Adult eating disorders support

[thesootherfairy]

Hi
Was inspired by the teen thread. Looks really supportive and was wondering if anyone else would like an adult support thread?

I'm 47. Have young pre-teen DC, a DH and a family cat. I work full time self employed. But I've had anorexia since I was 12. Had no help (not well known about back then so no help offered). Recently been diagnosed with anorexia.

Now face a 2 year wait for treatment.

And you?

I'm lucky I have a 14 year old DS, so lower risk than if I had a girl. I've cooked and the two of us have always eaten dinner together since he was a baby. Even when I was light enough that my periods stopped I was just eating less at other times, it was non negotiable.

I seem to have been very fortunate with my treatment.

The first round I was under the ED team for over 2 years, and that included some intense talking therapy with the consultant clinical psychologist, where I did unravel the underlying reasons for finding myself in this position. I knew what triggered my ED but I had no idea the depths of my unhappiness and how much I had buried.

I did not recover at that time, but now I'm in round two under the care of a team in a different county I find the therapy from the first round has enabled me to feel more ready for recovery.

Hindsight has shown me that I simply was not ready to let go of it, I just had too much to deal with.

But now I can use the tools, the knowledge and understanding I have to try again.

I am much kinder to myself now and even though my head is full of thoughts of failure, shame, weakness, I am able to reconcile them better.

@TheOrigRights

I seem to have been very fortunate with my treatment.

The first round I was under the ED team for over 2 years, and that included some intense talking therapy with the consultant clinical psychologist, where I did unravel the underlying reasons for finding myself in this position. I knew what triggered my ED but I had no idea the depths of my unhappiness and how much I had buried.

I did not recover at that time, but now I'm in round two under the care of a team in a different county I find the therapy from the first round has enabled me to feel more ready for recovery.

Hindsight has shown me that I simply was not ready to let go of it, I just had too much to deal with.

But now I can use the tools, the knowledge and understanding I have to try again.

I am much kinder to myself now and even though my head is full of thoughts of failure, shame, weakness, I am able to reconcile them better.

That sounds so positive and happy for you

But have you actually gained weight?

Because that was my issue. I implemented some of the changes they suggested, I ended up losing weight!

Hellotheresweet It's not quite as simple as gaining weight.
I am not very underweight so it's not an immediate priority.

Getting my eating patterns, thoughts and well basically everything surrounding food, sorted out is the aim.

I was advised to stop exercising and didn't. I was open with them, said I wasn't going to. In the end my CK levels became elevated, indicating muscle damage. I was strongly advised to stop all exercise for a week so they could rule out that it wasn't my heart (unlikely, but it was procedure). That was a hard week. I don't do masses and masses of exercise (full time job, single parent) but it is VERY important to me.

I am very prescriptive in what I eat, especially during the day.

Getting my eating patterns, thoughts and well basically everything surrounding food, sorted out is the aim.
Are you out of an energy deficit? I couldn't get my head sorted until I was. I was just underweight but maintaining, not in deficit, for eight months. I've got complacent recently though, dropped half a bmi point, and the thoughts have started to come back. Like a positive feedback loop.

Do you mean you couldn't sort your head out (until you were no longer on an energy deficit) because you were distracted by hunger or thinking about food constantly, which I found is one rather odd side effect from restricted eating.

I mean, when I'm in energy deficit I want to eat less, I want to walk miles, which in turn keeps me in deficit, a positive feedback loop (you know, where a product of a reaction leads to an increase in the reaction, opposite of homeostasis). The only way for me to get out of the loop is to do the opposite of what my thoughts are telling me to do and start eating more.

I've had more contact with the gps in the last week than I have had in years. Got to have an ecg on Friday . They wanted to do repeat bloods today but I wasn't available so that's Wednesday. It's really freaky that they are going all guns blazing on this.

On a side note I spoke to Bupa 3 weeks ago spoke to a psychiatrist and he was going to get a dietician and councillor referral interesting I'm still waiting. NHS seem a lot more on the ball.

Just hoping my potassium has increased because there is no way I'm going to hospital!!! xx

@Luckoftheirish
That all sounds very intense. The idea of going to hospital must be scary! x

I started my 3rd cycle again today, had a screening for treatment and within minutes had a date to start treatment! Pleased it is to be face to face, even if wearing masks, I can not fault nhs , they have been great , even if haven’t!

@TheOrigRights

Hellotheresweet It's not quite as simple as gaining weight. I am not very underweight so it's not an immediate priority.

Getting my eating patterns, thoughts and well basically everything surrounding food, sorted out is the aim.

I was advised to stop exercising and didn't. I was open with them, said I wasn't going to. In the end my CK levels became elevated, indicating muscle damage. I was strongly advised to stop all exercise for a week so they could rule out that it wasn't my heart (unlikely, but it was procedure). That was a hard week. I don't do masses and masses of exercise (full time job, single parent) but it is VERY important to me.

I am very prescriptive in what I eat, especially during the day.

What was the point of the week off out of curiosity? Did you then reduce?

For me - it was about gaining weight and fast.

I didn’t. But still useful I’d say.

Hellotheresweet

The week off was to give my (exercise) muscles time to recover. If my CK levels had still been elevated after that week it would have indicated a possible heart problem.

I'm actually finding being on this thread quite difficult and maybe unhelpful. I haven't identified why though.

Welcome @likestoski
Your local service sounds amazing!!
How long is your wait for treatment?

Hi @TheOrigRights
I'm sorry it might not be helpful
I was hoping to see I wasn't alone (clearly I'm not) and be able to vent as I have no one to talk to IRL and no prospect of help any time soon.

You're free to vent too if you like.

Is it because there are a few of us here with similar issues and your ED is telling you it's normal? As in normalising/minimising the problem?

Again so sorry! My intention wasn't to be unhelpful.

Or is it because I've been quite negative? Sorry again needing to vent.


Sorry @TheOrigRights

Hi all, I have not read all the entries yet, but wanted to say hi.
I am 49, married with DS(8), working full time in Science (wave @TheOrigRights).

I was anorexic for about 8 years, and I am almost recovered now. I say almost because I know I am not comfortable with my current weight and still have issues around eating.

Can I still join?

@IamAporcupine

Hi all, I have not read all the entries yet, but wanted to say hi. I am 49, married with DS(8), working full time in Science (wave *@TheOrigRights*).

I was anorexic for about 8 years, and I am almost recovered now. I say almost because I know I am not comfortable with my current weight and still have issues around eating.

Can I still join?

I would love to hear more about your experience. What was recovery process for you? It’s actually really positive to have someone join who describes themselves as recovered and I would love to see if I can glean anything helpful for my situation.

Of course totally understand you’d rather not divulge

@thesootherfairy

Or is it because I've been quite negative? Sorry again needing to vent.


Sorry @TheOrigRights

No, no, it's not you or anything you have said. I am not offended.

Sorry if you took my comment that way - it's me not you.

I m 55 and have had an eating disorder since I was 17 . I am SO fed up with it but am resigned to the fact i will never be ' cured' . I hear friends talking about getting take aways and going out for a meal and wish I could do the same . But the thought of having to check calorie content and knowing I will make myself sick afterwards just isn't worth it . I had a massive health scare earlier in the year and had to wait to hear about the results of a biopsy which was incredibly scary and I thought to my self what my single regret would be if it turned out to be bad news . And I realised it would be the time wasted spent on thinking about calories and not enjoying eating what I wanted . Thankfully the biopsy was fine but since then my eating disorder has upped its game . On a good day I m able to be fairly rational - I m 8 st 12 after 5 kids so not too bad but then the thinking kicks in ... and the strict calorie counting.... and everything else that comes with the unwelcome guest in my life . Above all I just want to be 'normal' xx

Hi everyone. I've enjoyed 'meeting you' on this thread. It's a great idea.

I don't know how to introduce myself. Recovered undiagnosed anorexic who wants to lose about a stone despite my BMI being 22 exactly and feeling healthier than I have done for years! And actually happy when I look in the mirror! So why I do intermittent fasting I do not know!

If I did not have my family I wouldn't eat past 4pm every day and be gloriously thin! My husband and children keep me on track but I would so love to lose a stone!!!

My eating disorder started when I was about 12 but it was at its worse when I was 16, 29 and 40. I'm now 42. As a teenager I was never given any formal help, despite my BMI being about 15 - you needed a BMI of 11 to receive help. I also as a teenager never missed a period! I received help in my early 20s with the NHS and then between ages 32 and 40 after the birth of my children. I paid privately for therapy this time. I can have flashbacks and panic attacks if I am not careful.

I wanted to ask you all. Do you have trouble with chilblains? I am a normal weight but I still am affected by them and they are a real pain! I am also regularly anaemic. Does anyone have that issue too?

I find it hard how a lot of help was/is for generic eating disorders, so I was bunched up with the anorexics. That just made me feel like I wasn't thin or sick enough. That I was a gross failure. That's the problem. I look well. I vomit several times every day. Nobody wants to hear about that sort of thing and nobody is worried about me dying, as I teeter on the higher end of healthy BMI. I can imagine how it is for those with BED. They get the rawest deal of all...

On a completely different subject, I have Raynaud's partly caused by the drugs I am on, so I used to really suffer with chilblains. Now I'm on nifedipine, so am much better.

Hi @CousinLucy @Mummytofivelittledarlings @IamAporcupine @DuckingMel

Welcome.

It seems that our continued issues are down to a concrete lack of suitable NHS help and intervention. And what little there is available is either the wrong format (teen audience) or too short (12 weeks someone said?).

Shouldn't something be done about this?

I think (or perhaps I should say hope) there is starting to be a very slow shift in attitudes, or at least people raising awareness of the issues for adults accessing eating disorder services.

The final inquest into the eating disorder related deaths of I believe five women being treated by a trust in Cambridgeshire has recently published its conclusions. If you look up Averil Hart you will find the story and reports, but for some they might be quite triggering.

Hope Virgo is also quite a prominent campaigner for better awareness and treatment. I think her story is similar to some on this thread, whereby she had a relapse in her anorexia recovery but couldn't access treatment due to her BMI. A few weeks ago she was asking people to comment on their experiences of ED services, which she was recording on a map to try and gather information from sufferers' experiences in different locations.

There are also other NHS reports on services, or lack of, and funding. As I understand, one of the problems is that although money is ring fenced for mental health spending, none is reserved specifically for eating disorders, which require specialist treatment.

Anyway, I just thought I would mention these things as they could be useful platforms for lobbying MPs or just spreading awareness on social media if that is something you felt like you wanted to do.

@Rustnot thank you.
I certainly wasn't going to go on social media! I can't even tell DH.

Can't imagine putting that on Facebook

Someone should do something. Just. It sure who "someone" is (bagsy: not me!)

I'll have a look at the information you posted and come back. I hadn't heard of Hope so may start there.

Morning all

How are we all doing? Does anyone else suffer from extreme tiredness? Due to all the blood tests I've had recently I have been put on a lot of vitamins but nothing seems to be making a difference?

After speaking to the eating disorder specialist who was apparently very worried about me I got a letter yesterday about having an on line assessment which is not til 29th Dec! So obviously not that worried!

I'm trying to eat a little more, trying to be healthier but dh continues to say I'm not getting enough calories in. It just seems like a long slog and I really just want to be left alone. I know that's the eating disorder talking and I'm forcing myself every time to eat to fight the voice telling me you don't need this particularly when there is no one around, like nobody's watching so why are you eating?

Is this just me?? Sorry feel like I've just brain dumped on you all!! Xx