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toothfairy

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Reply with quote  #1101 
So tired, 
Will you ever get a break??
I would not be able to get up in the mornings...
You are the queen of the Warriors....uugghh so sorry

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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 strong recovery, (Phase 3 ) 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.
Torie

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Reply with quote  #1102 
Quote:
Originally Posted by toothfairy
You are the queen of the Warriors


Agree.  Do you think if we started a petition, we could get the mods to change her user name?

Hang in there, Sotired.   We're in awe of your spirit, and your generosity in helping others with their struggles.  Wish I could know you in person. xx

-Torie

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

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Reply with quote  #1103 
LOL, MODS-see this!!!User name change [wink][wink][wink][wink]
Sotired, If ever I am in your neck of the woods...... You are the first person that I want to meet.....xxx

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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 strong recovery, (Phase 3 ) 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.
Sotired

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Reply with quote  #1104 
You would probs be very disappointed Torie-I'm just an ordinary middle aged woman with pink hair currently😁.queen of the warriors sounds lovely toothfairy,if only I had the energy to fight.although I love the fact that we have the option of public or private,the private people still have to use some public services.if the public services won't come tothe table then I'm where I am now.stuck.
I am sad for my d, but I have to be realistic too.youdont have over twenty admissions for anorexia and have to be fed constantly by tube as a normal part of treatment-unless you have to be mha .that doesn't happen to everyone affected by anorexia.
I read a book once called"why do bad things happen to good people?".
The thing that stuck out for me was that when you ask the question "why me?" You then have to accept that the answer is "why not you?".
You don't get exemptions -because being good is what you are supposed to be in the first place.
And yeah, it gets me down,absolutely.but then I remember that at the moment she is happy,mentally she is doing well,my other kids are doing ok,my h and I can still laugh together and I still have good mates from everywhere-real life and online.theres nothing worse than someone who just gets more and more bitter-I had to let someone go in my life this year because she was happiest when miserable.i don't want to be that person-even though life is much harder than I want it to be.
When I had smallboys appointment with his paediatrician about a year after his first and second diagnoses he said "you are relentless in seeing your sons positives aren't you?"
Well,duh.if I couldn't focus on my sons successes sometimes it would get me down.(more than it does).
But I like to think that most people are capable of more than they think-I see it here time and again. Everyone has stuff going on outside the anorexia and we manage because we have to.we don't give ourselves that choice of opting out.mostly we try to forget that that's even an option .
Sorry,it's a public holiday here and so I actually have time to remember some philosophy.
Are we heroes?i always struggle with that concept.i do think that we all deserve the love and care that we give to others.accolades are lovely too,but it's the caring here that I love the most.(and the suggestions.they rock too).
Melstev-as someone who is finally getting to see some rewards after a ten year year battle, myhat goes off to you.perseverance and love have got you and your d here.
Oh and obviously if you're ever near my neck of the woods-as far from trump as it's possible to get-you are welcome to stop in[smile]


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Sotired42
joysomeday

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Reply with quote  #1105 
Sotired,

I read often, post less, but follow certain members because I worry, and appreciate the wisdom, insight gained by hard fought battles.  You have my admiration and my sympathy.  Your most recent post just shows your strength and resilience.  You are a remarkable mom and woman and don't ever forget it.  Your post is a positive reminder to see the positives and embrace them-and I thank you for the reminder today.

 I am writing to forward to you a recent study that I just saw the other day. I thought it might be of interest and provide hope for another day, perhaps at some point another option. HOping I can attach it here (tech savvy I am not)

http://www.hopkinsmedicine.org/news/articles/myotomy-offers-relief-for-some-gastroparesis-patients?utm_medium=social&utm_source=Facebook&utm_campaign=GI&utm_content=InsideTract#.WTQ_emMDGmg.email

Meanwhile, I agree with the others, perhaps its time for a new moniker!  Not that your still not sotired, but one that reflects the warrior and advocacy mode for your children and family despite being sotired.  


Sotired

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Reply with quote  #1106 
Just a super quick note-d has stayed between 45-46kg a whole month!the new med for nausea is working thank goodness.d has a job trial next Monday,just for a few hours a week and I'm hoping she gets it-she has come so far and is so deserving of some good luck finally.
Smallboy is fully refed and middle d is doing much better,gained back some much needed kgs before she fell down the rabbit hole.
I have surgery on my foot in a month ,hoping it will take away some of the pain.
I think we are finally doing ok (touch wood,everyone,right now [smile] )

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Sotired42
Kali

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Reply with quote  #1107 
Hi SoTired,

Great news that your d. has been able to stay at 45-46 kg for a month! I hope this is the start of an upward trend for her and being able to maintain moving forward! So glad to hear that the anti-nausea med is working!!!!!

I'm knocking on wood as we would say here! 
Hope your foot surgery goes well and helps.

Best wishes,

Kali

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melstevUK

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Reply with quote  #1108 
SoTired,

I am always so so happy when things are going a bit better for you.  Your journey has been so horrendous and you have been tested more than most.  I really am delighted that for the time being you are 'finally doing OK'.  Long may it last!

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Believe you can and you're halfway there.
Theodore Roosevelt.
Sotired

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Reply with quote  #1109 
You guys rock.thankyou for your lovely words and thoughts.this place helped me so much-just keeping me more or less sane for a start.😁I'm enjoying having the stars in alignment for once and being able too work on myself.
On that note-it isn't my d who struggles with talking about it-its me.whenever she brings it up I struggle as she often remembers inaccurately and it's hard for me to let that go.sigh.one learning step at a time I guess

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Sotired42
deenl

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Reply with quote  #1110 
HI sotired,

So glad that you are having a less intense period of your lives. Really hope it continues into a rut -  you could do being stuck in a rut, as in, 'Yeah, nothing strange, just toddling along. Ya know, no news is good news' sort of a rut.

You have done amazing things.

Warm wishes,
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.
toothfairy

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Reply with quote  #1111 
Sotired, wishing you peace and happiness from Dublin,
You are amazing x

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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 strong recovery, (Phase 3 ) 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.
Torie

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Reply with quote  #1112 
Sotired, I take my hat off to you for all you have managed these years.  Such a hard hard journey - too too much.  You are such a fab role model for your kids (and everyone else).  xx

-Torie

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

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Reply with quote  #1113 
Awesome sotired.  Never thought we'd get there did we?  You may need to start looking at a new name [cool]
Sotired

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Reply with quote  #1114 
D starts a job on Friday everyone!!
Nine hours a week-3 hour shifts,3times a week.
remember when I was frightened she wouldn't see out the week?for now I can shelve my worry that her life will be short-for now I can love that her life is so happy and she will be a 'working woman'(her words).
This is what I hoped she would live to experience and there were so many times I thought she wouldn't.all those admissions,all the self harm,the suicide attempts,the violence...then the gastroparesis admissions,sitting in the ADU thinking this was the time her poor heart would give out.so much fear on my part that we wouldn't get through this.
My daughter is learning to fly finally and I could not be more proud of her.she is returning to me,yes a little broken and battlescarred on the outside-her tube is just a part of her face at this point-her tattoos hide scars-but I never thought we could have this.this is a gift and I am so bloody proud and happy for her.
We may have lost some battles but in the end I feel like we have won our war.
MJ-I really wasn't sure we would,but look how far our daughters have come.just proves that you have to have faith in the face of bad odds.
Torie,tooth fairy and deenl,
Your good wishes,good advice and support keep me strong when I start to doubt.
I'm a happy woman today 😊

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Sotired42
tina72

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Reply with quote  #1115 
Congratulations! I wish you all the best and you can both be very proud.
Theses stories give us all hope in the dark days.
You are my heroe of the day!!!
Tina72
deenl

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Reply with quote  #1116 
Thrilled [smile]
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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.
Torie

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Reply with quote  #1117 
Tears in my eyes, SoTired.  I can't tell you how glad I am to read that!!!  xx

-Torie

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

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Reply with quote  #1118 
Oh wow! Good luck for Friday!!! So excited for you all! You are such an inspiration on here ....x
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UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
K63

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Reply with quote  #1119 
Hi Sotired, so happy to read your post . I always thought how strong you we're always to keep going when things were so tough . You were an inspiration to me. Am so happy for you and family you deserve a break from all the torture and your family deserve peace .
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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  #1120 
Job fell through-she did one shift and the lady decided my d wasn't strong enough to do the work.sigh.
Now my ds friend is living with us-she has bulimia/sub type anorexia I think.so I'm having her live with us whilst she learns to eat without bingeing.its not ideal but she has no one else who acknowledges that her life is dominated by mental illness.d is very good at helping support her friend and the friend is very good at eating what I ask her to,nothing like what my d was like so it's very weird to me.
D took it well about the job ending-but that's mainly cause she hated it and never wanted to go back.
I need to organise some kind of work for her but sometimes I just get so...tired.trying to focus on everyone's health,including my own is exhausting.
Still,she hasn't had to go to hospital since her friend has been living here-first part time and now fulltime.so there are good things there.
Middle d is now doing quite a lot of pushback for the last few kg weight gain.when I took her to the doctor the doctor just said I had ptsd.yes,yes I do-but that doesn't make my worry less valid.smallboy lost weight and I had him regained in a few months ,middle d hasn't yet got back to where she was.but we couldn't do anything legally with middle d cause she does eat,she is gaining albeit slowly,so we couldn't get an assessment done.my h worries about her state,not weight and I hear what he's saying but there isn't anything else I can do other than get her refed and hope at this point.shes 17 now so classified an adult which means we would work with her rather than for her anyway.
All I can do is my best.i have surgery soon myself so I will just keep plugging along cause I can't do more.

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Sotired42
Kali

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Reply with quote  #1121 

SoTired

It sounds like you have a lot on your plate right now. And disappointing about the job but maybe that can be a learning situation. Can this experience of someone saying she is not strong enough to do the work inspire her to try to become stronger so that she can have a more independent life and be able to do some of the things she might like to achieve? 

Thinking of you and hoping you can hold it all together and hoping your surgery goes well.

Is it possible to increase your d's ng feeds to have more calories than they presently have so that she can gain weight? You mentioned in a previous post that she was at 45-46 kg, which does seem low, although I'm not sure how tall she is. 

Quote:
I need to organise some kind of work for her 


Your d. is about 19 now, right? You can encourage her to take responsibility to find something to do with her time, either looking for a job, working, or doing some volunteer work. 

warmly,

Kali

 



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mjkz

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Reply with quote  #1122 
So sorry SoTired that the job fell through.  I do agree with Kali that you should be encouraging her to keep looking but not organizing it for her.  You got yourself and the rest of your family (including the new addition) to worry about.

Maybe a volunteer job that the two of them could do together might be a better idea for them?  That way your daughter can have more flexibility for when she has flares and can build up her stamina.  It would also be a great way for them to do something together and give you down time!!  I had surgery last Thanksgiving so I'll be thinking of you during this time.  It was not fun but the results were worth it.
Tali97

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Reply with quote  #1123 
Hi SoTired,
 I see that you and your daughter are making amazing progress. I had surgery 6 months ago and it proved to be a chance for my sons to step up demonstrate they were capable of doing more. I find that at this time it is amazing how far back physically my gastroparesis son can go if he gets a mild illness and am really amazed at how well your daughter is coping with her condition.  

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

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Reply with quote  #1124 
Sotired,
You know what, I am so damn proud of you, that I am in floods of tears here.
You are the most amazing person.
I wish you peace in your heart my friend xxxxxxxxxxxx

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) 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.
Sotired

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Posts: 1,930
Reply with quote  #1125 
Has been a rough few days here.d had to go in for blood tests every day for four days,culminated in being rushed to hospital.her last gastroparesis attack was bad,but this one was even worse.heart rate160/80, fever,hands twisted and frozen into place,spastic movement,uncontrollably vomiting.she was in the Assessment and Diagnostic Unit,but there were two occasions where she nearly ended up in intensive care.
And then it passes and I go in today after two days of being scared out of my brain and today she is sitting in bed complaining about the nurse (she got moved to a ward late last night) and once her fluids are in she self discharges and is home again,like nothing happened.
She has come home,taken her meds and gone to bed though ,so at least she is being sensible.
Her friend is doing quite well,thrives on the routine of life here,though is struggling with the fact that I insist on showers,clean clothes AND eating.i will do what I can for her but I've had to be really clear with what is expected and what will be accepted here.as she has no one else willing and we have a good relationship with her she is accepting our rules
I am hopeful that my kids will all step up Tali,because withsix people and now five pets here (possum came with friend) if they don't,this house will very quickly descend into chaos.i had planned to get a few meals in the freezer but that hasn't happened.operation is soon so I will sort stuff in between going to an autism course this week.
Don't cry toothfairy.im just playing the cards I'm dealt.besides which,I've already cried this week-they played a song at the gym and I started crying.had to leg it to the shower where I could cry in peace.(silently obviously). Then I got out,got dressed and went to the hospital.
Now I'm exhausted.my d cried on my lap when she came home.its so hard cause I can't make her better.all I can do is be there.
.

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Sotired42
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