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melstevUK

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Reply with quote  #126 
Sotired,

I am not surprised that you are not feeling festive.  The story of your dog was heartbreaking - such a sick thing to do.  I really feel your loss because my animals have always been so special.  I think you are right to go out and get another though - you have the memories of the one you lost but there will be another to love again.

tina72 - the German Christmas tradition around the tree sounds wonderful!  i always prefer to leave my tree to put up at the last minute so Sotired, yes, definitely make it a German Christmas this year.

But you know there is one thing here that amazes me - and that is the fact that your d is here, and more than just here, she seems to have plenty of life in her to do the things she wants now.  That in itself is a miracle when you really thought that you were going to lose her and I for one was on tenterhooks, dreading to hear the news that she had passed away.  There sounds to be a stubbornness there and there seems to have been a shift in the relationship between the two of you, and also between you and the illness, which has led to change for the better. 

I cannot believe that things will not get better for you in 2018.  Heaven knows but you out of everyone deserves for life to be easier.  I have said before, your story has been one of the most harrowing but I really hope for a better year to come.  And starting off by getting another dog has to be a great thing to do.
Hugs!  You are amazing!
 

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Seabird

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Reply with quote  #127 
What we desperately need in NZ is funded trained ED community respite nurses.    Given that a large part of treatment takes place at home, and the unique nature of the illness and treatment, having some professional support that could visit the family home, give the carer a break for even half a day, or work intensively with the carer & person with the ED to iron out issues...

Don't tell me this isn't possible because I know from personal experience that this exists for other types of chronic illnesses.   There is a voluntary organisation for Motor Neurone Disease (a terminal illness) that has supplied this type of service on a volunteer basis but using trained experienced district nurses.

For spinal patients leaving Burwood Spinal Unit, they send a team of specialists to the patient's home if necessary around the time of discharge, as they are high-care patients with lots of gadgets & technology.  That is funded by the DHB.

For seriously ill persons with ED related medical conditions we have zero of that type of help available, I haven't even heard of it in the cities where they have ED specialists & IP/OP services. 

Let's see in 2018 if we can get this happening or at least get some traction on the idea, now that we have a government whose interests are more aligned with social services.   I often wonder why the NMD Society is so resourced and I'm not sure of the answer, could it be that it strikes males in mid-life?   

This has to be possible at some level.  And it makes good economic sense as well, as it would help make treatment at home more effective with less acute hospitalisations. 

SoTired, I have just read this entire post, my heart goes out to you, your family at this time.  While she is still struggling, there is definitely still a lot of hope for her. 

Sending all my love
Seabird  



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Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
Sotired

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Reply with quote  #128 
Hi guys,
It's ironic that you mention MND seabird as my mother died of that over twenty years ago now.it does happen to women,but it's less common I guess.im also thinking that the services for it have obviously made tremendous strides in twenty years as there was no respite care available back then-we had to get my mothers sisters to look after her when we took a rare break.
So maybe in twenty more years there will be respite available for caregivers of chronic illness patients.
D is being quite difficult-which is common here when she starts feeling a bit better.she is now planning to move out as she says I am too controlling.
The truth is that I'm exhausted with her.she is stubborn to the point of stupidity,she won't listen to reasonable thoughts on her diet-no fizzy,light food,no instant noodles.my h and I have made the decision to bow out of her treatment as much as possible from this point on.i know that many people here are willing to do this for years and years,but I am not.
If she has to fall flat on her face to accept that she doesn't know best,then so be it.i feel-and h agrees-that it's her stubbornness that will either save her or kill her.i want her to move out.i desperately need a break from her right now and for a while.
I just can't keep on with this.if,as you say seabird, we had some kind of respite care...if we had alternatives when fbt doesn't work...if doctors acknowledged that there are sometimes consequences to having had anorexia...but mental illness followed by physical illness is a kicker.
Apparently if you've had or have anorexia,nothing else can ever go wrong with you.its like a magic amulet against any other illness ever happening ./s
Melstev, it was my smallboy who had lead put in his drinkbottle-my dog died of sudden onset heart and lung fluid.once it went into her stomach,which happened while she was on every med available I made the hard decision to have her put to sleep.
We have adopted a new rescue sooner than I expected to but she is her own goofy character and we are enjoying her a lot.
We are off on a final family trip-final because I suspect that the girls will be living their own lives by next Xmas.or maybe I'm just hopeful they will be....

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Sotired42
Torie

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Reply with quote  #129 
Quote:
Originally Posted by Sotired
i desperately need a break from her right now and for a while.  


Of course you do.  And you really, really, REALLY deserve one.  Such a long, tough, scary journey you've been travelling.  

I think of you and your family often ... a non-gardener sent me a Japanese iris (my favorite) in the dead of winter here - wish I could send it on its way to your garden.

Please do take care of yourself.  It's been too long.  xx

-Torie

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Sotired

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Reply with quote  #130 
Thanks Torie.but it just never ends here.today I had to break my kids hearts,especially smallboys,and return our new rescue to the shelter.wonderful with people ,but even though we had been told that she was fine with other pets it turned out she wasn't as she grew more comfortable here.that is not what I wanted to do on Xmas eve.
D is doing ok currently but yeah,she and I don't live together well.she plans yo move out as soon as we return from the trip.
I just want this year to be over.

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Sotired42
Seabird

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Reply with quote  #131 
Hi SoTired

Actually my dad passed away from MND and it was more than 20 years ago.  My mum was one of the ex-nurses who then went on to do years of volunteer work for MND, visiting families in the Waikato region and helping them with practical solutions.    

We need fundraising and awareness raising here in NZ.   And maybe a celebrity or two.

I sincerely wish I could offer you some practical help.   Have you spoken with EDANZ lately to see if they have any ideas for the situation your d now finds herself in?   I have always found them helpful and inspiring to talk to when at my wits end or feeling overwhelmed.    

Does your d have somewhere safe to move to, if she moves out?  

Also just responding to Torie's wishes to send plants to NZ - unfortunately it is illegal to import fresh or viable plant material without a biosecurity import permit. It's a real rigmarole but our economy depends on NZ staying free from most of the nasty plant & animal diseases present in other countries (as we export agricultural products).   You should see the trouble we get into when one of the beagle sniffer dogs finds an apple in our bag at the airport.    This is how it goes:  you're picking up your baggage off the carousel, then the beagle comes and makes a lot of fuss, and the officer then has to interogate you: "Mam, do you have any fruit in your bag?".  Everybody's eyes are on you, as you admit yes you may have forgotten that apple or banana....

SoTired, I hope your christmas trip away does refresh you all, I hope you find somewhere not too hot, with a nice beach.    

Very best wishes
Seabird 

     





__________________
Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
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