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Admin 170 posts
Posted 10 months ago
I was just wondering how are you and how is your daughter?
Member 5 posts
Posted 9 months ago
Thanks for asking .
Not very well ,for any of us ,I am sad to say.
My daughter is on her 10th year of Bulimia, Well the first 3 was Anorexia and it then changed to Bulimia.
She wants help for her Anxiety, her OCD and all her other problems , but she does not want anyone to talk about
We get an appointment for her at NHS, loch would take 18 months to get and then when we finally
get a counsellor she stops going to that councelor as soon as they mention an eating disorder.
Then we have to star all over with the 18 months waiting and so it goes on.
She is very aggressive with me and over the years I cant cope anymore and I do enabling her in her disease .
If I dont then she threatens to kill her self or, me or post horrible things about me on FB and and and...
Offcourse this is my fault for enabling her in the first place but cant get out of this bad circle.
The last 4 days I have been very ill my self and I just cant find the strength to help her. wich made her extremely
agressive. I have turned of my phone as I have to get my own strength back. I can hardly work the last 2 years because of this and also
have bad thoughts like , wishing I would be dead myself...
How can I want her to deal with her eating disorder ?
How can I stop enabling her without feeling like I am the worst parent on earth.
I am / we are both at the end . Just cant deal with this disease anymore.
I am so sorry to read what you are going through. The first thing that I want to do is to reassure you that you should feel no guilt or blame, anyone who is caring for someone with an eating disorder will recognise what you are feeling. I too felt as if I was doing the same, but like you I was being held hostage as I was doing my best to keep her sane , logical and alive meanwhile she knew exactly what buttons to press to manipulate me. I am horrified to read or your terribly long waits, that is not good enough. Have you heard of PALS its the nhs patients complaints site, I have complained to them in the past and they have listened and indeed brought about changes.
My child also refused to see her counsellor, My child is in recovery and has been for a while, but it is only now after moving authorities that she has had a provisional diagnosis of a different psychiatric disorder (bpd) that if you read about it is linked to ed self harm and suicidal thoughts and requires different medication and therapy than depression.
Throughout my child's illness I have made myself a complete nuisance with the nhs but fortunately she did get a place at an ED unit and was in inpatient care for more or less 2 years and I will be honest with you I don't think that I could have done it, they saved her life; the second unit where she was for 11 months was fantastic, because they were strict and caring she decided to put her head down to ignore the competitiveness of the inpatients and recover - it wasn't straight forward and it took time.
You need to look after yourself as well, also if you can involve the wider family/friends, if you can. please go to the doctor to ensure your health and to in seek support. I am not clear where your daughter is in terms of support and recovery has she been in a unit?
sorry this is general in places hope it helps
Hi , Thank you for your reply.
When she first was diagnosed with Anorexia , she was at Malvern College and age 16. Me and her father took her out of the school and I flew back to Sweden ( where I am from ) and she was admitted to hospital as her heartrate was to slow and her weight to low as well. After that she and me were admitted to an eating disorder clinic , Where we lived together for about 3 months . after that she was an outpatient for about 6 months. That is when it all changed and the pattern changed from Anorexia to Bullimia. In 6 months she went from 40 kg - 87 kg , and then somehow she found out about purging and lost every kilo again and now 9 years later she is at a steady 37-38-39 kg. IF she ever passes 40 kg she is suicidal and self harms, She has an extreme OCD and 5 years back she was described some antidepressants against this and her depression, but this made her gain weight so she stopped.
She is now 26 years, living in Manchester now doing her Masters, after finally making it through 3 years of UNI. How I cant imagine as 75% of her days are spent in anxiety over food and weight and OCD. I live in Spain, but have to call her on the phone 3 times an hour and text her twice in an hour ,all day ,between 9am-22pm .During the night I have to call her 1 time to stop her from eating up the whole kitchen. IF I accidentally miss to text her or to call her , because I have a work call myself . There is threats of suicide, extremely hatred towards me and so on so on. At the moment I am alone in this with my daughter She made me (and I let her ) her enabler . My husband and I separated 5 years back as this disease just broke up the whole family.
I have a hard time working with all this going on and I suffer from Migraines, with the last few years are triggered very often with our daily "arguments".
At the moment she has no help, apart from a doctor who prescribes her Diazepam for her anxiety attacks.
She doesn't want help , she does , but doesn't. hard to explain. She doesn't want to be an in patient as then she would miss out on er UNI and work..
She has no friend , because she cant socialise . Go out on dinners and so on. I cant either on my end , as I have to call her these 3 times and text her. Easier to do from home.
She ONLY wants help with her Anxiety, OCD , and Bipolar disorder that she says she has. (not diagnosed).
Sorry this was a long rant. Just don't know how to change our behaviour ...it seems this will continue year after year after year.
I read your post last night but I wanted to leave it until this morning to reply to reflect on it. I am intrigued that you were admitted to an ED unit along with your daughter, I wonder was that in the UK and di you find that it helped?
I was sorry to read that the anti depressants were disregarded because of the side effect of weight gain. It would be worth going back and seeking other medication that does not have that side effect. There are a range of different anti depressants and they do not all suit everyone.
At the end of your last post you say that your daughter will agree to treatment for the other anxiety related disorders. It is accepted that individuals often develop an eating disorder in order to feel as if they have some control over their lives, it begins with them feeling as if they are in control but quite quickly the ED thoughts begin to dominate and then the individual feels very trapped, which it sounds as if that is where your daughter is.
I am not medically trained. The eating disorder is the manifestation of your daughter's fears. So I would suggest seeking support for the OCD, anxiety, Bi Polar and OCD. I understand that there are different medical and therapy treatments for Bi polar. The key thing is to ensure that her BMI is 17.5 or above. So I would go to the doctor and insist on a fast track appointment for a psychiatric assessment. She will have to agree to stablise her weight, and if its at all possible to get her to think that this is her idea or even involving her in planning the next step.
I hope that I am not speaking out of turn however I understand that you and your husband have separated, but he is still her father and so is there any chance that you could share the calls between you. I would also advise negotiating with her again to stretch the times out between phone calls do it really gradually maybe by a minute every few days and then she will see that horrible things have not happened.
I do say again, please seek support for yourself, whether for your family or friends or GP, You are doing an amazing job, you are showing your daughter that you are there for her. Please do keep using this forum for support.
Finally to other parents and carers on this forum, do you have any advice or support that you can offer Bini,
I don't really have any advice , except that try not to get captured like I was . I wasn't strong enough to stop enabling her from the start .
I think If I did that the first year it would have all turned out differently, and now I don't know how to stop. . So in the end ,all this is my fault and she might have been better already after that first inpatient period..
She was in an eating disorder clinic in Sweden, not in the UK. And It seems its always 1 parent that has to stay there with anyone under 18.
Mind this was 10 years ago, and i don't know their routines today.
I cant help thinking if she was there without me it would have been better and she would have stayed longer. Now it was not only her that wanted out, it was me as well and, that energy might not have been good . Because it was like a prison, for us both.
please do not attribute blame, eating disorders catch us all out and I feel as if I am always running to catch up. There is really no benefit it looking back and wrongfully blaming yourself, you have stayed by your daughter and supported her and continue to support her. If there is blame it is on the agencies who should be guiding you and helping you and your daughter. I strongly advise that you try to get her to request for everything apart form the eating as that may be a way in. I know that that is not going to easy but she has said that she will engage with help for those issues so go with that
please be kind to yourself
As it happens she actually finally after 18 months had her first ( again) assessment appointment by NHS mentalhealth this morning in Manchester.
It all ended in tears as she came in ONLY talking about her anxiety and depression, but the psychologist doing the assessment that there was no
help for er unless she first would step up on the scale so , she could check her BMI. My daughter then panicked and explained she needed help for her mental state primarily, but according to the psychologist , unless she first accept that she needs help at a Eating disorder Unit, there is no help to get.
She then ran of from that office and had a major anxiety attack on the bus.
My thought on this is why not help with someones mental state first ? Some patients might need that different approach ? When the patient is more stable maybe they then could see a way themselves in to
getting help with the eating disorder ? Not the chemical imbalance in the brain after so many years of the disease just block that view.
Now as she ran of I guess there is no way for her to get help by the NHS.
Member 2 posts
How are things I have no advice to give no thoughts just that I see a reflection of what you are going through as to what is happening to us our daughter hasn't been well for 4years on and off for the last 6 months she has developed bulimia but has gone down to under 40kilos and because of her age no one will talk to us directly but we have made a nuisance and like your daughter our daughter is having counselling but for her eating disorder not her mental state which I always thought that a eating disorder was a bi product. She lives at home but we are at her beck and call until she falls asleep. Please feel free to reply I can't give any advice as I am really struggling but its a vent.
that makes me feel desolate, how harsh to treat her in this way, I am so sorry; to me it is obvious that they need to gain her trust, her ED is the manifestation of her fears, so why confront that. My suggestion to you would be to complain to PALS as they way she was treated is not good especially after an 18 months wait. I would also phone the centre and complain and ask what they are going to do next and ask them for the reasoning behind their insistence on the scales to my mind it is simple bullying. I also wonder if anyone at the uni could offer her any support. I know that you are exhausted, exsasperated and probably feel defeated, but the nhs is meant to be there to care for us, and this is not a good out come, I suggest that you take them to task and if they are not prepared to listen then I would suggest going to the press as this is just not fair