the current level of activity. I tell myself that it is only temporary; that it is necessary; that someone has to bring money in, and that someone has to be me. Because I'm freelance, work doesn't always come in manageable chunks - sometimes, the necessity to say "Yes" to almost everything (because there can be long periods of drought) leads to temporary overload.
So I've stayed away from here partly because I know he had been getting iller, and that my work (work I enjoy and want to do) has been the cause. There will be payback - both in terms of the longer time he will take, now, to recover, and because there is a good chance his increased level of illness and capacity - provoked by me going out there and having a life - will lead to problems between us. I don't want to be the cause of these problems. I long for what I still think of as a "normal" life where we both have stuff we do, and both is happy the other is doing stuff, and what I'm doing isn't the direct cause of his pain; a husband in good health, able to withstand the extra domestic duties that come from a brief spell of increased busyness on my part. I know this isn't what I have, so when I occasionally plough ahead regardless in a slightly bloody-minded way, I try to suppress my guilt.
Brian, interestingly, has not come back. I guess this is the point where I should stop being surprised about that and recognise that my husband has entered a new phase - he has gone from anger (about not getting better) to resignation (that he's not going to). Acceptance of the illness is a necessary stage, I gather, in getting better - but this seems much more like resignation than acceptance, and I'm not sure it's going to help him any more than the anger did. It's a great deal easier for me, in some ways - I much prefer not being constantly shouted at and having my personality flaws constantly exposed to scrutiny - my inadequacy as a nurse, my inability to plan properly etc. But he is completely without hope - he now says "I'm not going to get better". And the mind being a powerful thing, I can't help thinking he's making it true by saying it.
He's not open to any discussion about his approach to ME (believe me, I've tried), so I feel there's nothing I can do about this but be there for him and wait until he works through this phase and gets to the next. Trying to persuade him that he might get better only provokes anger (tickling the outer edges of the sleeping Brian). He's recognised that family life doesn't allow him the rest he needs to recover and that until at least some of the kids have grown up and left home (and the youngest become older and more independent) he won't get it. But we're talking easily ten years here.
I wonder - and I'm assuming the answer's no because of the appalling lack of research into ME generally - whether there is a significantly lower rate of recovery from ME amongst people with families. I read somewhere that the chances of making a "full" recovery decrease signficantly after the first two years. We're already a long way outside that timeframe (18 months outside), so it may be true that statistically, his chances of recovery to anything like normal health are slim. If having children around you keeps you ill because you cannot rest, does that mean ME sufferers who are also active parents are amongst those not very likely to ever make a full recovery? It's a depressing thought, and not one I really want to leave with, but people are beginning to wake up, and after my recent bout of overwork, my husband needs me to be present.
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4 comments:
you sound exhausted, as i'm sure you must be all the time ... it seems to me that you're doing what has to be done because in the face of harsh reality ... i still have no words of advice but i'm still here and listening ... relieved that made time to visit here as well. Just so i know you're ok-ish .. selfish, aren't i?
oops .. that YOU made time ... *hehe ... sooo need edit feature in comments!
Oh my dear, what a dilemna. I didn't think that everything was all right now -- though I hoped it would be for all your sakes so I kept coming back to check. Everytime I do return and read a new post my heart sinks because your situation is so familiar and it is not easy (to say the least).
I really do understand the juggling act of freelance work at the best of times (strike whilst the sun shines cos tomorrow it may be cloudy and no work --- I used to freelance) but I also understand the predicament of your poor husband because I was/am the one in that sitaution too and when I was finally diagnosed our children were and nearly3 and 6. Everything went down the shoot and it wasn't helped by the fact that both our mothers were old, ill and dependent.
I'm afraid that your husband's apparent submission to the illness is probably just another phase in his coming to terms with this blessed condition. It really is a grieving process (for both of you) and there are recognised stages to bereavement; though of course they don't move neatly from one stage to the next but move forward and back and forward and back: two steps forward, one step back until eventually there is some kind of resolution.
I don't think your husband has given up and given in. He's probably feeling pole-axed and sad and lonely and despairing and at some time, as his health improves a little (and it may do) he will feel a little differently. It takes a long, long time to come to terms with it all and the irritating thing is that so much mystery surrounds M.E. and the situation keeps changing: healthwise because you have peaks and troughs and politically/medically because no-one seems to sing from the same hymn sheet --and that's unsettling in itself.
As you say, you have to do what you do and keep the 'readies' coming in and work helps to keep you sane, but I would still investigate various benefits and any respite help which might be available as Maggie and I suggested before --- just to take the pressure off both of you.
I've no idea whether there is any actual research to say whether parents with M.E. take longer to get any better. Honestly, I would reckon it's a certainty. I have been ill before but never as ill as 7 years ago. I was ill when we had no children and it took 6 months to be able to get back to work (though I still didn't feel well). This time we had 2 children and there was a lot more going on besides their care but it was impossible to get the rest and space I needed and I felt terrible guilt about not giving them the care and time I wanted to so I pushed myself for them. They are a little older now --- 9 and 12 and it is easier. They are not so dependent and also understand my needs better. ( I feel guilty about that too but hey ho). This means it's easier to get better rest. However in the holidays it is very difficult and the 6 week summer break is a killer for me.
I know several people with M.E. locally quite well. Some have children and some do not. Of course the prognosis partly depends on how ill you were to start with, but honestly (and there's no point in being dishonest) all us parents struggle much more.
Now I just see it as the way things are and try to give what I can and appreciate all the good things the children bring --- the love, humour, motivation to get me out and about.
Sorry this isn't more positive but I feel I need to be honest.
Take care, keep talking/writing/posting. Take help if and when offered and just try to be there for your husband. He can only come to terms with it all himself and it takes a great deal of patience and stoicism from both of you
Love Cusp.
(Have a look at my blog to see the ups and downs of trying to keep going with the parenting side of things. You'll see I struggle all the time and sometimes I could scream with the ongoing struggle !)
Hi Shell, thanks for dropping in (repeatedly). There's nothing selfish about checking I'm okay; it's really sweet that you care, and I'm only sorry if most of the time you come back here there's nothing! Thank you for listening, and for letting me know you're there - it means a lot.
(And you're right about the edit facility being needed in comments - I need it all the time!)
Thanks cusp, too, for your long and thoughtful answer. I only wish I could reach him in his lonliness and despair. I don't want him to feel alienated from me when I work, but I know he does. And once there's a mental separation between us (which there very quickly is) it becomes very difficult for me to reach out to him. I feel like he won't let me.
I can't imagine how awful it must be to live the life he's living, but it feels as if not only is there nothing I can do to help him, everything I do towards having a normal life aggravates his ME. It seems next to impossible to get any kind of balance.
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