darkshine Report post Posted June 17, 2012 Are there any techniques that people have found helpful when struggling to eat? I keep feeling sick at the thought of eating even when I am hungry, and I am literally having to force myself to eat. It's been getting worse over the last couple of weeks (this happens every so often) and it's horrible because it gets to the point where I struggle to sleep because I feel sick because I can feel my tongue in my mouth - and I struggle to brush my teeth because the brush in my mouth makes me gag a bit. Today got to a point where I was forcing myself to eat half a sandwich and then suddenly I gagged and I didn't know whether spitting it out would make me throw up so I tried to swallow what was in my mouth and I couldn't and I was gagging and my stomach was lurching and I ended up digging my fingers into my stomach and twisting really hard to see if the pain would stop the retching - which it did - but it took me about a dozen swallows before it felt like it had gone down far enough to not throw up. Did I mention I have a vomit phobia?!? It's like my throat closes and refuses to let me eat and then I start thinking about it and it gets worse. After today I am now concerned enough that I need to try something new because my technique of trying to think really hard of something else while I eat isn't working any more and I'm low on energy and don't eat enough at the best of times. I can never eat a full meal as it is. I just can't afford to not eat and reverse the progress I have made over the years, so any suggestions would be good. Darkshine Quote Share this post Link to post Share on other sites
Lyndalou Report post Posted June 17, 2012 Does the fear apply to liquids too? Or is it just something that you have to chew? You know yourself that you can't live on fresh air and if you are prone to becoming very depressed and are on medications it is essential you have the right nutrients going into your body. If you have a lack of energy you are simply going to experience mood swings and feel even worse! What happens to trigger this off? Is it an actual fear of food or the fear of putting on weight? Do you have a physical problem with your gagging reflex or is it simply the thought of food? I'm not a fan of thing like Slimfast shakes or other 'bulking' drinks but if a compromise between food and liquid means that your energy levels go up then you might be able to think better and ultimately start eating properly again. I know things are never that simple Darkshine but although I eat kind of ok now, I only ate one meal (if that) for many years and it probably didn't help my mental health any. I didn't eat at all at times when I was really down and the less I ate, the more difficult it was to eat although I never got to what you are describing. Take care. Lynda Quote Share this post Link to post Share on other sites
robert7111a Report post Posted June 17, 2012 Are you on any medication that can suppress appetite? Do you ever actually feel hungry? Are you better at snacking throughout the day rather than trying to eat everything in one go at one or two meals? Is it the presentation of food or what's in it? Do you look closely at the ingredients? Sorry for the 20 questions... Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 17, 2012 Thank you both for the 20 questions (as Robert put it) I mean that cuz I hope by answering the questions I can figure a way out of this. Ok, Robert first Are you on any medication that can suppress appetite? Do you ever actually feel hungry? Are you better at snacking throughout the day rather than trying to eat everything in one go at one or two meals? Is it the presentation of food or what's in it? Do you look closely at the ingredients? Sorry for the 20 questions... I'm on mirtazepine - its supposed to be an appetite stimulant and also supposedly had anti-nausea properties - I have felt less sick but maybe I've finally succumbed to letting a belief convince me - to start off with it really did stimulate my appetite to the point where I just wanted to crunch things all the time... that effect has worn off. I started taking that med back in late sept or earlier october last year. I do feel hungry but I often don't recognise the fact until I feel faint or start feeling ill or my stomach hurts. And then sometimes I'm not sure if I've eaten enough or if I'm really thirsty instead of hungry. Snacking can sometimes work but sometimes having to interact with food more times a day is problematic - I quite often forget to eat - I am often reminded to do so and then I can sometimes tell if I'm hungry or not... The presentation of food and what is in it are major issues for me and have been for most of my life (I can remember issues from when I was about 7 onwards). I don't look closely at ingredients - I refuse to because I don't want this to turn into a bigger problem. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 17, 2012 I'll answer yours separately Lynda - mainly cuz its easier for me to do it that way Does the fear apply to liquids too? Or is it just something that you have to chew? You know yourself that you can't live on fresh air and if you are prone to becoming very depressed and are on medications it is essential you have the right nutrients going into your body. If you have a lack of energy you are simply going to experience mood swings and feel even worse! Yes it can apply to liquids too - when it gets really bad - I am trying to avoid it getting that bad - this has happened so many times in my life now and I just really want to stop this downward slide before it gets too far. Yes, its a vicious circle - I hope that by discussing it I can work it out or something because before this started again I was barely eating enough and if I can't keep the intake to a certain level my stomach seems to shrink or something and then it takes weeks and weeks to get it back to even an awfully stupid level. My daily food consumption has not really changed once it settled down after the new meds. I have a complan milkshake in the "morning" - its about 250 cals I think plus whatever 200ml milk adds up to... I have half a sandwich for dinner or lunch - mostly with super thin cheese or some kind of paste - the bread is weightwatchers but not because I'm worried about weight - I have it because normal bread is too heavy and it has too much moisture in it and is too doughy. For tea or dinner (depending on what everyone calls these meals) I prepare any number of meals, from when I've visited people and see the size of theie evening meals I guess mine are on the smaller size or normal size - it doesn't fill the plate but the plate doesn't look empty either - I eat about a quarter on a bad day and half on a good day. And then either 3 biscuits, or a chocolate bar or a pack of crisps. I last totalled it at around 750 to 1000 cals a day - well - I got someone else to add it up for me - I refuse to look at calories - but even without the numbers I know several small children who eat more a day than I do... Today was a bad day, my housemate got me to have one of those tv dinner things and the anxiety while it was cooking just ramped up the closer it got to being cooked - I managed one slice of almost see though beef, 6 peas, the side edges of a mini yorkshire, and 3 potatoes that were altogether about the size of an egg (if have squished them together to make a shape). My plate didn't really look like I'd touched it. What happens to trigger this off? Is it an actual fear of food or the fear of putting on weight? Do you have a physical problem with your gagging reflex or is it simply the thought of food? I don't like food very much at all. Usually if I have a minor blip I can eat junk food, but this is one of those times where I can't even stomach that. I'm not scared of putting on weight and I'm not overly concerned about losing the weight I have - I had a health check about 3 months ago and I am just over half a stone overweight - I don't care about that as I plan to get out more somehow and that'll go - it doesn't worry me. I don't know what causes it, but its like I have no appetite, I don't want food near me or inside me, I don't want it in my mouth, nothing appeals at all, and I know I have to eat so I keep trying and try to ignore it - until what happened today happened and now I'm scared I'm going to throw up or something and I don't want to eat bread again for a while because of the sandwich thing. It only becomes a physical problem when it gets bad and then I have a lot of trouble. I'm not a fan of thing like Slimfast shakes or other 'bulking' drinks but if a compromise between food and liquid means that your energy levels go up then you might be able to think better and ultimately start eating properly again. That's why I introduced the complan - last time it happened bad I couldn't eat breakfast any more so I started getting those complan things - they say they have vitamins and stuff - I don't know whether that makes a difference - but it might be good so that I drink some milk with it cuz I don't like milk on its own any more. Problem is I haven't got back to the stage of being able to eat breakfast yet so I just keep buying the shakes each week. I know things are never that simple Darkshine but although I eat kind of ok now, I only ate one meal (if that) for many years and it probably didn't help my mental health any. I didn't eat at all at times when I was really down and the less I ate, the more difficult it was to eat although I never got to what you are describing. Take care. Lynda That's what's worrying me - I figured it would be best to ask people for help now before it gets so bad I actually can't eat - that has happened several times in my life and I don't want to go back there. I'm actually quite disheartened cuz I need to eat more to get more energy to go out and get fitter and things seem to be either heading in the wrong direction or they've stalled or I've hit a blip I don''t know what to do Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 17, 2012 There's more details as to part of the extent of the problem here - from about post #21-ish onwards http://www.asd-forum.org.uk/forum/index.php?/topic/26782-healthy-lunch/page__p__316756__hl__diet#entry316756 Quote Share this post Link to post Share on other sites
A-S warrior Report post Posted June 18, 2012 damn it i was going to see if you wanted to join me in a eating challange, 40 peanut butter and jam sandwiches in under an hour. lol in seriousness make sure the foods you do eat are calorie dence, like nuts, gold top milk, and fatty meats. maybe try a 24 to 36 hour fast, and see if you cant liberate your mind from food for a while, and maybe your appitite will come back. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted June 18, 2012 As this has happened before, what is the process you go through to get back to some kind of normality? By that I mean do you end up in hospital, they make you stable, and send you away with meds? Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 18, 2012 I've never been to hospital for it - I've asked doctors and psychiatrists for help and they don't listen, the only thing they did was the year before last they set up a few appointments with a nutritionist but all she did was tell me what I should eat - it didn't help with the psychological or sensory problems. Usually - depending on how bad it gets - I have to figure out how to self-rehabilitate my diet - at the worst it can get so I'm only drinking, or I can start throwing up a lot and get stuck in a cycle of that. One of the worst times I ended up having to break a rich tea finger into about 8 bits and over the course of an hour slowly eat it - this is one biscuit - and then I had to build it up from there - it could take anything from a few weeks to several months to get my diet back to a "liveable" level. To be honest with you, it is only the last couple of years where I have tried to stop this as soon as it starts up. In the past I used to ignore it and just not eat and then I'd get ill and stuff. But these days when I recognise the signs I try to intervene before it gets out of hand as I don't want to ever be that ill again. I don't really know what to do. So to start with I figure that I should get extra complan in, and some stuff that is small to try and have little bits when I can. I guess what I really want is to not have any issues with food at all - I'd love to that person who sits in the restaurant and orders all these different things and enjoys every mouthful. Maybe that won't happen - but I do think it is a realistic hope to try and have some degree of normality so that every meal isn't a battle, so that I don't feel the anxiety and panic when I think I have to eat. To not feel sick over every little thing. And to not have to be so controlling that I can only eat things cooked or prepared a certain way. It would also be nice to not have the psychological impact that some foods give me at times (then at other times I can eat them - until suddenly I can't even faced the words being said). I just want to like food Quote Share this post Link to post Share on other sites
robert7111a Report post Posted June 18, 2012 Have you seen an Occupational Therapist? Quote Share this post Link to post Share on other sites
Lyndalou Report post Posted June 18, 2012 t seems like this problem rules your life to a extent? The main difference between your relationship with food and mine appears to be that yours is fear based and mine was (is?) control based. Maybe however, the fear you have is some weird type of control too though? I like food. In fact, in many instances I love food. In the past though I was probably quite addicted to the 'empty' feeling you get when you've not eaten. I felt more in control the longer I went without eating. It also made me feel good to know that I kept my weight down and that I sometimes got compliments which boosted my self esteem. You're right though - the longer you go without eating it means that your stomach physically shrinks meaning that you cannot consume very much food without feeling full or over-full. In areas of the world where people live in starvation conditions, the very act of giving someone food when their body has been deprived of it for so long can kill the person instead of saving them. I am a little confused that you can consume so few calories and still be classed as overweight. Even 1000 calories is well under the recommended daily calorie intake for an average adult. Although 2000 calories (used to be?) is the average calorie intake for a female and 2500 calories for a male obviously if you are taller than the average this intake needs to be adjusted upwards and downwards if you are shorter than the average. However, you would need to be exceptionally short to get by on 750 to 1000 calories! I find it interesting that you can manage certain foods easier than others, namely junk food. The foods you mention have different textures and flavours so IS the root cause sensory? If you have struggled with how food feels in your mouth since childhood could there have been other reasons why you become so paralysed by the thought of eating? It must be so frustrating that no-one is taking this seriously. Is there any chance you could get referred to a dietician or an OT like Robert suggests? I would keep on with the shakes though they are not ideal but at least they are something. Do remember that vitamins are not absorbed into the body in pill form nearly as well as when they are taken into the body through food either but again if you are not getting the nutrients any other way then it's probably a good idea to do this. I wish I could think of some way you could start to enjoy eating....long shot.....have you considered hypnotherapy even? Take care, Lynda Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 18, 2012 damn it i was going to see if you wanted to join me in a eating challange, 40 peanut butter and jam sandwiches in under an hour. lol in seriousness make sure the foods you do eat are calorie dence, like nuts, gold top milk, and fatty meats. maybe try a 24 to 36 hour fast, and see if you cant liberate your mind from food for a while, and maybe your appitite will come back. Shame, you'll have to have a competition with someone else I guess I daren't fast because then I get locked into a pattern - I'm hoping its a blip and my appetite comes back - but can't find no gold top milk for several miles - will have to make do with what we have in the fridge - semi-skimmed - can't eat nuts as I can't stand them... What I am doing though, is looking at what I can face and going for the one that says it has the most cals - so that bit was a good idea - I didn't think of that Have you seen an Occupational Therapist? Funnily enough that's one type of person I have not seen - what do they do? Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 18, 2012 t seems like this problem rules your life to a extent? The main difference between your relationship with food and mine appears to be that yours is fear based and mine was (is?) control based. Maybe however, the fear you have is some weird type of control too though? I like food. In fact, in many instances I love food. In the past though I was probably quite addicted to the 'empty' feeling you get when you've not eaten. I felt more in control the longer I went without eating. It also made me feel good to know that I kept my weight down and that I sometimes got compliments which boosted my self esteem. You're right though - the longer you go without eating it means that your stomach physically shrinks meaning that you cannot consume very much food without feeling full or over-full. In areas of the world where people live in starvation conditions, the very act of giving someone food when their body has been deprived of it for so long can kill the person instead of saving them. Yes at times it really does rule my life - at other times it is a little easier. I get addicted to that empty feeling too - which is why I figure I have to actively try and stop this before it goes any further - especially since I know it can go much further.... It's fear and control and sensory issues - control is a big problem, and fear, and the sensory elements (including, texture, appearance, smell, looks, how much or little it is cooked, what it is, and whether just the thought freaks me out. I am a little confused that you can consume so few calories and still be classed as overweight. Even 1000 calories is well under the recommended daily calorie intake for an average adult. Although 2000 calories (used to be?) is the average calorie intake for a female and 2500 calories for a male obviously if you are taller than the average this intake needs to be adjusted upwards and downwards if you are shorter than the average. However, you would need to be exceptionally short to get by on 750 to 1000 calories! I find it interesting that you can manage certain foods easier than others, namely junk food. The foods you mention have different textures and flavours so IS the root cause sensory? If you have struggled with how food feels in your mouth since childhood could there have been other reasons why you become so paralysed by the thought of eating? I drink the fruit juice stuff that you can dilute, and lucozade sport and coffee most of the day to have energy - and plus the coffee helps with my neck pain and makes me feel much calmer - which is contrary to what I know it should do I don't know what they add up to in cals I also don't move that much, I don't go out, although I am trying to change that - but it is really hard cuz I lack energy - bit of a vicious circle.... I guess there could be other reasons why I get this way about eating, but if it was something in the past I don't know what - the root causes are definitely sensory, fear and control (so it's all in my head I guess....) It must be so frustrating that no-one is taking this seriously. Is there any chance you could get referred to a dietician or an OT like Robert suggests? I think part of the reason is that because I'm not 6 stone they don't think it is an issue - I have explained so many times and nobody takes me seriously - but when I know that I can get stuck into a pattern of throwing up for weeks or when other stuff happens and you know your body isn't coping - and I know that is serious - and I've told them all that in graphic detail and all they did was arrange the health nurse - or whatever she was... I don't know what an OT does I would keep on with the shakes though they are not ideal but at least they are something. Do remember that vitamins are not absorbed into the body in pill form nearly as well as when they are taken into the body through food either but again if you are not getting the nutrients any other way then it's probably a good idea to do this. I wish I could think of some way you could start to enjoy eating....long shot.....have you considered hypnotherapy even? Take care, Lynda I haven't tried hypnotherapy - couldn't afford it either I have mentioned it in the past and at the time it was private only - which is beyond me - the idea sorta freaks me out anyway but you get desperate don't you at times... Quote Share this post Link to post Share on other sites
robert7111a Report post Posted June 18, 2012 I don't know what an OT does An occupational therapist helps people with Sensory Integration Disorder to "retrain" their brains to process information with a sensory integration (SI) approach. This typically takes place in a sensory-rich environment sometimes called an "OT gym." During OT sessions, the therapist guides the person through activities that are subtly structured so the person is constantly challenged but always successful. The goal of Occupational Therapy is to foster appropriate responses to sensation in an active, meaningful, and fun way so the person is able to behave in a more functional manner. Over time, the appropriate responses generalize to the environment beyond the clinic including home, and the larger community. Google Occupational Therapy for sensory integration disorders Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 18, 2012 That's pretty interesting - whenever anyone has mentioned occupational therapy it;s almost always been about kids - so I wasn't sure about it - it's one of the few things I haven't looked into. Have spent some time looking on google and it seems to make a lot of sense - I wonder if that could work... I'll mention it when I next see my psychiatrist and see what he says about it - I'll have to read up a bit more so I know what I'm talking about I think that the fact I'm getting really anxious isn't helping because I can feel my muscles and body is really tight - I think the anxiety is making me feel sick as much as the food issues - I'm worrying about it hours before I need to even eat. Today has been about the same as yesterday - with different food. Milkshake, less than 1/3 of a sausage roll from a well known bakery, 1/2 a nutrigrain bar, and half a sandwich. I guess the battle rolls on... Nothing for it but to see if tomorrow is easier. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 19, 2012 It wasn't. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted June 19, 2012 Have you ever been put on anxiety medication for this, or other problems. And if so, did you find it helped at all with your eating [or lack of eating] problems? Is there anything you can do to distract you whilst you eat eg. watch a TV programme you are hooked on or a film, or listen to music so that you 'eat' without paying so much attention to it? And what about "playing" with food. Eg. putting some things on the table, that you cannot/don't want to eat presently - but which you would love to be able to eat in the future; and just allow yourself to smell, touch and place it on your tongue without feeling you have to chew or swallow it. Just to experience it, but taking off the pressure of having to actually eat it. I found that my own son, who has and has had alot of fears around food, was much more relaxed when I took off the pressure of having to eat it and just encouraged him to smell it, touch it, place it in his mouth and then spit it on a tissue. After some time I found he was able to eat most of these foods. Of course there still remains some food groups that he cannot tolerate due to sensory issues such as smell and texture [eg. all beans and peas because the 'shell' on the outside just bothers him too much when it comes off in his mouth. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 20, 2012 Yeah I tried that today, they gave me valium for going outside but I don't like taking it much cuz I knew someone who got really addicted to it. I have it on a request prescription but I don't request it often, I have a full box anyway. It's the lowest dose I think of 2mg. And I only ever take half a table so I take 1mg then. I haven't touched them for a few months - I forget I have them - so today I decided that I should take a quarter of a tablet when I thought I might need to eat cuz I figured that I was getting so tense anticipating that I would have to eat, and then I felt sick, and that made me more anxious cuz of that phobia, and then that made me struggle to breathe - and that just made me feel sicker and more anxious about it all. I had a milkshake thing at 3:45am, slept, had another at 12:00, then at about 3 I felt like I might be hungry and decided to take 1/4 so 1/2 a mg - I managed to eat a banana and it was ok, I had to concentrate really hard on writing an email and listened to music and put a fan on. Tea was a salad which I hate and I couldn't face it at all so I lobbed it in the fridge and at 8 I had another 1/4 and managed to eat some of it (like 3 pieces of cucumber, a mini tomato and a piece of ham and a 1cm square cube of cheese) I did manage to eat a slice of bread too. So, better than the other days - don't want it to become a habit though - I'm really really cautious about the valium and don't like using them - and they are supposed to be for when I am having to go outside and I'm panicking and although it's similar it isn't the same. I don't mind playing with some food, like when people have lentils or other dried pea thingies and you can swirl 'em round but I wouldn't want to touch fresh food or cooked food unless I was eating it. One thing I have always forced myself to do is to try everything - I've tried a lot of foods, I even try them again like a few years later to see if I've changed my mind cuz like when I was a kid I hated beans and peas for the same reason as your son, but now I can eat them sometimes and it's not so bad. The cheap beans don't do it so much, especially if they aren't boiked to a gross mush and still look like separate beans in a sauce that hasn't been sullied by bean insides so is red distinctly separate from the beans (unlike how heinz ones go). When I'm not having this problem, and when I don't feel this way every time I have to eat, I know what I like and don't like for every food group but its difficult cuz even brands make a difference (and not always is expensive the best) and like asda changed it's chips and now they don't do the ones I got and they all are in different bags that are brown now when they were blue before and that makes them seems even differenter - and they don't cook the same, look the same or anything so that's been a major crisis trying to find oven chips. Or that the complan has changed its box and sachet design twice in the last year and that totally freaks me out, it looks like a baby food packet now, and some places you buy it and it tastes funny, like fusty and weird so it has to come from certain places, but then everyone likes that flavour so its hard to get. They don't realise how important it is! I can handle the supermarket moving everything around so nothing is where I think it is - just!! But when they "improve" something I like I just panic like hell cuz they don't usually improve it at all - they make it different when it was fine before you know? And that's just beans, chips and complan it gets so much more complicated than that - it's like it for everything!! And then there's rules about what I can have when and what interval of time has to elapse before I can have it again, and then if I have a bad experience with a food that gets written off for a couple of years or more, and people can't name certain foods or I can't eat them, like pork or egg, even if I was about to cook it at that second I would have to do something else because those words near those foods makes me feel sick and panic. I don't want it to be this way I really don't cuz preparation is a whole other minefield, trying to time everything right is hard and finding the parts of food I can eat, like I can only eat the outside edge of a burger, or the edge of a roll, actually just about anything that has an edge, I only eat the edges of it. I only eat the tops of some pies and the bottoms of others and dip the chips, I can't eat any fat on meat apart from bacon, which has to be a certain kind and cooked for a pretty long time... I only eat the ends of sausages and a certain shape of chip, I actually have to separate likely candidates as I cook to try and find some I can eat them (chips that is). It goes on... for everything, and everything has to be cooked right. Things that are wet must never touch things that are dry unless I choose it. If I have chips and beans on the same plate I sacrifice a few chips and create a barrier, a dam with them across the plate pinning the beans to their part. Gravy is a no. I keep it in a jug and dip things. Sometimes I can put it on carrots or cauliflower but not often as they are hard to cook at the right consistency and I usually fail and they are near raw and everyone moans. Even junk food doesn't completely escape these rules. I cannot eat a mars bar normally, I have to eat the chocolate off the sides, then the bottom, then pull the middle off, then eat the caramel and chocolatey top last. Twix's get sliced with a knife to split the biscuit from the caramel. And everything else get's broken or eaten in it's own specific way that doesn' change. Crisps are scrutinised for acceptable ones and the rest put to one side for the bin or someone without this problem to grab. I can't go out many places to eat either. And I can't eat blindly, everything is checked. Seriously, I know this is a problem, it really rules my life, I have to time when I should eat and every day is a battle with it, it isn't just when I feel sick and can't eat like now - its a factor of every single day of my life - and I've told almost every person I have seen in that service over the years several times and nobody listens to me, I try to ignore it and carry on, and just get through each day but it is really hell, and it is controlling my life to an extent that I feel is just ridiculous because I, and everyone I live with just accept it as it is, they don't say certain words, they can't ask about tea before 5pm or I get really angry, and they ignore the placements and the checks and quirks of the ways I eat, what I eat and how I eat. And at times I do almost forget that this really isn't normal because every time I have asked for help I have been ignored - and yes, over the last few years where I have learnt to say things better I have written something very similar to this and given it to them, I've recited it, I've had my carer say it, and I don't understand why they ignore it. And I don't know what to do to stop or change. Right now though I just want this latest thing to go away cuz in comparison the other hell is less worse cuz at least I don't feel sick all the time and so panicky and anxious and stuff. Quote Share this post Link to post Share on other sites
robert7111a Report post Posted June 20, 2012 What about the sight of food on TV - for example cookery programs. I know its not the same thing as touching/smelling/tasting the same thing, but does the sight of raw/preparation of food on TV do anything for you? What about watching other people eat - what does this do for you? Quote Share this post Link to post Share on other sites
Sally44 Report post Posted June 20, 2012 Blimey, after all the fiddling with the food, to get it right and separated, it's surprising you are left with any time to eat it! But that is the whole point I think. I suppose not stressing about it as much as possible. It is really good that you can identify when things are getting worse. And if you are eating things like complan, or anything else that is nutritionally balanced, then at least you are gettting what you need in a drink. And you can live off drinks alone if they are well balanced. Not ideal, but not a health risk either. I suppose pre-plan what you are going to eat, take some medication if you need it, and try to distract yourself. That seems to be the only thing at the moment. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 20, 2012 Things got worse last night. I get this thing where I can't even swallow my own saliva - I am not comfortable going into details, but essentially I was throwing up like stomach acid at 4am and fell asleep leaning on the toilet for half an hour. Then I got into bed at 5 ish.This morning I haven't thrown up but there is now nothing inside me any more - if you can infer from that what I mean. Since I woke up, all I have had is about 50ml of water today and even that has taken me 2 hours to drink. I have spoken to everyone here in my home and I have shown them what I said on here (I hate doing that but this time it feels like I have to do something because things are spiralling out of control) and we have decided that I should go and see a doctor. I think I have a problem, I seriously think I have a problem, when I wrote what I wrote last night it really hit me how much both I and my "family of housemates" ignore it and treat it as ok, just another thing that Darkshine does that is another weird fucked up little quirk, but it's not, it's a battle that right now I am losing and I don't think I can fight any more, and I am so tired of having to fight all the time in my life - I can't find my inner strength - I can't keep hold of it and right now I am seriously crying my eyes out because I feel so very scared and alone with this, and I don;t know what to do. It also hit me that I shouldn't be keeping this all locked inside me like so many other things cuz I have done that and everyone thinks I'm fine cuz I act like it is all alright and it really isn't all right at all. My appointment is in a couple of hours and I will do everything I can to get there. I am talking about this because I am scared - and I hope that by breaking my silence I will have to face up to this - I hope that it will break part of the control cycle - and I feel really frightened about what will happen and I don't use this emoticon thingy very often and when I use it I mean it but I really am struggling to type this as I cannot see through crying very well, and its really hot here and I can't stop shivering and my teeth keep rattling and it's all just a total mess, and I just want it all to not be a problem and for it to all be just fine cuz eating is something everyone does and I am so tired of it being a never-ending battle that I never win, and of the people not listening. I don't think the doctor will do anything but at the very least it will be on the system - does that matter? I don't know but at least there will be a record this time so they will know it happened. But if the doctor wants me to go to hospital he can go ###### himself. I am not sure what is going to happen at all and I'm so blo0dy scared and frightened and I feel ashamed and guilty cuz my housemates are really worried about me and keep making me cry and I don't cry - people don't see me cry - but today they have and I hate that everyone's worried now and that it's my fault that they are, and I think I should have kept my mouth shut about it and not shown them what I said in this thread - but I was worried that I would give whatever it is inside extra power if I didn't tell on it and I think that I had to do that. This is a really bad day, and I didn't want it to come to this, this is exactly what I was trying to avoid... I just thought that I should let you know cuz everyone's been really helpful and supportive and I am grateful for that and I just thought I should say what is happening and that I don't want to feel alone in this any more, you know? I'm so sorry about it all though, I feel like a total loser and I feel lost and I don't know if I can do this again and fight it. even if I get it back to "normal" it is still a daily living hell Sorry, I'm going to shut up now. Quote Share this post Link to post Share on other sites
robert7111a Report post Posted June 20, 2012 Darkshine Firstly well done for having the courage to post. Now hopefully, you have managed to release all that built-up tension and see the doctor with a clear and level head. And you shouldn't be going on your own - so I hope that somebody will be going with you. I should also say that I hope you've managed to eat something but maybe this is the wrong thing to say under the circumstances - so apologies. Lets see if the doctor can help you rather than just fob you off with meds just to get you out the office. Clearly you need counselling and direction which the GP cannot offer. If you are able later on, please let me(us) know how you fared. Guess a good sleep is in order too. Best wishes Quote Share this post Link to post Share on other sites
LancsLad Report post Posted June 20, 2012 Look after yourself Darkshine, kind of hoping this is a case of food poisoning or something like that and might be cleared up in a few days with the right sort of intervention, and not simply a development of your more general issues. Thinking of you. Quote Share this post Link to post Share on other sites
Lyndalou Report post Posted June 20, 2012 Really hoping the GP has taken you well and truly seriously because this simply is just NOT RIGHT! You need some kind of appropriate help and you need it very soon. Please get better soon. Lynda Quote Share this post Link to post Share on other sites
indiscreet Report post Posted June 20, 2012 Darkshine, I have been out all day and have only just seen your post. I hope the GP was able to give you the help you need. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 21, 2012 Thank you everyone for your thoughts - to everyone who has posted here - it means a lot to me that people care It was really hard for me to agree to go to the doctors, I really don't like going to see a GP and usually don't go at all... It was very stressful, my housemate/carer went with me and helped me talk - which is good cuz when we went in the doc asked what was wrong or why I was there today - I can't remember which she said - but I could only say errrrrrrr errrrrrrrrrrrrr - and then look in panic at my housemate cuz I didn't know where to start. Anyway, between the 2 of us we got the message across, I took along one of my posts from here that I printed out (#18). In all honesty I wasn't expecting all that much from the GP - it was an emergency appointment because for the rest of the week my housemates are working so it was now or never for that reason. I knew that if I said what I think of GP appointments then I might not go cuz I'd talk myself out of it. She did take it seriously and I liked the way she talked, she listened to everything and read the printout, she said what I know already and that is that this needs to be sorted in a 2 pronged way, one looking at the physical problems that I have, and the other looking at the psychological ones. She said I needed extensive help from a psychologist. The problem from there is that I am already in the psych system and as such they are apparently in charge of any referral. This bit makes me very stressed and worried because it means I will potentially have to kinda "do battle" with them and it's hard enough doing the battles I already am doing. The GP gave me a prescription for anti-sickness pills, she agreed with me that it was a good idea to just nip that cycle in the bud before it got going - seeing as whenever this has happened before I can be throwing up for almost a week (when it's good - it has been much longer before a couple of times). It took a while to find out what I had last time as my records are pretty patchy and unclear from when I last had them because the doc at the time didn't give a damn, fortunately I remembered they were weird and you stick one between your top lip and gum at the front of your mouth and then she knew what they were straight away. We borrowed a car to do this, and afterwards I couldn't face getting back into the car cuz I felt sick from the stress of being at the docs - between waiting and the appointment it took an hour. And my housemate needed to pick up the owner of the car and get my prescription so I met them at a point halfway to home. Probably not the best idea cuz it's been the hottest day yet and I picked the wrong road and it took forever to walk there and because I hadn't eaten at all since yesterday (and none of that was left inside me) and all I'd had was a few sips of water, so I felt like I was kinda barely moving. Anyway, the whole thing meant 2 hours outside (so my walk must have took a fair while I guess) and I was wasted by the time we got back. I used the pill thing and about 2 hours later my stomach was cramping and it really hurt so I had about half a cupful of this packet soup stuff that is like water. And I managed to drink some water today, and half a glass of robinson's dilute stuff and 2 coffees. Which sounds pretty pisspoor but at least I don't feel too sick - just a very little... If that doctor is actually working there all the time I might change to her instead, cuz she did at least listen and think and stuff - unlike my usual GP who does even barely talk and then questions my judgement and ignores my psychiatrists instructions... So, where to go from here? I guess I start my battle... And there's so many aspects of it that I feel very overwhelmed. 1. There's the battle of eating and that could take a few weeks... 2. Then I have to try and continue to be honest - which is hard cuz I don't tell people when I'm struggling, I don't want to be weak, and I don't want people fussing and nagging at me to eat cuz that doesn't help - but at the same time I am not managing this by myself and if I'm honest this has gone on for far too many years now. And being secretive and hiding it doesn't help. Like last night when 2 friends came round and I said I was struggling to eat and stuff and they just said "oh ok" cuz the way I say it makes it sound dismissive and normal and sound like I am handling the situation when I am not. 3. Then I have to try to communicate with the MH team - and the fact that takes so ###### long for them to do anything scares me cuz in the meantime I'm sort of out on my own with this. 4. And the battle with my negativity - Yes, I've told every single person I have seen in the MH team about this problem, to varying degrees of explanation, from mentioning it, to going in to excessive detail about it and nothing has got through. I can surmise that it's to do with lack of resources or funds or stuff like that. All this really leaves me with a few problems, not least the fact that I have to find strength, resolve, determination and for a long time. I can't get in to see anyone til next month - I have an appointment that was supposed to be for something else in 3 or 4 weeks - my care-coordinator still isn't back and the emergency team are mainly for other things... because I am trying to fight this and am trying not to get to the point where my body starts failing, and because I am therefore not an death's door, I know they won't treat it as an emergency. The fact that I have to work out how to get food into me and battle with that hell for weeks before I can even talk about it is a fact that won't matter. When I think of it that way I can see this turning into months before anything actually happens. I don't know whether to call and see if the other psychiatrist working there could fit me in, or just wait... The GP had a good idea about sending the thing she read off here to my psychiatrist before the appointment so he can read it and understand before I get there. I will do that. But that leaves me now still at a point where I don't know what to do, other than focus on the here and now and keep trying to put fluids in me, cuz let's face it, I can live for a while like that, and then try to start having small bits of food... but that's gonna be hell on by body, it already is hell on it, but I don't see as I have any other choice if I want to avoid hospital or death. I don't know how I feel about all this, part of me is screaming that I should give up with it all cuz then I wouldn't ever have to have this battle, but I can't do that... the stuff in my head though... it's not easy... I cannot face solid food and even though I feel hungry right now my head won't let me even try. This is gonna be difficult - I've never told anyone who isn't a doc or whatever all about this - it's new - admitting that I'm going through this is new, it's hard because it is something that I have kept secret from most people - most people just think I "struggle a bit" with food - they don't know the extent of the problem - and if I was to fill in the gaps I have left even here, it is one massive mess, a mess I should have sorted out years ago, and it makes me feel angry that I have tried to do that so many times and people wouldn't listen to me. The last time I mentioned something they said that I could just deal with it with the CBT lady that should start sometime soon - and I only get a limited amount of sessions (of course) and they are already for anxiety, agoraphobia, thinking, depression, beliefs... there won't be enough time for the food problem as well and to be honest that stuff is more important in that I am sick of not having a life - but that's a catch 22 cuz if I don't eat I don't have energy to have quality of life... my gut feeling tells me that this food problem could take a while to sort out, it's so complicated and ingrained, when I say it is a mess, it really is. How do I get the MH team to listen to me this time and take this seriously? I really do appreciate everyone's input here, from the suggestions, to the questions that helped me describe this, and the encouragement and thoughts from people who are concerned. I have felt less alone. I have felt that people care and that has meant so much to me. It has helped me to admit all this and maybe it is the starting point for things getting better. Sorry it took me so long to get on here, I crashed after 7 and only woke up a while ago, or I would have said all this earlier. I feel very freaked out over what I need to do though - it seems so impossible at this point in time - and I don't like the uncertainty.... That's everything for now... Darkshine Quote Share this post Link to post Share on other sites
robert7111a Report post Posted June 21, 2012 Well done Darkshine, I bet you are really glad to have gone now, despite your worries etc. From your post, it is clear that she took a genuine interest and showed understanding... she sounds like a real gem. So yes, now she has reinforced things that you already know (such as the 2-pronged physical and pyschological attack), you are now ready to move forward. As you know, from the physical side, if you don't eat, you will feel sick - on top of all the nausea etc through anxiety and panic. You know what you can eat - is there any possibility of you increasing your intake slightly? Believe it or not, your gut plays a vital role in general wellbeing...it is not there solely for the purpose of digesting food. If your gut isn't in good shape, then you will feel like ###### and this will impact heavily on your psychological well-being. All you can do is think of today - every day, keep up with the fluids and nutrients and lets hope this GP can kick a*s with regard to the MH team. Keep up the posts Darkshine, we all care Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 21, 2012 Thanks Robert - am just thinking of today (today). Later there's a load of stuff I need to find out. Not sure how I'm going to go about it but I feel like I'm gonna give is a ###### good shot. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted June 21, 2012 have you tried Sertraline before? it is for anxiety and OCD. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 21, 2012 Hey I meant to reply to your thread earlier and got side-tracked, only have a few mins now, but if I remember rightly you said it is relatively new, so I don't think I've tried it - went though loads initially but that was more than 10 years ago. Last year, In early October I changed meds and went though a really rough time of it - it's another fear - I don't like putting things in my body I guess I've sort of got used to the new ones now, I reduced them, ah, maybe march because I was like a zombie, it is true that they aren't very effective but you know what? I am getting my mind back again, I can think, and even though I am going up and down like a yoyo some days I don't mind too much in general - cuz it's nothing like the yoyo-ing I do when I'm off meds and cuz I've spent so long being depressed constantly that it's just nice to have some ups, even small ones and even if I get the down's too - but before there were not many ups - so even though it's infrequent at times it is nice to feel stuff. I will make a note of it for future reference though - I have that one from that song on a note too - citalopram - different purpose slightly. I would rather consider things that some people have found useful - you hear some scary stories about some drugs - although citalopram as I recall has mixed reviews. Although while we are on this subject I want to see if there's a way I can control my mind off the pills - if I can find answers then maybe other people can too - the mind is a powerful tool I think and if I can figure out how to use it I fully believe that there will be methods of control. For racing thoughts, ups and downs, fears and anxieties, for depression and distorted thinking - I am sure that there is a key somewhere. One day I hope I find it. In the mean time, I'm happy to settle for second best cuz it's giving me tastes of my mind, of my thoughts and in smaller exposures to them, I am handling most of them - but there are also big areas of issues too... my compromise is to carry on taking the meds I am on and learning how to do what I want to do with minimal help. I don't like meds at all - but they can serve purposes I think - but I've been taking anti depressants and anti-anxiety pills since I was 19 and that is way too long, that isn't a crutch, or a helping hand, it isn't creating a place to regain control, and even though I have been told by more than one person that I will need to be on meds for the rest of my life - I refuse to believe it. One of the pills I take is carbamazepine - it is an anti-epileptic drug too - and when they first put me on it I spent a week just drooling and staring into space - when I could wake up that is - I kept the pill cuz it reduced my violent moodswings and it reduced my violent behaviour. I've got it down to 200mg. If I gave that dose to someone they wouldn't wake up for some time. A lower dose at 50mg can still knock someone for six. The other med is mirtazepine and I've took that down to 30mg - it's an anti-depressant - the best thing it has done is get me off the old med that was giving me chronic neck pain - now it is 90% better - is it cuz I got rid of the old pill that did that or the new one - I don't know - but just like I want to learn to control my mind, I want to learn to control my body and I know that one is possible cuz I learnt techniques to relax it that works when I am in the right frame of mind. The anxiety I feel rules my life - but I think the answer, after all these years, is to stop the meds and learn new ways of coping, I am more mature now than I was even a couple of years ago - mature in the sense that my mind used to be this closed place full of stop that drove me insane and it literally did - whereas now, even though I have my moments, I sometimes find a new space, space to think in more rational ways, and that space gives me hope that one day I can be med free - and that if there are actual methods to do so it could help other people, cuz I see people on here who have similar struggles or their children do and it'd be pretty cool to unlock some aspects of how my mind works and see if it is similar for others. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted June 21, 2012 If you are thinking of reducing, changing or stopping meds you need to go through it with your GP or psychiatrist - especially as you have a number of different meds, and have such significant anxieties and difficulties. Any change has be done slowly so that the difference it produces [good or bad] can be recorded. Quote Share this post Link to post Share on other sites
Lyndalou Report post Posted June 21, 2012 Well done on getting to the doctor and for making yourself understood - it was a very good idea to take your friend with you. It sounds like it'll be a long drawn out process but it's a very positive first step and like Robert said, it is great that you were listened to and that the GP is referring you to the right people to help you. Maybe being open with your flatmates is going to help a lot. Even though you feel uncomfortable with it, the way you have explained it, it sounds like they really care about you so keep the channels of communication open! Take Care Quote Share this post Link to post Share on other sites
indiscreet Report post Posted June 21, 2012 Darkshine, having an emergency appointment and seeing a new doctor as a result was probably the best thing that could have happened. It sounds as though she is really concerned and, as Robert says, let's hope she can kick a's with regard to the MH team. In the meantime concentrate on getting some 'food' intake - even if it's just liquid. Try Baxter's soups, they tend to be more expensive but I've found they are really good, being both tasty and nutritious. Quote Share this post Link to post Share on other sites
darkshine Report post Posted June 22, 2012 Last night was a night of throwing up again and collapsing next to the bog for half an hour afterwards because I couldn't physically move. So... that's what I get for eating a little something as I wanted to see if I could eat something proper yet - obviously not... Today I have had 1/3 of a complan and I have had a rich tea finger. I am plodding my way through a glass of robinson's and I have had a couple of coffees - so - that has to be better than just water... I'm gonna have to be more patient and build it up slower. I don't have much energy left but I'm not weak either, I can stand, I am not dizzy, just can't eat yet. I will try another biscuit shortly. I will find out about the doctor and if she works there or was just a locum as I don't actually know - the surgery staff dropped down to a skeleton crew last year so they could well have hired a new doc - I'll enquire next week. My housemates went out and got loads of stuff that is kinda bitesized stuff (junk food mainly) and a bunch of soups so I will see if I feel up to any of it as and when I can. @ Sally, since throwing up the first time I have not been able to take my meds, the first night after I choked on them, the next night I couldn't face them and last night I threw 'em up - so it's what? Er, 4 or 5 days now? I don't know, I've lost track of time this week!! I will of course be trying to take them again tonight - I wouldn't usually go this long without them and wonder if last night was like a withdrawal thing cuz I felt sick all day and a lot of those meds make you feel sick when you stop them. If I decide to come off them I will of course do it with medical support - don't want a rehash of last autumn as that was not good at all. Quote Share this post Link to post Share on other sites
trekster Report post Posted July 29, 2012 Avoiding gluten, dairy, msg and aspartame helped with my lack of appetite. It has to be fairly strictly done though. i used to have severe nausea and would forget breakfast and lunch then took another hour after going dizzy to remember that i needed to eat. What do you eat in an average week? Do you gag at anything you eat/drink or some things you eat or drink? i survived a year at university on the following; breakfast omelettes made with eggs, mushrooms and water (used a microwave cooked to make them) lunch large bowl of cooked vegetables or a jacket with tuna or beans (avoid butter) dinner steamed fish with raw vegetables and a baked potato. i lost 2 stone in weight over a year and had slow cook avoiding gluten and dairy at the weekends when i went back home. Another option could be a zinc deficiency (or it could be both) if you can taste zinc tablets then you probably need to take them. Quote Share this post Link to post Share on other sites
darkshine Report post Posted July 29, 2012 I had an allergy test (or something) a few years ago and dairy and gluten came up negative on that - to be honest I have little choice with dairy because that's a big percentage of breakfast with the calories in the milkshake thing, and I can't stand the taste of any milk alternatives. My mum has a gluten and dairy free diet (it was her who pushed for me to have the allergy test) and I've tried everything she's tried - for example with alternatives to cows milk - and really find them disgusting. As far as I know I don't have aspartame - it's an artificial sweetener isn't it?.Can't stand the taste - I think it's bad for people's stomachs, like sorbitol and something else... I avoid MSG - apart from the odd take away - but that isn't too frequently and some are worse than others I think. It's like a phobia at times, and like an eating disorder at others, and like a sensory issue too... I'll look into the zinc thing In an average week - at the moment I eat: Breakfast Complan Milkshake Dinner A banana Pack of these biscuit things (they are a diet food but that isn't why I eat them) Tea - in an average week - it does change About 1/4 to 1/3 of an evening meal... this could be chicken casserole, beans on toast (I can eat one slice of toast), salad, something and chips (oven ones) twice, sandwiches, meat and veg, I try to work around my problems with food and make sure that at least 3 meals a week include salad or veg - chips are never more than twice a week and I sometimes add salad as a side depending on what goes with the chips. If it's a bad week there might be pasta, something with rice (really bad week that has rice). The toast and sometimes sandwiches are a cop out because I need to have a get out clause for a couple of nights a week. Quote Share this post Link to post Share on other sites
A-S warrior Report post Posted July 29, 2012 having a shoot of red wine can boost the appitite, also dark chocolate boosts ones appitite too. Quote Share this post Link to post Share on other sites
darkshine Report post Posted July 29, 2012 Unfortunately I like neither... Maybe I should start a what Darkshine cannot eat post... Then another for the way things are cooked... This could become a highly obsessive blog type thing Quote Share this post Link to post Share on other sites
trekster Report post Posted July 29, 2012 Allergy tests can come up negative because gluten and dairy can be an addiction rather than an allergy. Also it can take sometime to adjust to new foods and alternatives. There is something called 'oral allergy syndrome' where your mouth is really sensitive to certain foods. Hope the zinc does help. Can you get CBT for your vomit and food phobias? Quote Share this post Link to post Share on other sites
A-S warrior Report post Posted July 29, 2012 Unfortunately I like neither... Maybe I should start a what Darkshine cannot eat post... Then another for the way things are cooked... This could become a highly obsessive blog type thing go for it,i,ll be a regular contributer to the topic. Quote Share this post Link to post Share on other sites
