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Torie

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Reply with quote  #101 
Three gold stars back at you, sotired. Definitely hero's work you have been doing all this time ... keep on keeping on.

xxx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
K63

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Reply with quote  #102 
Hi sotired, we can only hope that some day something will work or some therapist they will make the connection with will really help them on their journey. Will she get weekly or twice weekly sessions in reds. I have bought the pre and pro bionics in one tablet and d is taking them I have also bought zinc and omega fish oil which she isn't happy to take at the moment I am working on it. Hope you are feeling a little better sine you started course of iron . Keep going warm wishes.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Sotired

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Reply with quote  #103 
Hi linda2,Torie and k63,
I don't think I've ever written down in full the list of what we have tried before...my word... it's heartbreaking.well,for me.ds anxiety got in the way once more last night and though she tried to battle through it by the time I left to take small boy to a friend of mines Halloween party,she was shut in her room,refusing to eat.im sure I should have sat there with her but I knew I couldn't be patient as I was already in pain from my endo so it was best that I left my h to it.my other d has her friends over still...turns out I agreed to an overnight party here,I really gotta start paying attention.she only has a few friends though so was only a couple sleeping over,one went home.apparently my an d ate wontons! Without me there to fight with she must have won that battle.but I'm pretty sure she is purging.she has definite signs of weight loss now, it's awful.i just wish I could find a way through this, I want to help her but she refuses any help and just gets aggressive.the ed always picks a time when I need to be sorting stuff for the other kids to be awful too.this whole scenario feels ridiculous and stupid and I know it's not right but I feel helpless to fix it and I'm not used to that.this is not what I wanted for her life or mine if I'm honest.i got two slightly different messages from you Linda,the one here must have been edited,the one in my email inbox was longer!another three gold stars today for surviving Halloween.christmas to go...

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Torie

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Reply with quote  #104 
And don't forget the three gold stars for surviving small boy's party.

xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Sotired

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Reply with quote  #105 
My star chart is building up...surely soon I'm due a treat [smile][smile]
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Sotired42
PeachdreamNZ

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Reply with quote  #106 
Gotta love it when they get you to agree with something when you are too tired and stressed or distracted to remember it later.  I get caught out a lot on that one with older d telling me she has got my permission while I was trying to do stuff for an d.  It appears my multi tasking skills have deteriorated of late.  I like that idea of having a star chart for yourself sotired, even if it was just in jest.  I feel so useless most days when I find getting out of bed and driving the kids to and from school an achievement and my husband gives me the rolling eyes while he wonders why the house work is not done and the dinner not cooked.  Maybe I need a star chart myself!  We have had a couple of meltdowns here this week with ds motivation to recover faltering and her wanting to be 'thin again'. Its just so flippin heart breaking when we have had 8 weeks since the last hospitalisation and she has been so motivated to recover.  I just don't know if I could handle this all going pear shape so soon. I still feel so empty from the last 9 months down the rabbit hole.  I don't know how you do it sotired, but the way you keep pushing through this awfulness is completely amazing and inspires me to just putting one foot in front of the other each day.  Hope the endo settles pronto and you get some rest!  Take care.
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D age 14 dx with RAN and depression April 2015.  3 IP visits from June to August 2015. Now above wr but still struggling with strong anorexic thoughts and depression.
Sotired

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Reply with quote  #107 
Really?i struggle with the idea I'm an inspiration to anyone,except in the area of getting things wrong!i tend to assume people are just being kind.the star chart is my mental concept of getting through things I find hard(practically everything at the moment,up to and including getting out of bed!)have just given myself another 3 stars for folding the washing and getting all the decorations taken down and boxed up.
I'm sorry to hear your d is struggling right now but I have lots of hope for you that you and she will get through this.not easily or perfectly but you know she can do this and you help her more than you think you do.
Maybe our theme song for the coming week should be row row row your boat....throw ed overboard and listen to it scream...Halloween might haven got to me a bit there...[wink]

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Sotired42
Linda2

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Reply with quote  #108 
Hi Sotired,

In post 104 you said:
i got two slightly different messages from you Linda,the one here must have been edited,the one in my email inbox was longer!

Sorry if I have confused you. I was probably trying not to put people off by giving too much advise.

Anyway please let me know or email me [smile] 

Linda

Sotired

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Reply with quote  #109 
Nah,she's right mate.was puzzled for a minute but figured that the one in my inbox was longer cause you had edited it.ugh,just realised Monday brings me no relief as an d now just hangs around the house.i miss my alone time.another week or two and I can get her to sort a cv.then she will bring the 'it just raises my (her)anxiety levels ,I should just be left alone 'argument up.
Feels mean but I rely on my alone time to cope with life's many challenges.have therapy tomorrow as well but as d will sit at the top of the stairs it will be hopeless.anyway,all they want to hear is all the good stuff.they act like I'm self pitying if I say this is a big struggle.perhaps I am.i just need a holiday from my life.well,don't we all,eh?

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Elena

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Reply with quote  #110 
Oh yes, a holiday from our lives would be sooo nice! My h and I are just trying to get out for one evening, not for a meal as we would just talk about the kids, but to a movie or a play, pure escapism, but then we have to find something we want to see and organise someone to supervise the kids, this was all meant to get easier at this stage with my eldest d being old enough to babysit her sisters, but as she is right now, she is the one who needs supervision. Another friend said 'why don't you get away for a weekend?' and I just laughed, d would not eat. Maybe I could just swap lives with one of my friends for a few days... but not that one.....or that one.... maybe we all have troubles, but ED troubles last a long time, and are damn scary.

I know how you feel Sotired, about the ED just waiting for you to be busy organising stuff for our other kids to start running amok. Any distraction and it is in there creating trouble. I think that is why EDs are so exhausting, we just have to keep on going, and going, and going...

Take care!
Torie

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Reply with quote  #111 
Sotired, Have you gotten a second opinion about the need to postpone your surgery until you lose weight? Endo is so debilitating (to say nothing of the painful) - I feel so bad for you having to deal with that on top of everything else. Perhaps another doc would go ahead with it sooner?

xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Sotired

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Reply with quote  #112 
Oh if only eh elena?though I say that but we are actually going out to dinner with friends on wed,I am already rehearsing other topics so we don't spend the whole time talking about anorexia.
I could find another surgeon but I really trust mine.he has done all my other surgeries and actually delivered small boy so he knows me.its our summer now so will be tricky for me to do what needs to be done but I really need to now.i will get this sorted Torie...have you tried making the Jell-O shots yet?[smile]

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Elena

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Reply with quote  #113 
Ah yes, the age old problem, how to not talk about AN. I seem to have forgotten how to do small talk. Rehearsing other topics of conversation is a good idea, but it is still a struggle. It would be nice to just be able to forget all about EDs for a bit. Good luck with your own weight, I've put on over the last few months and it makes it hard...sigh!
Sotired

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Reply with quote  #114 
Well I make no promises about no an talk,just plan to do my best there[wink].had interesting therapy session with my therapist so some of the reasons I do things the way way I do are starting to make more sense.and then as I was talking with small boys occupational therapist at his session today some of the dyspraxia things that I struggle with that he does too also started to make more sense.so today was a Useful Day.
And I had a tiny success with d today getting her to have a small yogurt when she was going to have nothing for dinner.i am trying really hard to stay matter of fact about it.also started her on the pre/probiotics today.hopefully in about six weeks if she hasn't purged them up,they might help a bit.its a bit tiring being constantly out of the house so that I don't get into fights with her but it's an ok solution for now.and small by had a good day at school so all in all today was good.hope everyone's start to the week is going ok?

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Sotired42
Sotired

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Reply with quote  #115 
Discharged from thrive now.reds starts next week.made d make her own doc appt and she sorted out her own bloods.she has made it very clear that we will not be involved in her treatment at reds.we heard back from the baking course so we are on to the next step there,an interview next week.she refused dinner but ate a yogurt.then my h and I went out for dinner with friends-and NO children.had a lovely couple of hours out and managed lots of different topics as well as talking about how our ds anorexia affects us now.so nice to be out,doing a normal middle aged thing.i appear to have agreed to bake 5 dozen things for the school fair so need to talk to the lady involved as I don't remember offering that!already helping sort books for 4 hours on Friday...think my name might be 'sucker'.had to pick small boy up from school at lunch as he was having meltdowns.what is normal?is this normal life?i hate watching my d do this but I can't do anything else for her at this point.i just have to hope that at some point in time she gets sick of being anorexic and fights to get better.at that point I can step in again.until then all we can do is keep her as safe as we can.i miss feeling safe inside my head,where I could be one of the people who believed if I just tried hard enough I could fix this.i don't think I've explained that well but I just feel that my illusions and rainbows are gone.i had no idea what this would do to us,I had no idea what mental health services were like in NZ.this continues to be a hard journey and 9months after ip/residential I feel like in many ways it's just more of the same behaviours from d.and the other parts of life still go on,they don't disappear just because of anorexia.sigh.im rambling...just hard I guess...
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Sotired42
JustFlippinEatItNZ

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Reply with quote  #116 
I know what you mean re this is the new normal...a workmate asked how d is yesterday, and I told her "not so good, about 1kg away from hospital". She commented that I was handling is surprisingly calmly, and I replied that after a year of this I'm kinda used to it so it just bounces right off...I just focus on the next thing that needs to be done.
(I didn't tell her about the meds I'm on that help things stay on the surface somewhat, rather than crippling me with anxiety!)

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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
louise4nz

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Reply with quote  #117 
Hello, I have just read through your posts, wow what a journey you have been on and are still on. We too have a 17 year old daughter with AN, she has relapsed following discharge from FBT at REDS in June 2015. We had our first appointment back there last week and go again tomorrow. Reading your posts I feel like I am holding too many threats over her head, am I better to think of time out of the house as distraction? I to get the knots in my tummy and feel at a loss, we too have a crazy life with so many needs I feel at breaking point. 4 children, 2 with Marfan Syndrome(which I also have), another daughter with Down Syndrome and Miss 17 with AN. I think it great you are managing to get out and about.
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Louise

D 17years with AN since April 2014, FBT discharged June 2015, Relapsed Oct 2015.
Sotired

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Reply with quote  #118 
Hi jfei and louisenz,
I guess that's the thing though isn't jfei.in a sense you numb yourself to it a bit because it's hard to cope otherwise.so will you wait til your d drops to 41 kg(and that will be with waterloading if she's anything like mine is at the thought of hospital)and then take her to starship?i can't believe she will sit an exam at that weight,my d would be catatonic.think that once the exam is done if you are gonna wait,once it's done,off to starship.she needs an ekg and a bone density scan at the very least.you worry too much about getting turned away,you won't.tell her that's the deal,exam then starship.if it's all you've got then use it.
Hi louise4nz,every time I think I have it hard someone like you comes along and shows me that other people are doing it tougher than me.you must be an incredibly strong woman to hold it all together the way you do.have you accessed all the help you are entitled to?have you got your d on the disability benefit to help offset costs of travel?you haven't written your ds weight and state so I am unsure what she would be best to do.my d has proved to be uber resistant to any treatment and no matter what anyone says,you can't force them to eat at 17,not without a degree of compliance.my d would just get up from the table and lie on the couch and sleep rather than eat.letting her have some semblance of a life is working better in our situation.other people are able to achieve things on here that I cannot,no matter how hard I try.can I ask (and you don't have to answer if you don't want to),what is Marfan syndrome?i am sorry to be ignorant of this condition.how is your Down syndrome d coping with her sisters anorexia?is she younger or older?my 8 year old ASD boy can make me feel ill with his knowledge of anorexia.and has no compunction in bringing it into conversation,or using it to get more food for himself !
It was nice to go out to dinner with friends,although we have continued trying to catch up with friends we have definitely struggled.but they are much more support to me than family so very well worth it[smile]

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Sotired42
JustFlippinEatItNZ

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Reply with quote  #119 
Lousie4 - we crossed paths with you at Starship for a few days I think - might have been after a Miley Cyrus concert? Ah, those were the days, back when I thought anorexia was something that you go to hospital for a few weeks for and then you're fixed! Sad to hear you're battling with it again. Hopefully it's just a blip and she'll get back on track - there's nothing wrong with being staunch with consequences - the illness will take a mile if you give it an inch. Lately I've been insisting on d staying home unless she eats all the food I gave her the day before - hasn't worked amazingly well, but she's getting the picture that I mean what I say. Time out of the house is great for her, but not unless the food's going in - otherwise it's just pointless distraction.
Actually, sotired's d was in starship as well that time, but in the big ward. I must say - these girls have a seriously stubborn streak!

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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
Sotired

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Reply with quote  #120 
Gosh was it that admission!i remember a girl who was super into miley cyrus.if it was back when my d was still allowed in room 1 before she was deemed a bad influence on the others,that was a while ago.we were allowed in the big room the first 8 admissions I think before we were put in isolation.i was always a bit afraid to talk to people after a while,I didn't want them to lose hope.i never want anyone to lose their hope because of our situation,every child is different.keeping our d in the house would actually increase her anxiety so I wouldn't do that any more to her.besides which,it didn't work.she is better out and about seeing that life is worth it.we are nearly two years in so that might make a difference too.if we didn't give her some freedom she would leave and then I would be more scared as she isn't street smart at all.you can take away every privilege but why would they want to live then?there have to be some lights in the tunnel to get through to the other side I think.and unless you tie them down(still illegal I'm pretty sure)you can't stop them just walking out if they want to anyway.better to know where they are going I think.like I said,we are in a different place now.its not happier but it's certainly different.we have no leverage and only our love to support her.we tried leverage but it just backfires on us every time so we do the dolphin approach and accept that our life is never going to be great,it's just going to be manageable really.we just try to have some good times and stay a bit braced for the next bad time.not an easy way to live and I certainly don't recommend it.if you would like to meet up for coffee some time Louise just post here and I will sort something[smile]we all need to have a vent sometimes [smile]
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JustFlippinEatItNZ

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Reply with quote  #121 
It is definitely hard standing by watching a daughter starve and having no control over the situation - possibly harder than doing fbt - although when the fbt isn't working it's kinda the same. So frustrating not being able to step in and sort it. 
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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
louise4nz

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Reply with quote  #122 
Hello again, Yes I thought our last admission was with you. I put it together last night. Bloody Miley, yes we used that as a carrot and it work literally until the concert then it was a total stoppage of any nutrition. Ms 17 I think has what they call aytipical AN, she has always been what is considered a healthy BMI range but what we know to be a complete load of rubbish, as periods stopped, mind was going crazy, depressed, food refusal etc etc, her body was not meant to be that weight. She would end up in hospital due to a completely stopping eating and drinking. This time it is the same drill she actually is an ok weight but her mind is being very cruel to her, an hour to get a banana in yesterday, sigh. That was breakfast the rest of the day went better.

JustFlippinEatItNZ were we in the same room as you??? If so I am so sad to hear the journey is on-going [frown]

Ugh REDS today, are your girls on FBT or Adult services? I don't want the total stress of FBT again, the guilt and pressure.

Sotired, Marfan Syndrome is a genetic condition, it affects the heart, skeletal system, eyes, connective tissues. Most people with it are tall, I am 6ft and my son is 6ft9in, Miss 10 is already 173cm. My daughter with Down Syndrome is younger 14 years old. She just hugs Ms 17 and says come on brain let her eat or you can do it we love you. She is very sweet. Sadly Ms 17 can find this a bit much and will tell her to get lost but we have systems in place. We are so hoping this is a glitch bought on by exams.

Ms 17 is depressed and we know medication really helps her but she is claiming it doesn't and is refusing to take any, any advice on this?





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Louise

D 17years with AN since April 2014, FBT discharged June 2015, Relapsed Oct 2015.
Sotired

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Reply with quote  #123 
Meds are the one thing we have managed to keep in place.how?i might have been really honest with her there and said if she's not on them she's too hard for me to deal with.it may be that it was when we were in hospital 3months so she got used to taking the Meds and then she was residential for 6months so again that probably helped.4 of us are on Meds so that may have made a difference,all I can say is when you meet with her team talk about it then.it took several weeks of persistence to get my d on Meds.thankyou for explaining Marfan for me,I'm guessing that might lead to joint pain?the interesting thing with your downs girl is that she understands better than her sister does about the illness.same with my ASD boy.sigh.just had to take the rabbit in for unofficial show and tell.it was the only way to get him to school so means I missed my first gym class as then I had to walk back with the rabbit.and of course he insisted the day before the school fair.my an d is supposed to come in and help.just trying to keep her busy really.
I wish with all my heart jfei that I could have made FBT work.this way of living is far from ideal.it is what it is though.at least my d is eating right now.nothing frightens me more than when she stops eating and drinking altogether.

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Elena

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Reply with quote  #124 
I'm getting the idea that although fbt is really tough, that when fbt fails it is much scarier and frustrating, as you probably feel that there is not much you can do. I get that. That makes me more motivated, fbt has worked for us, but just now for a variety of reasons we are slipping back, so I need to get back on the fbt bandwagon.

I'm glad your d is eating something Sotired, even if it isn't enough, anything is better than nothing. I can just imagine you and small boy taking the rabbit in for show and tell! I hope the teacher appreciated the effort you were going to.
JustFlippinEatItNZ

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Reply with quote  #125 
I'm enjoying the picture in my head of you walking along the road with the rabbit :-)
One of D's current distractions is going for a walk up the road holding our rabbit. I sometimes do it too - I feel a bit odd but get lots of smiles from passers by! I feel more weird  grabbing handfuls of grass from other people's verges and walking home with them. 

Lousie4 - yup, same room. I met your 14 yr old back then too - totally gorgeous and a little ray of sunshine. Tell E from me to be nice to her!

I think meds are a good idea - fluoxetine doesn't seem to make much diff but apparently it needs a bit of weight before it can work. The olanzapine makes her sleepy and she hates it and doesn't think it dulls the AN thoughts at all. Definitely makes the evenings calmer. The only way we got her to take them was because at Starship and REDS the psych told her to, and we just hope it doesn't occur to her to stop taking them - I may have told her that stopping taking them without medical advice and management is dangerous :-)

Seems like they all have similarities but lots of different styles of having AN as well. My D manages to function well - lots of going out and high grades at school, obs always fine, but her thoughts are messed up and her weight is super-low. 

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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
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