Linda, been there done that, to a certain extent. Long ago. husband has always been pretty good, but family - another story. My own family would have preferred to believe I was crazy, than perhaps really suffering. Co-workers didn't want to know, so I didn't tell them. But they still resented my disability and accused me of "ramming it down their throats" even though I said nothing. It was my changed appearance that was speaking volumes.
A drama group I belonged to and had been a frequent leading lady of, suddenly stopped acknowledging my existence to the extent of announcing audition results by first name only, when another person called Marg got the role - they didn't make it clear WHICH Marg, because clearly in their minds, I no longer existed. Thankfully I was not taken by surprise with this, I simply observed body language to know immediately that they did not mean ME.
The problem with fellow actors and co-workers - it was fear of their own mortality and frailty. I was one of the youngest, and here I was struck down with a mysterious and alarming ailment. If it could happen to me, it could happen to anyone, so therefore I was no longer acknowledged (so they could pretend that I, and my challenging disability, did not exist).
With family members, it is a combination of denial and fear, but a different kind of fear. They did come round, in time. With friends - I lost a lot because I could no longer keep up with my previous lifestyle. But I have made new friends.
I think what is happening with you, is a combination of denial, and husband feeling that you've been ill for long enough now, people are generally recovering by now. He's had a gutful, he wants you back the way you were before and perhaps thinks that since pandering to your illness hasn't worked, then bullying you out of it like a personal trainer, may have more benefit. And all these doctors who keep fussing over you - clearly it's making you focus on illness rather than wellness. In his mind. That's one reason he won't go see them. And the other reason - because he knows they will tell him what he doesn't want to hear.
And maybe a part of this is hope - he really wants you to be well and is almost fantasising about it in his desperation.
Sometimes, often - people can be really seriously ill, treated symptomatically, have lots of tests done and slowly recover - all without ever getting a diagnosis. I suspect this is what he thinks is your case.
My suggestion - treat him like any difficult child. Just say, "I'm glad you think so, I really want to be well too." In the meantime, pace yourself. If he nags you to do more, tell him you need to listen to your body so you don't undo the improvements he has seen so far. He told you to rest - maybe that is what has triggered this 'improvement', so you need to keep doing what he told you, and rest when your body tells you to.
Let him know that 'while you are improving, you still are not fully recovered', and so will need ongoing assistance until you ARE fully well again, to make sure you continue to improve. "This is frustrating for you and me both, but we must go carefully."
There are other ways to cope, in the meantime. Make lists, get him to make lists. Cognitively, I'm STILL not what I used to be (or should be) and lists help me when I've got too much piling up. I also used to fill every spare minute, and found that when I tried to do as much as I used to, the majority of it didn't get done. I have needed to cut right back and look on every thing achieved as a bonus.
I've got napping down to a fine art - I need to nap, but I break it up through the day (unless I'm really a mess, in which case I could sleep through an earthquake - I have, as a matter of fact). I also tend to not nap if there are other people (apart from difficult child 3) in the house. I time my naps so I'm vertical and coping (sort of) when everybody comes home.
Laundry - I rely on everyone else to do their bit. All items for the wash must be put in the laundry by those wanting it done. Failure to do so - it won't get done. Some compromise is OK - I will empty laundry baskets, but only if they are put where I can easily get to them. I will not carry them far.
All house mates must do the following - all pockets have to be emptied (I still check difficult child 3 - he collects stones, sticks, feathers, shells, discarded rubbish). Any stains must be soaped, sweat stains/smells splashed with vinegar. Again, I do it for difficult child 3, but I'm making him do it with my supervision. We keep a bottle of vinegar in the laundry, purely for the deodorising purposes.
I do the laundry once a week. Anyone without enough clothing to last should either buy more clothing, or do a mid-week wash for themselves.
I get help to hang out the washing - it takes a load off the family. My arms fatigue really fast if I have to hang out the washing. I can get it off the line, though.
I've found easy ways to hang out laundry, for when I must do it. I teach those ways to whoever helps me - all shirts on a wire hanger, very top button done up, shirts fluffed out by being shaken, care taken to smooth out wrinkles with the hand. Once dry, they go straight into the wardrobe without needing to be ironed.
t-shirts - fold over the clothes line, peg at armpits. Any stretch-knit fabric - same. Trousers - find the creases, fold carefully along the crease and thread them through a wire hanger, hang on the line that way folded. Again, done this way it all goes away without needing ironing. It takes slightly longer, but the time saved by not ironing is worth it. Besides, my arms don't get tired once the item's weight is taken by the clothes line, I have the energy to smooth and peg carefully.
Getting clothes off the line - I get off each person's clothes at a time. All mine. Put away. All husband's - put away. And so on. I fold as I go. I used to put each person's washing neatly folded into a different-coloured plastic tub for each. It was then that person's responsibility to get that tub back to me, empty, by next washing day.
If you need to, write these rules up on a big sheet of cardboard and tell everyone that you're getting organised and want everyone else to follow your new rules. You don't have to use your illness as a reason - this is just commonsense and training for an independent life for kt.
I have more, but you get the drift. We shop to a list, not because I can't remember but because it's been shown to save money. No more impulse buying. I try to avoid having to go out on consecutive days, so I always (hopefully) have a day in between, to rest.
I'm always prepared to catnap in the car. Even difficult child 3 is good about this - he sits there and plays his Nintendo DS quietly until I feel rested enough to continue the journey. It's the safe and responsible thing to do - I'm setting a good example for other drivers. It's not because I'm disabled, it's because I'm responsible.
You see? You find another reason for what you're already doing, and you minimise its impact on husband as much as you can, without compromising your own management. If he wants to encourage you by telling you how well you look, thank him.
I get people saying to me, "It's wonderful to see how well you are at last. I'm so glad to see you're no longer disabled."
It's a statement of challenge - "don't you dare tell me you're still not well, you would be calling me a liar."
I usually respond with, "Thank you, I'm glad you feel I look so well. It's good to know, I do worry that I look tired."
It's a statement that is not calling them a liar, but nor is it denying my illness. And it's not rubbing their noses in it, either. They can believe what they ant, but I have not had to lie, nor challenge. Socially, it's the best option. People say, "How are you?" but they really don't want to know.
A last word - forgive my atrocious phonetic spelling, but here is a recent lesson in Chinese. They say "hello" by saying, "nee how". It means "how are you", literally, but it means SOCIALLY, "hello". If you want to REALLY know how someone is, you say, "nee how-ma" because the "-ma" suffix is only a question mark. what its addition means is, "how are you, and I really want to know."
Linda - husband doesn't really want to know. Not at the moment. He's burnt out, I suspect.
Hang in there. I'm here if you need to dump on me. I think the same goes for everyone else.
Marg
That would not be a good thing.
