Illness in trying to recover. - Talk ED (eating d...

Talk ED (eating disorders)

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Illness in trying to recover.

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Hi. I just wondered if anyone has ever had the same sort of problem. Like i have said before ive had an eating disorder sinse i was 9 years old . In that time tho i have gone all out sensibly to recover by myself ( i tried for help for 30 yrs but never got it) but everytime i have started eating more i get illness after illness. Had tonsilitis twice ending up with one stay in hospital ( for antibiotic drip and seline drip) then got bronchitis then gastroenteritis within 6 weeks of eachother. Ive never been ill with viruses or bugs when im so underweight and not eating yet get them all the time when i start to try to eat a LOT better. I managed to put on 3lbs since march this year but my cals do flutuate each day due to beeing ill for the past 6 weeks, so the weight i put on i lost ,plus more but not intentionally. This has happened 3 times now so i am finding it hard when im desperately trying my hardest.

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kittens1989 profile image
kittens1989

First of all congratulations for putting so much effort in to getting better. It takes real courage and strength to do this and will stand you in good stead for going forward.

With regards to your query surrounding illness, yes the exact same thing has happened to me. My dietitician explained this. Basically when you are restricting etc. Your body takes a beating and realises biologically that you are under attack so puts defence mechanisms in place. These include your metabolism slowing (so the food it gets isn't used up too quickly) fatigue, breathing difficulties, lack of concentration, heart abnormalities etc and one of these issues is your immune system shutting down. This is all your body's defence to protect you from danger and keep you alive. When you start to recover your other systems have to recover too and therefore your body has to work extra hard as everything reboots. Think of it like a computer issue. If there is a problem it can go into safemode. As it fixes itself it can take a while to start up again.

Your whole body will need time to adjust...even gain weight. Be patient as things will improve. In early Spring I had loads of problems but thankfully my immune system seems to have improved now.

The other thing I would add is about dietry control. Your body needs energy to rebuild and as soon as it realises it is getting refed it rather jumps the gun to fix things as quickly as possible demanding more food. It's important that you factor this in as your metabolism in recovery isn't an accurate source as to whether you are hungry and can often mean people binge more if not properly monitored. It can take years for your metabolism to recover properly so sticking to a meal plan will help you to stay in control as your body repairs.

Hope this helps and keep fighting.

in reply to kittens1989

Hiya. Thanks for replying. I thought that this is why it is happening but wasnt sure as i have no medical supervision. The nurse at the hospital was concerned about my weight but even she got a bit of an ear bashing from the consultant for mentioning it! I know about the feeling hungry all the time part of recovery. Im still not actually eating 2000 cals yet and took me 6 months to get to 1200cals. Im currently on about 1500 - 1800 at the mo which for me is a massive step forward and ive also never had a bmi above 17. Its currently 14.2. Its a hard illness to get over and actually got harder the older i got and has been my life for over 30yrs but i am getting there, lol,very slowly though! I do actually want a life and not keep hiding away. One thing i want to ask tho is that when your appetite rockets and you want to eat for england do you just ride it out and eat or try and control it?. I was bulimic in my teens and dont want to go down that road again. Thanks again for replying and have a great day

kittens1989 profile image
kittens1989 in reply to

Well done. You sound like you've come such a long way.

Not quite sure why your consultant was so cross about your nurse but anyway.

There are a few things which may or may not help.

- First, the anxiety is going to be a lot higher at a much lower weight as like with my point above, your body is on alert and anxiety is one of the biological signs that your body is in danger. It sounds counterintuitive but it will decrease the closer you get to where your body should be. Very few people have a natural set point lower than 18.5 and in caucasians it should be between 20 and 25. It is hard to adjust to a weight that you haven't been for so long and as I'm nearly at my set weight it has been really difficult adjusting. There are many things which will help me here because I just want to recover. I have come too far now.

I would recommend starting some CBT further down the line as you can directly tackle body dysmorphia.

-Eating/overeating etc. I completely agree it can be really difficult to increase intake. I like you was stuck for ages on a low calorie band and whilst I've moved to the next band I've been stuck there a while too. The fact that your body want's more food is a sign that you need more food. What has happened is that it realises it's getting fuel but needs more to repair damage (muscles, tissue, organs). You will need to increase your intake because of this. I would suggest doing it slowly (so if your maximum at the moment is 1200, increase to a band from 1300-1400). That way weight gain doesn't occur so rapidly and push you back. It is important that you do push this because on a low intake your metabolism will be slower and therefore if you do binge (extremely common) your body will struggle and you are more likely to pile on mass because it is a low intake. It sounds bizarre but a higher intake gives your metabolism more of a chance. Ironically I lost weight when I started eating around 1300 calories hence having to intake more.

I am really disciplined because of the calorie bands my dietitian and I have and whilst it doesn't work for everyone I calorie count and use portion guidance so that I do feel in control of my recovery. The combination of this has actually pushed me into eating carbs as I know that I have x calories left per day and so that's a great thing.

At the intake you are it sounds like any or all of the following:

- your portions are too small

- you aren't have enough meals a day

- your meals don't include much in the way of carbs or fat.

You can introduce stuff missing slowly and also it might help to have small snacks in between meals to help with bingeing.

I realise I've written alot but please feel free to message back.

Keep going.

in reply to kittens1989

Hey. No your reply was great. Its strange really cos i have qualifications in diet, nutrition and fitness . Also a degree in psysicology but im pretty much thick when it comes to myself !hense the reason ive never actually practiced at either and became a dance teacher and trained chef! The dancing gave me reason to get a little better each time my weight got seriously low but now after a broken back i havent got the same motivation and dont know what or who i have a reason to get better for anymore other than myself but struggle with that one

in reply to kittens1989

Hiya. I hope you are ok. Two things, not just in your answer that puzzle me but from proffesionals too is firstly people in recovery get seriously hungry at some point or other and maybe binge which i ive only done once and then it wasnt copius amounts of food but more than i would normally eat. Obvioslusly the body goes into fight or flight mode. The chemistry in our brains change when we get below a certain weight. I have noticed in myself that when my weight drops below 7 stone all rational thoughts are very irrational and somehow i look so much fatter at 5 stone than at 7. Which for me sounds absolutely stupid saying that but when i look in the mirror i seem to look bigger. Also one thing i have learnt tho is that the metabolism doesnt take that long to get back to normal. It will zoom up for a while in recovery and when weight restored but not for long but it certailnly doesnt go down. And i also disagree with the amount of food to eat in recovery. We starve ourselves at say less than 1000 cals. Mine was approx 500, which is unatural but eating 3000+ cals is also unatural. Ive read loads of stories online and know one person imperticular who showed her story on instagram about anorexia only to become overweight and then started a diet blog!

kittens1989 profile image
kittens1989 in reply to

Hiya. Hope you're having a good bank holiday weekend.

So I was just reading some of the posts below, and completely agree, Beat are amazing! I attend their support groups (although haven't recently, due to finishing my MA), and they are so well run - trained facilitators etc. The group I go to is for 18s + and there are quite a few older sufferers as well as males who attend. I tried ABA, as this was suggested to me, but I found it awful, really patronising and the facilitators weren't trained either. Beat have also started running online support groups too. Definitely recommend.

You kind of answered your own question above. When our bodies are put in danger, then the defence mechanism is heightened anxiety. Your body is in a state of alert, so naturally the anxiety is going to be greater the more poorly you are. It's a defence mechanism to respond to danger e.g. bear in the woods. In eating disorder terms, your heightened anxiety is to fear yourself and so you will have body dysmorphia. It's like I have a ridiculous bad fear of bees and wasps, so they will always seem nearer and larger than they are. Similarly, due to a car accident I had when I was a child, I will always see cars closer to the car I'm in, and fear the worst, when actually there is plenty of room to overtake on the motorway etc. (I don't drive).

I have to contradict a few of your points I'm afraid. The metabolism can take years to recover, because it is used to surviving on such a low amount, meaning at a lower intake and weight it will gain pretty quickly. It needs to get used to eating more, and it sounds like from what you were saying about being hungry all the time, you need to be increasing. You mentioned that you were concerned about bingeing and getting out of control. This is why we need to be very disciplined in recovery in what we eat and how much, because the body is still adjusting and doesn't know whether it is full. I recommend looking at the Minnesota study, as explains refeeding much better than I have, and has significantly influenced eating disorder recovery programmes.

Weight fluctuation is an entirely different thing. Mine will fluctuate up to 3kg when I'm on my time of the month but that's not gain, it's fluid retention (and will usually include a small gain, because that's what I'm meant to be doing).

500 calories and even 1000 calories will mean your metabolism will slow down enormously to conserve as much energy as possible. In eating disorder recovery after a while you will need 3000 calories, because your energy input will be at an equilibrium, so you will need to eat more in order to increase weight. If you take elite athletes such as rowers, they burn up so much energy that they need around 6000 calories on any one day. So the amount varies depending on your activity level.

It does sound like you're wanting to hear that you can eat less to recover, and like you are still a bit in denial. I really recommend seeing if you can get a referral for CBT through your GP (which is relatively straight forward, unlike long term programmes). The IAPT short term therapy usually provides 8 - 12 sessions, which isn't a lot, but it does give a bit of support. You can also get fairly low cost therapists e.g. the therapist I saw up to last year was a trainee and £25 a session as she was a trainee. She was the best therapist I've ever had. All low cost counselling can be found through the BPS, so they are approved.

I think it may be beneficial to get a referral to a dietitian. Whilst specialist ED dietitians usually need to come through the ED specialist routes (which is probably what it sounds like you are having difficulty to access...I have my own very strong opinions about access to ED treatment, in so far as it's atrocious and counter to the NHS constitution), but you should fairly easily be able to get a referral to an NHS community dietitian which will help with some of the general recovery knowledge.

I hope this helps. I would say to try and avoid looking at "nutritional" and "recovery blogs" online, as far too often these are written by people with no dietetic qualification and contain a lot of inaccuracies, tending to focus what is in vogue at the present time. You don't need a qualification to be a nutritionist, you do to be a dietitian meaning that knowledge is actually reliable.

in reply to kittens1989

Hi. Thankyou for replying. I think on the metabolism thing tho we will agree to disagree on that one. Not only that everybody is different and everybodies metabolism is different. Initionally yeah some people will put weight on quick at the start.. im not looking for an excuse not to eat so much, i love food ( misconception that all anorexics hate food and just lick a lettuce leaf everyday!) If that was the case a lot of us would be dead by now. I think cos ive had this for so long it just seems unatural and alien to me to eat so much and panic does set in. I have read the minnesota study and makes sense to me how differently our minds work when starved, even for grown men! Im not in denial im just scared. After over 33 years of this it is hard to reajust. I am qualified in fitness and nutrition but never practiced it as i became a dance teacher and trained chef ( lol, sorry . Just realized how bizzare that might sound!) As for the monthly pms and weight gain/ water retention im pretty much the same. When i did have my periods my weight would rocket up by about 9lbs. Water weight does feel a lot different to actual weight gain tho cos its so uncomfatable. I have endometreosis too and unfortunately its on my left lung too and ive spent lots of time in hospital because my lung has collapsed because of it so not having a period at the moment isnt a bad thing for me but also i do know its not great as they stopped cos of my weight being low. So there is a bit of confliction going off in my head over that one. I think maybe ive got to the age that where the eating disorder is concerned i should maybe just put up and shut up. Thankyou for taking the time to reply and have a great day. Oh , one more thing. I agree that a lot of people do bang on about how knowledgable they are about what, how much and when we should eat . And unless they are fully qualified in that area they shouldnt give advice out about it. Anorexia does not make us qualified dieticions

kittens1989 profile image
kittens1989 in reply to

I'm not really sure how to reply to this except on your logic, your weight would balloon eating an amount which even an infant wouldn't eat.

There's discrepancies e.g. person fairly sedantory will need less than an olympic rower but the point is that only 15% of your RDA is based on what you do. The rest is made up of keeping you alive. These bits are going to break down (hence all your medical issues) if there is not enough energy and in recovery you require even more fuel in order to repair damage.

I definitely think seeking support from a qualified dietitian would be the way forward if you are so scared and want things to change. My dietitian has helped enormously. :)

in reply to kittens1989

I do actually know all this so please dont talk to me like im an idiot. I never asked for advise on how much i need to eat. I merely pointed out the fact that it does not take years for your metabolism to repair unless there is an underlying health problem besides the eating disorder i.e thyroid problems etc

kittens1989 profile image
kittens1989 in reply to

Haha. Oh dear oh dear! Well good luck in your attempt to recover.

in reply to kittens1989

Just exactly what is your problem? Do you get some sort of gratification for being nasty? We all have different opinions on things. Grow up you silly girl. You obviously dont like others opinions cos urs is the only one thats right!

kittens1989 profile image
kittens1989 in reply to

That's a bit of an assumption that I'm a girl, it's not just women who suffer with eating disorders.

No, I don't get gratification from providing people with negative feedback. I get gratification from helping people. There is absolutely no point in coming on a forum and asking for help if you don't want to hear the answer. If I came online to ask about whether my medication was the cause of x problem and someone told me it was, then it would be pretty pointless to ignore it if that's what I was asking about.

You wanted to know why you got more ill now you are eating more and why you were having challenges needing to "eat for England". I am fairly sure I answered both these questions for you, also explaining how you can help things.

I'm sorry that you are too poorly to listen to advice and I feel for you because my own battle has been a long tough journey. And I have had to listen to advice in order to get to where I am today.

I genuinely wish you all the best

in reply to kittens1989

I understand that. I did also mention tho the eating for england thing has only hsppened to once or twice and even then it wasnt a binge maybe just another slice of toast which i wouldnt normally have. Also i have posted on here about the fact that boys/ men suffer too as well as older people but obviously you havent read that. Also i pressumed you were female cos you said that you gain weight when you have your period! Also you said you were at uni so i presumed you were younger than me ( even tho i know people go on as adults to have further education) So that wasnt actually too hard to figure out really. One thing, i do admire tho is your passion and fight you have in you. Everyone does have their own opinion otherwise we'd all be robots and be the same. But what is right for one person isnt right for the next and all our bodies dont work the same and its just a matter of finding out how it does work and working with it. Trial and error. I also wish you all the best . Im not a nasty argumentative person and i respect other peoples opinions but i do get devensive when i feel like someone tells me its their way or the high way. Take care and like i said before i wish you luck too.

in reply to

One thing tho. I do listen to advice otherwise i wouldnt have come on here. I said one thing, you didnt like it cos i disagreed with you. We all have our own story and different experiences. And you said "good luck in getting better" That just wont happen with terminal cancer

in reply to kittens1989

Maybe if you actually read messagers correctly it would stop you making an idiot of yourself in the future

kittens1989 profile image
kittens1989 in reply to

Sorry for not replying sooner, I have been out with my family and dog, enjoying the bank holiday weekend.

If you think I'm an idiot and haven't read your posts properly, you won't mind that I copy and paste the following from your posts.

I don't dispute discrepancies in metabolism, as I mentioned, olympic athletes require a greater amount of food than someone with a sedentary lifestyle. As you have studied diet, then you will know how much energy the body requires to function, even on a sedentary lifestyle, and you will obviously know how much of a proportion of your intake is required just to keep you alive.

"Its strange really cos i have qualifications in diet, nutrition and fitness . Also a degree in psysicology but im pretty much thick when it comes to myself !"

"Two things, not just in your answer that puzzle me but from proffesionals too is firstly people in recovery get seriously hungry at some point or other and maybe binge which i ive only done once and then it wasnt copius amounts of food but more than i would normally eat....And i also disagree with the amount of food to eat in recovery. We starve ourselves at say less than 1000 cals. Mine was approx 500, which is unatural but eating 3000+ cals is also unnatural."

What you have outlined here, is that you...who are qualified in a mixture of things including diet, disagree with professionals. You have outlined that you are "thick" when it comes to yourself...I would never say that about someone, but i appreciate it is hard to help oneself when it is them who is suffering. I'm not going to shout about and say my treatment is better than what yours, because that is only something a 47 year old would do ;), but my dietitian has been instrumental in the setting up of various specialist eating disorder units. Maybe she is wrong, but she is enormously well revered in the sector, so I guess I'm going to have to trust an established professional as opposed to some random bod online, who is very clearly governed by their eating disorder. As someone younger than you (although age is no barrier to being able to provide support), I know you don't want to hear my experience, but the iller I was the harder it is to think rationally, and see reason. The eating disorder is in control and wants to think that everything and everyone else is wrong. I have no doubt that you have the ability to stand up to it, but it isn't something you can do alone.

I have come far enough to not let bitter comments like this make me feel inferior, and I understand that they come from someone so very poorly. I'm sorry to hear you have terminal cancer, but it wasn't written in your posts so it's not something one is going to guess on a forum about eating disorders. I haven't read your other posts, because quite frankly I have better stuff to do with my time. I saw this, and wanted to help.

I still wish you the best in recovery.

kittens1989 profile image
kittens1989 in reply to

I normally wouldn't bother but the only reason I am is because I care and I know you want to get better. If you take your advice you won't.

Great you're trying so hard to recover - it must be so frustrating to get continuously unwell like this - I have similar problems due to the beating my immune system has taken - suggest a visit to the GP re your other health issues might help. Sorry also you've been unable to get help for the ED - have you tried the ABC helpline and website - I found this good - also help has moved on in some areas now with more awareness of EDs - might be worth talking to the GP about getting at least a dietician to suggest things that might help. Good luck and keep going - its worth it.

in reply to crazycrossstitcher

In all honesty ive tried absolutely every avenue possible to get help. I know times have moved on and more help is available but it is mainly for younger people. At 42 nobody takes me seriously and when i do keep asking for help apparently im too old and should have grown out of it by now. It also leaves me very frustrated and alone. I do know tho that when i do eat more and put a bit of weight on my mind set changes for the better and i can think more rationally and it does eventually get a little easier. Im certainly not gonna give up tho. I do have rotten days, just like everyone else does but i do appreciate the good days and im still astounded that im still alive. Ive had 2 heart attacks, broke my back in 3 places and had to learn to walk again and still the anorexia is by far harder to deal with and recover from. Its amazing how your body and mind deals with things and the one thing we all have to do to stay alive is eat yet struggle with it. Thankyou for replying and sorry ive rambled on so much. Take care

I am 56 myself - so I am an older sufferer and know how frustrating it is as so many services are for young people. Do try ABC though - they have supported me for many years now - and you can get phone support on the counselling side and you can have a befriender - which at least means you don't feel so alone and isolated.

in reply to crazycrossstitcher

Thankyou for that. Im really sorry that you have suffered for so long. Is abc anything to do with BEAT? Never heard of abc before. Oh and a question really not related to this but your name on here is great. I do loads of cross stitch, knitting and crochet and it does relax and help me no end. Not only that i think working with colours is good and for me with the knitting the texture as well as the colours is quite healing and you have an end product. Look at it and say ' yeah, i made that ' and gives you some sort of achievement

crazycrossstitcher profile image
crazycrossstitcher in reply to

BEAT is completely different and really aimed at young people - ABC - Anorexia and Bulimia Care are open to all those with EDs - so do give them a ring on 0300011213 - often hard to get through but worth it when you do - also try their website. Yes into crafts - cross stitch just one among many

in reply to crazycrossstitcher

Thankyou. Ive never heard of them so i will defianately give them a try. Arty stuff is thearaputic and a bit of an escsape. Have a great day

in reply to

Sorry. Caught the s after the c by mistake. I can spell normally

in reply to crazycrossstitcher

Hi again. Sorry to bother you. I tried the number you gave me but it keeps saying number isnt recognised ????

crazycrossstitcher profile image
crazycrossstitcher in reply to

Probably my dubious typing - numbers a bit dyslexic - 03000 111213

in reply to crazycrossstitcher

There was just one 1 missing. Thankyou but closed now til after bank holiday. But thankyou

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