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catbells

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Reply with quote  #1076 
Sotired I'm in bits reading your updates. As others have said you are an inspiration ; in my early days on this nightmare journey you were one of those dear Feasties offering good solid no nonsense advice and support. I so needed that (and still do).
I wondered how you coped and prayed that one day your dear d would get a break. To hear her progress and eventual diagnosis must be a huge relief. She is at last living a life.
You will sort your middle d out. ED wouldn't dare pick on your family again. However as always vigilance is the key.
Sending happy hugs to you all xx

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Mum to 16y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016
catbells

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Reply with quote  #1077 
Sotired I'm in bits reading your updates. As others have said you are an inspiration ; in my early days on this nightmare journey you were one of those dear Feasties offering good solid no nonsense advice and support. I so needed that (and still do).
I wondered how you coped and prayed that one day your dear d would get a break. To hear her progress and eventual diagnosis must be a huge relief. She is at last living a life.
You will sort your middle d out. ED wouldn't dare pick on your family again. However as always vigilance is the key.
Sending happy hugs to you all xx

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Mum to 16y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016
Sotired

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Reply with quote  #1078 
You guys rock-thank you so much for your support and happiness for us.im still adjusting,but we are on our way to enjoying life I hope.h and I are still struggling a bit with emotions-worry,stress,I worry about catastrophising because I'm so used to living high stress that I could easily end up over reacting to things that aren't that big of a deal (just normal dealing with ASD stuff).
And of course getting weight onto middle d.am hoping against hope that this weight gain will be as easy to achieve as smallboys was.
I hope and pray that life continues to be normal for us but all too aware how fragile that hope can be.
Wishing you all strength in the journey and thatbwe all get to experience boredom ...what a treat after years of stress...

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Sotired42
scared_and_exhausted

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Reply with quote  #1079 
Sotired your news is wonderful, and it's so good to hear of your daughters progress. Is she getting better physically?
And try not to worry too much about d2 (Not easy I know!)
You've got this.
Sotired

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Reply with quote  #1080 
No, she is not getting much better physically.she is the happiest she has ever been,is loving her course,getting close to full marks, BUT, today my h had to pick her up from her course and tonight she is back in hospital with a stomach bug.she still asked for her feed to be brought in,bless her.she is still very frail-when she came back here today I asked her to call her doctor to give a heads up that she was unwell so she did.they rang back an hour later with bad blood results so her dad went with her to hospital while I looked after smallboy.
I don't know how things will pan out long term-I suspect not well and we will outlive her.its not something I like to focus on but it's always in the back of my mind.my physio likened my life to juggling knives and always waiting for one to fall-and he's not wrong.i woke up feeling sick to my stomach and wasn't even surprised to recieve ds call this afternoon.
She also needs a bit more common sense-her course is off four days,on for three and she should spend the day before course restarting resting but instead she spent it hanging out over here with a friend.if she had done that on Sunday she could have got us to help by dropping her back.
Sigh.they all learn the hard way,I was no different,but it's hard when she suffers so much for any mistake made.
Hopefully she will come out tomorrow night.
Gastroparesis sucks.

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Sotired42
EDAction

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Reply with quote  #1081 
Thinking of you and your family sotired . . .

Thanks for keeping us updated.
mjkz

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Reply with quote  #1082 
Sotired, hope she is out and back to her class.  It will take awhile for her to learn how to pace herself. She just moved out and is probably living alone (or without you right there) for the first time.  I know I went nuts in college that first year or so without mom and dad looking over my shoulder.  She will get there.  I'm so happy for you all that she is living life. It may not have been the life you would have chosen but she is still out there actively doing what she can and is happy doing it.  In the end, what more can you ask for?
Sotired

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Reply with quote  #1083 
Just a super quick update about middle d who had gone from 63kgs to 55kgs-one month in and she s now at 58kgs.altnough the doc initially aggravated me with talk of d being in normal weight range just barely, she then redeemed herself by saying to d that she really needs to weigh 63kg.d has accepted this with good grace thank god.
Smallboys weight continues upward-now at 34.5kg.
I have still been waking up every day sick to my stomach,but am hoping this feeling eases as my children all continue to gain weight and live happy and productive lives.
Gastroparesis d was out of hospital the next morning mjkz and went back to her course that day (it was a library half day so no standing).she comes and goes from here-when she has some emotional wobbles she comes back for a night or two, then goes back.she loves her course,is of course getting neatly full marks and has had people argue to be her partner which really tickles her!
She is signing on to do her next course there too and is planning a quick trip overseas with a friend between one course ending and the next beginning.
For me, this is quick [smile]

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Sotired42
mjkz

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Reply with quote  #1084 
So glad to hear it Sotired.  Your doc did indeed redeem herself with the upped weight.  It takes awhile for the sick to the stomach every morning thing to let up. I know I woke up for months after each crisis feeling that way, waiting for the other shoe to drop, hoping things would go well but also planning on how to handle them if they did not.

Overseas-that would be so awesome!!
melstevUK

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Reply with quote  #1085 
Sotired,

I have huge huge admiration for all that you have achieved and had to deal with.  It is fantastic that older D is now living a relatively normal life and that, more importantly, she is enjoying it.  The gastroparesis must be draining but when I remember how ill she was when you first started posting - in all honesty I had fears that she would never pull through.  I am really delighted that she is doing so well and I know with your support and vigilance your younger ones will be ok.

I take my proverbial hat off to you!!  


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

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Reply with quote  #1086 
You and me both melstev-I too can't believe we are managing this well after years of heartbreak.yes,it was a close run thing with the doctor mj,but as I interrupted her once to say "this isn't normal weight for YOU though" to my d she quickly went through the weight requirement to what I wanted.a BMI of 19 is not enough for anyone in my family.
I go to the gym most days tf, I do a mixture of body balance,weight training and rpm (bike classes).i train when my kids are at school mostly though and do it mainly for relief from the massive stress I still feel,currently exacerbated by a extended family situation.when I learn to be less trusting of them it will be a good day for me.
That's really the crux of it-now all the feelings that I could load into one area are dispersed over a large range of problems-i think that's just how my life is.but I'm muddling through,taking anxiety meds now when it gets a bit much and today got a massage between appointments which was lovely.
I find it's actually now that I'm withdrawing from people and am struggling to hold on to friendships-I think some left during all this but I was too stressed to notice.im just trying to get things better-still having a weekly coffee date with a friend at a time,staying in touch by text-but not chasing after people -I'm too old and too tired to worry that much,but still sad though.

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Sotired42
scared_and_exhausted

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Reply with quote  #1087 
Sotired,
I'm not much of a poster on here, but I think of you and your D often. How's everything going? Is your D's weight going up? and how are the rest of the family and importantly YOU too!
Sotired

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Reply with quote  #1088 
Hi scared and exhausted,
D is doing very well mentally and is mostly able to keep her weight between 43.5-45kg.obviously we would all love it to be more,but the pain can really affect things.our GP will not help us advocate for a peg tube even though d really needs one-she has had the NG for over a year (with tube changes every three months) but the doc keeps saying one day she will miraculously get well from gastroparesis.
Keeping in mind that my girl has had more NG feeding during the course of anorexic treatment so her stomach had already shut down for the most part ,it is frustrating that the doctor is not looking at evidence,but rather living in dreamtime.
Without the tube feeding she could not be living the full life she currently is,living away from home,hanging out with friends and a trip to Aussie next week.then she will start the next level of her course.
We are all gradually recovering from everything that has happened.some nights I even sleep well!i read battymattys thread and I so get all those feelings.
I remember when my mum died sitting thinking'what now?what is my purpose?'.for four years she had dominated every waking thought and then she was gone.we had freedom but at a terrible cost.
For me,my ds illness and our recovery is a lot like that.so I work through it one day at a time and try to remember that it's ok to relax.its ok not to spend every moment of every day making myself worthy of 'getting to stay at home'.
Reminding myself that it's my life and my other children still need me there and I don't need to justify it-I'm chronic for having to justify stuff.
I still get flashbacks but I've made my peace with that.ive left my family for the final time as they aren't healthy for me and after a rough time with many physical symptoms,I've made my peace with not having my father or sisters in my life.
I have got stronger and calmer about my decisions.
We make progress every day and that is a wonderful thing.
Thank you for asking and I hope that your life is going well too.

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Sotired42
scared_and_exhausted

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Reply with quote  #1089 
Sotired,
I'm glad to hear you're okay.I'm so sorry your GP will not help - are there any other ways to get one? Any consultants at all in NZ who could advocate for you? I'm sure you've been through it all already, but you never know...
But I'm glad she's doing well! It must be such a welcomed relief after such a struggle, and I'm beyond pleased you're taking care of yourself [smile] and it's super that you've made those good decisions. Is your D still living with you? 

Progress, any progress, is good, and you of all people deserve it after what you've come through.

All's okay here, thanks. Just the usual, D stuck at 75% wfh and refusing to gain more, around 43kg and 5Ft6, not helped by AS level stress. CYPEDS are starting the transfer to adults before she turns 18 and then everything will be out of our hands. Sometimes life is just a case of managing the anorexia and giving as much happiness and support we can, I guess. 

Make sure you're taking lots of time for yourself [wave]
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