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Hebrides

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Reply with quote  #126 
Dear Floating, all I can do is echo what others have said already - I am SO sorry that there are yet more hurdles to be overcome just when you thought you had made it, but it WILL happen. 

The priorities for now, if at all possible, are trying to keep your d on the medical side, and allowing yourself time to breathe, rest, sleep (if you can, rest if you can't). You have done everything you could possibly have done - and now you must take care of yourself. You are going to need all your strength for the next stage of this journey - you are one amazing, devoted mum.

Sending love and a big hug.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mumto3

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Reply with quote  #127 
Sending hugs and strength for you and your D.
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worried mom
sk8r31

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Reply with quote  #128 
You, your d, & your whole family are in my thoughts & prayers.

You are so close...try to keep your 'eye on the prize', and rest as best you can.

Sending hugs,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
floating

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Reply with quote  #129 
Quote:
Originally Posted by Scappy_uk
Floating, if you can find the strength, please contact Bethlem again and ask to speak to Lynn St Louis. She is in charge and is great. Christine does not have the power to make these decisions.



scrappy I am too scared to scared to ring again........christine was not pleasant and the response mentally drained me and took it's toll on me. Have not even told my girls about it as do not want to dash their spirits

xxx

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floating

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Reply with quote  #130 
Quote:
Originally Posted by sk8r31
You, your d, & your whole family are in my thoughts & prayers.

You are so close...try to keep your 'eye on the prize', and rest as best you can.

Sending hugs,
sk8r31


Thank you xxx

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floating

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Reply with quote  #131 
mumto3, toothfairy, hebrides, ookoo, ihateED, torie, Melstev, ihateEDwithapassion, sotired thank you for messages helped me keep going for a few days

Went to the allotment Saturday.....a place I love and my little bit of heaven!!
Also painted the lower end of the house

Kept busy so that helped.still have sleeping issues and can only nod off for approx 3 hours....hopefully this resolves itself when life improves

xx hugs

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hyacinth

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Reply with quote  #132 
I remember someone once posted the email address of Janet Treasure, but can't find it now. Can anyone else find it? Please ignore if not appropriate, but do you think one or more of us could email her with a short update on this situation on your behalf? You must be so utterly exhausted, physically and mentally - it is not fair that you have been put through so much.
K63

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Reply with quote  #133 
Hi Floating , thinking of you I understand how awful it is when you feeling so exhausted and get someone so unhelpful at the other end of a phone. It may well be worth phoning and asking for the other person who scrappy mentioned. While we were waiting for a bed in rehabilitation unit for my husband I spoke to one very helpful person she was amazing and always told me what was happening as we were waiting always gave me a clear indication on what was happening and how soon the bed would become available , on other occasions I got speaking to another person who just said the hospital will be made aware when bed is available .
I hope you d is doing ok and the nutrition is going in and is helping and she will be in a better place when she gets the bed . It's the waiting and the unknown that's terrible.
Try to get rest was happy to hear you went to allotment over weekend .

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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. 
Trytrytry

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Reply with quote  #134 
I can understand the way you feel, you dread calling again because you don't want to go through the mentally preparing yourself, making the call takes guts, and these people are supposed to be helpful and they just tell you to go away, it is demoralising and it is so hard to pick that phone up again.

I am sure there are some people here who might know the right names to speak to? If this Christine always answers the phone, she has to have a lunch break, try then or if you can't handle speaking to her, I understand and just hang up.
Getting a GP to call will of course be better than you. If instead of asking the gp to make a blind call is it possible to get a name of someone who can make decisions and get their direct number? If you make an appt to see GP and have a name and number of someone who you know has decision making power it is much harder for a GP to say no when you are sitting in his consult room with name and no. In hand plus write down all the symptoms s your d has so he doesn't forget.

If you can get the courage to call, and get to speak to someone useful - I don't know how it works in the uk but I would ask closed questions like when is the next expected discharge? Where is your d on the wait list, ask how they triage, you don't need to lie, your d sounds very ill. I understand they can't give 100% guarantee answers as someone unexpected may turn up but say you will be calling everyday asking when the next discharge are and where d is on the list and why isn't she at the top?

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I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
Scappy_uk

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Reply with quote  #135 
I can understand why you don't want to phone again, but I promise you will get a much nicer response even if nohing can be done to speed things up. X
mjkz

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Reply with quote  #136 
Quote:
Went to the allotment Saturday.....a place I love and my little bit of heaven!!
Also painted the lower end of the house

Kept busy so that helped.still have sleeping issues and can only nod off for approx 3 hours....hopefully this resolves itself when life improves


So glad you took time out for yourself.  This journey you have been on has had so many ups and downs that you just have to take time out to reconnect and recuperate.

Quote:
I can understand why you don't want to phone again, but I promise you will get a much nicer response even if nohing can be done to speed things up.


Floating, you can do this.  You faced the psychiatrist that was going to only give your daughter palliative care and you won.  Hopefully this will be the last major hurdle!!!
Morgana

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Reply with quote  #137 
What a rollercoaster. I am so sorry you are up against such a hurdle now. This is so unfair, such a huge struggle to get the care your d and your family deserves. Please make the phonecall as suggested above. We are all behind you and as hard as it is, we know you can do it. Don't be hard on yourself, you are a warrior and even warriors need to rest to gather strength before continuing to victory. Always thinking of you xx 
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15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
floating

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Reply with quote  #138 
I am stuck in a never ending nightmare

We have no hope of a bed in near future as team phoned

D lost bit of weigh past 10 days due to tube pulling

Her state is the worst I have seen........she just cannot hang on much longer...screaming, high distress and very negative talk no matter how much hope we continually instill

My health is slipping further.......not sure how much more she or the family can take....

I know beds in NHS are hard to come by and 5 weeks appears not a longtime to wait but this wait has been 8 months for specialised care for us

Totally heartbreaking, shattering and what more can I say.........

Hoping by now to have a little good news to share but not meant to be yet...........

Hope you are all hanging in there and making progress

xxxx

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Bottle

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Reply with quote  #139 
I wish we could make it happen RIGHT NOW for you Floating. You will get there. Someone once told me at the worst time to try and just punctuate each half hour with something even if it's just looking out of the windows. It did help me oddly. The time will tick away and then before you know it the bed will be available and you will be here.

Hugs xx

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Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
Torie

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Reply with quote  #140 
Damn.

I don't swear much, but hey, this is just over the top. Your d is incredibly lucky to have you, but really, you do need to take care of yourself for her sake even if you can't do it for your own sake.

I will keep sending positive thoughts your way, dear Floating. Surely a bed will come through one of these days - here's hoping it is sooner rather than later.

Hang in there. 

Hugs,

-Torie


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

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Reply with quote  #141 
Hi floating,

Desperately trying to send you some good vibes and strength through the atmosphere. Can you feel them? Darn.

Wish we could do more. Sending a virtual hug anyway.

Thinking of you,
D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
iHateED

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Reply with quote  #142 
Oh I'm so sorry.  Please let us know if there is anything we can do to help you, anyone we can email for you?   What about the radio station?  Should we get them involved again?  He said he had friends in the NHS. 

Hang in there and please take care of yourself as best you can.  Sending a big hug your way! 
NELLY_UK

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Reply with quote  #143 
Hi Floating
I am also lost for words for you. I am always a cynic when it comes to ed treatment having 'received' some of the worst as well.
You have no choice but to keep going. I hope a bed is available soon. The state of the uk system is terrible with such a lack of beds.
Keep phoning them.
Keep your D going.
Lots of balls to juggle whilst spinning plates.
I am resigned to a life of ed because early treatment just didnt happen. Its beyond frustrating.
You just dont know what life will throw at you.
Be kind to yourself, you are doing your best xxxx

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
floating

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Reply with quote  #144 
Thank you toothfairy xx
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iHateED

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Reply with quote  #145 
Thinking of you floating and passing along my favorite quote.   I said this every night to myself in the worst of days. 

“Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.”
Mary Anne Radmacher
floating

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Reply with quote  #146 
This is going to sound random but I just want to say how much I appreciate a special woman my mum I can't even begin to express how much I love you mum

I've put your life through complete hell the last few years and you've never once blamed me for it when it's clearly my own fault you've stuck by me every single day and your constantly my shoulder to cry on.

without you by my side I definitely would not be writing this right now I'd be in the ground in some cemetery it sounds m
orbid but without you that would of been my reality. I'll never be able to explain how much I appreciate your love and maybe one day I'll be that rock for you. I'm sorry for being so selfish .I genuinely am, the only good thing that came out of this is that we have a better relationship than before. anyway before this gets really sad [frown] I just wanna say sorry and thank you for everything Mum.....

Just wanted to pop on and share the above (blue writing) what my daughter posted on facebook this evening, bless her. Not responded to it yet as need more time tomorrow to fully find the words.........She also put of lots of pictures of us in happier times,,,,,,,
This illness is so blinking cruel and awful it breaks my heart. As you may have guessed she still has not got a specialised bed, If anyone knows Janet treasure you may drop her a hint!!!! come on Janet please .......... poor D desperately needs to be transfered, As I cycle to work each morning I pray to God to answer my prayer and give us that bed, Been approx 7 weeks hopefully it will be soon

Keep fighting the fight all and thanks for support xxxx

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admum

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Reply with quote  #147 
So beautiful. Hugs and hope that your D soon gets a bed.
Torie

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Reply with quote  #148 
Oh my gosh, Floating, what a whirlwind of emotions you must be going through! Such a beautiful post from your precious d - extraordinary that someone so ill could find the wherewithal to put that together. I hope you're able to put your feet up and savor it ...

Thinking of you. 

Hugs,

-Torie

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

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Reply with quote  #149 
What a special family you have, all of them. I really HATE what Ed does to these beautiful, sensitive kids.

Praying for that bed,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Penny31

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Reply with quote  #150 
Really hoping you get that bed soon. What a wonderful young woman your daughter is, to be able to write that despite being so ill. 
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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
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