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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 

     





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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  #132 
Hi everyone,
It’s been a while since I posted,but I thought I would check in.also at this point I use this in part as a diary of sorts.ds weight is staying pretty much stable which is the good part.she weighs iaround 49kg.this doesn’t seem to have stabilised anything else sadly.
She has now had two cases of cellulitis since Christmas which have taken a long time to heal.last week she had a seizure which was as frightening as all hell to be honest.it went for quite some time as we had to stay on the line with 111 til the ambulance came and she was fitting for most of that time.her potassium was low but it’s been lower and she has never had that reaction.so she was in hospital nearly a week.while there she had to have her nj replaced.
It has taken me a long time it feels like to recover from the seizure she had.my middle child was very badly affected by what she saw and that’s been hard too. I wake up with knots in my stomach but I’m hoping over time I forget.
We had to return the first dog we tried adopting after the death of my other dog as despite all my diligent checking beforehand she was not good with our other pets.we have since adopted a different puppy who fits better with us and our pets.
I don’t know what the future holds for d.all I know is it’s harder than people think to live like this.

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Sotired42
Torie

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Reply with quote  #133 
One my gosh, Sotired - two bouts of cellulitis AND a seizure?  Since Christmas?  I'm so glad you posted because I think about you all the time, but that wasn't what I was hoping to hear.

Is your middle child off school for summertime?  We are having a very cold winter so it is hard to imagine you out in your garden.

I hope you are entering a smoother patch now.

Hugs xx

-Torie

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Tali97

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Reply with quote  #134 
Hi SoTired,

I was hoping to hear that things had improved for you.
{{{Hugs}}}
I hope that the seizure was a one-off and that you get a chance to relax and heal.

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 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
eternalhope

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Reply with quote  #135 
Dear Sotired, I am so sorry things haven’t improved for you all. I think of you all often and continue to pray for you. God bless you all.
Sotired

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Reply with quote  #136 
Hi Torie,Tali and eternal hope,
Our summer holidays just ended Torie-here you get around 6-7 weeks off from just before Xmas because we have 4 terms in a year.between each term is a two week holiday period except for the last one.so my d was back at school but did have the day off to recover emotionally.smallboy slept through the whole thing so didn’t require any special attention as he is used to his sister going to hospital.
In some ways things have improved Tali-after contacting the health and disability commission and hearing back the very next day that it was likely we had a case,the hospital have finally come on board and are treating my d like an actual human being with actual physical problems.so it isn’t all doom and gloom.
It’s just...me.im struggling.
I’ve gone through so much with d that I genuinely arrogantly assumed that nothing that happened with her could really frighten me anymore.sadden me,frustrate me yes,but frighten me?to be honest I thought that ship had sailed a long time ago.
The universe put me right back in my place there,because since the seizure happened I wake up every day with shaking hands,a sore stomach and an underlying feeling of dread.theres no more reason for those things than anything else that has happened over the last 5 years but ,well,here we are.here I am anyway.
Hoping this feeling passes soon.d is still very pissy about lots of things and so not very easy to live with either,but I am really laying down the law there cause it’s her choice to live with us.and even though she is officially an adult she has no say in how I run my house.she is not enjoying that.
They are talking about putting a peg tube in so that would be nice-aesthetically anyway.she might get more confidence without tubes on her face.
Thanks for checking in guys

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Sotired42
toothfairy

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Reply with quote  #137 
Hi Sotired,
I really feel for you, I was hoping I would read that you were doing better.
Thinking of you.

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in very strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine. Recovery is possible.
Mamaroo

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Reply with quote  #138 
Hi Sotired, thinking of you and your family and sending lot of hugs 🤗🤗🤗🤗🤗🤗
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
melstevUK

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Reply with quote  #139 
Sotired,

I don't know what to say other than that I really feel for you.  That must have been so incredibly scary to witness.  You have been living on a knife edge for so many years - and then to have to witness this latest episode, just so awful for you.  Do they know why her potassium level became so low again?
Your life has been one long road of trauma and PTSD.  So unfair.  
Hugs.  You need and deserve them. x

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Sotired

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Reply with quote  #140 
Thanks tooth fairy,mamaroo and melstev,
It’s been interesting here.d had a friend come to stay for a few days-gave me one days notice,but hey,all good,right?😂she’s had a good run at the moment-no hospital since the seizure.so her and her friend had a lovely few days and then suddenly she was looking at two flats,accepted one on the Sunday,moved out monday(yesterday).
She is living about five mins by car away from us so she hasn’t moved far but we really need our own space from each other.when she’s sick she’s very needy,when she’s well she’s pretty obnoxious.so hopefully some time away will work out.
D goes back into hospital on Monday anyway for a planned admission as they want to do the ng as well as nj tube at the hospital now,with an eye to changing that to a peg tube later.so her moving out doesn’t mean that we won’t be doing her admission with her-i will be taking her in and staying with her some of the day.
I am very aware of how lucky we are to be at this point because I was very scared we would lose her back in October.as always I want to acknowledge the support I get from you guys.it often helps me spur myself into action after moping and poor me-ing.you guys helped me find the strength to file a complaint and it actually got us what we needed.now d is well enough to try living in a flat.(albeit ,not far from us).
I am slowly recovering from the frightening experience from her seizure and the second bout of cellulitis.very slowly it feels like,but I am moving forward.
For now I’m just going to enjoy the relatively peaceful house and let myself be calm.

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Sotired42
tina72

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Reply with quote  #141 
Hi sotired,
thanks a lot for that update. We all thought about you and how you are doing.
Great that she had some nice days with her friend, such normal things remind us that there is a normal life to be lived outside and that is what we are aiming for.
And also great that she moved out to a flat near your house, so you can see her but have some distance also.
I hope she can find some peace and learn to live her own life.
And I hope you can calm down a bit now and do something nice for yourself.
Please keep posting, we are with you in spirit.
Sending a big virtual hug from Germany,
Tina72
eternalhope

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Reply with quote  #142 
Sotired,thank you for the update. I think of you all often and keep you in my prayers. I’m so happy to hear of her progress. It gives us all hope. God bless!
Torie

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Reply with quote  #143 
THanks for the update, Sotired.  Really, really glad you are able to get a bit of well-deserved calm.  What a crazy merry-go-round it has been.

Please be sure to keep us posted.  I think of you so often.  xx

-Torie

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martican

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Reply with quote  #144 
Sotired, I always follow your story, and feel for you. I am glad you keep coming here, and let us know that things are moving. Good strategy to enjoy the serenity in the house, and focus on your own care. It will be a good learning experience for your D to live on her own. Wishing you all the best! xx
Sotired

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Reply with quote  #145 
It’s been a while since I posted here, I just have been struggling with some things.
Unfortunately the seizure my d had was not the one and only but has been followed by several more. She has had a hospital admission since I last wrote.she has been put on ant seizure meds and also is now on morphine for pain.she has been diagnosed with epilepsy.
Because she lives away from us I didn’t realise that she had significant memory lapses.she was coming home for a night or two last week,well she has now been here for 4 nights and it has been shocking to see what is either the result of an accidental continuation of overdosing herself on morphine-thinking it’s been four hours,but instead it’s been half an hour- or a reaction between the meds.
Initially she seemed barely conscious.no idea what day it was or what time of day.still insisted on doing her own medication.after watching her for two days my h and I decided she was too out of it to do that.if you have ever tried to get a drunk person or a high person to see sense,you know how much arguing from my d happened at this point...a lot.all slurred and mostly unintelligible,
But we persevered and now my h and I have her drugs in our room- particularly the morphine-and already I am seeing a difference.we did take her to the doc on Friday but the doctor seemed to be ok with things,thought it was a side effect and would wear off.because my d has been managing her meds for a while and has been so responsible it really took this active observation to see what could be potentially going wrong.
My h is in bits about it all but trying so hard to keep it all together.im a bit worried she might be having some minor hallucinations as she just called to him to do something about the frogs outside...there are no frogs here.
The other kids are really struggling with this, they have never seen their sister in this state before and although I have,it has never lasted this long.so we are frightened but trying to see the light-today she had a shower and changed her clothes for the first time since coming home.im a bit of a stickler for clean bodies,clean clothes,so that will give you some indication how worried I’ve been that today was the first day I said that had to happen.
I didn’t expect epilepsy.i don’t really know what to do with the information.she wants to move back to her flat but has agreed to wait until she is better before she does.
Meanwhile we have had a crazy busy term and I have been sick or injured for half of it.my middle d had her school ball so there was a lot of prep for that (senior prom for my American friends).smallboy has had school trips,one overnight for two nights.so nothing has happened in a vacuum and I have dropped some balls because of it.but weirdly,I’m not beating myself up,but just accepting that I’m only human and I’m just doing the best I can.all I can do.when illnesses are long term or evolving into other things you just have to roll with it because otherwise you’d go mad with all the what if’s.
School holidays here so have that on top of everything.but this too will pass.and it’s ok if this doesn’t get read but just fades away.ive been here a long time and people get tired,but I want you to know that I know I will be ok.i read on here but don’t comment much as I don’t have as much to say for others situations.but i think of all of us as we move through this.

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Sotired42
Torie

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Reply with quote  #146 
Seizures?  Epilepsy?  Morphine?  And illness and injury for you on top of all that?  Oh my gosh SoTired, I wish I could wrap my arms around you and make you a pot roast.  I can't believe the Fates just come up with more and more to throw at you and your family.  I'm so very sorry life won't cut you a break, but I really appreciate your taking the time to fill us in on your challenges.  I hope you have help on the ground to carry at least a bit of the load.

THinking of you.  Hugs xx

-Torie

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Kali

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Reply with quote  #147 
Hi SoTired,

I am so sorry that things continue to be a struggle for your daughter and your family and your path is so difficult. I wish I could wave a magic wand and make it all go away for your family.
Sending you a big hug and wishes for comfort although I know that is of little practical help in this situation.

Can she get a second opinion on pain management and can you ask to have her weaned off the morphine? It just doesn't sound, from what you are describing, as though she is doing well on it and it is a very addictive drug.

warmly,

Kali


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scaredmom

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Reply with quote  #148 
Sotired, 

You all have been through so much. I think you are a very strong person and I am so sorry for what has been going on. My thoughts are with you and your family. 
XXX
Tali97

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Reply with quote  #149 
Hi SoTired,

Thinking of You {{{Hugs}}}

It is totally unbelieve able everything your daughter and your family are going through. Only though is have you had someone review her drugs for interactions? 
I see that there can be positive interactions https://www.sciencedaily.com/releases/2014/09/140915153613.htm

Take care of yourself.

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18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
needhelp

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Reply with quote  #150 
Big hugs to you, Sotired. I am so sorry for your pain,and for your daughter’s suffering. Thank you for being so brave, in the way you have shared this desperately challenging part of your family’s journey. I truly am so very sorry.
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