One of the side effects of living with this condition is that you never really have an appetite. You get hungry and you eat. But you don't look forward to eating. If I didn't have to eat, I wouldn't. I am not the sort of person who gets excited about food. Actually that's not true. Freshly cooked crusty bread with butter on and a nice chunk of chedder cheese is something I do enjoy and as far as possible I get excited about eating it. But that's about it. Sometimes I get a craving for chip shop chips, or a bar of Dairy Milk chocolate or some crinkle cut crisps (ready salted), but I don't "enjoy" food in the same way people who don't have this condition do.
But I do think about food sometimes and in recent months this has increased considerably. I think about food that I don't eat and wonder what it tastes like. There is a curiosity which hasn't been there before. Its also seems to be strange food with (apparently) very strong tastes. Many of which are foods you either love or hate. When I started eating Heinz cream of tomato soup and fried button mushrooms (not together as a meal just new foods) friends and family were amazed as these were strong flavours. My Dad also constantly reminds me if I can drink Lager (Budweiser) then I should be able to eat anything as I clearly have no taste buds! Cheek!
So what do I think about? I think about beetroot. I am fascinated by the colour and firm yet soft texture. I wonder what "Beetroot" tastes like. I also think about red peppers, radishes (I know weird right!), sweetcorn and fleshy fresh fruit like water melon or similar. I never think about green vegetables. The very thought of greens makes me feel sick and I feel a tightening of my chest.
I wonder what pasta and rice tastes like. Is pasta slimey because it looks slimey and when a piece has fallen out of the saucepan into the sink when draining it feels slimey when I pick it up to chunk in the bin (When I was an undergraduate I shared with other students so pasta was one of their stable foods!). How can rice sometimes be sticky and sometimes fluffy? What does lasagne taste like? It looks meaty and filling and tasty. Is it? How strong is the tomato sauce? Is it "spicey" or "herby"?
I think about stir-fry. Are the vegetables crunchy? What does the sauce taste like? Is it hot? Does soy sauce taste salty, sweet or sour? I think about how grown up it would feel to have stir-fry and rice for dinner. And how healthy that would be.
In the summer I think about quiche. I like cheese so would I like quiche? I think about having it for dinner on a hot summers day with boiled new potatoes and a salad with beetroot. I don't eat any of these things, but I remember my Mum use to eat this sort of thing a lot in the summer because it was cool and refreshing, sometimes swapping quiche for slices of ham or a piece of chicken. I do eat chicken and certain types of ham. I wonder if I would ever be able to eat this sort of thing. Considering raw tomatoes make me physically sick, makes my skin turn bright red and itchy and gives me an upset stomach the salad might be an issue! The smell of cucumber also makes me want to gag.
I think about Chinese food and the different little cartons that come with a take-away. When friends or family have it (while I have something from the chippie) I wonder what the strong food smells are coming from. The sauce? The meat? I wonder about the tastes. I like the idea of ordering a "Chinese" with everyone else. I think about pizza and whether I could cope with the tomato base given my allergy? I like bread and cheese, and I also like ham and mushrooms so could I eat a pizza? Would it be moreish like cheese on toast? How cool would it be to go to Pizza Hut or Pizza Express and order like everyone else or to order a take-away like "normal" people.
I wonder about yoghurt. Does it taste as bad as some of them smell? Are they very sweet? Are some of them nice? Are they watery like milk or thick like ice cream?
I think about soups with bits in like chicken and vegetable etc. I tried mushroom soup once and the smell of it cooking was putrid. I couldn't bring myself to taste it when it was cooked as I was gagging far too much. Its a horrible smell! But what about other soups? Could I eat them, even with vegetables in? I wonder about pumpkin soup. Every Halloween friends on facebook talk about getting pumpkins and then making soup out of the inside stuff which they removed before carving. What does it taste like? At the same time of year I also think about butter-nut squash and wonder what the hell it is! I have seen photos in magazines of some sort of bakes with pumpkins and butter nut squash and wonder what they are like, while fascinated by the colours. I think about aubergines and wonder what you do with them and what do they taste like? Sour? Oniony? Savoury? The deep purple colour and the shiny skin is curious. I have heard of stuffed peppers, do you stuff an aubergine?
I never wonder about greens as I have said, but I also never wonder what cakes or sweet things taste like. I have no interest in adding puddings, cakes and sugary sweets to my diet. They hold no interest. I like Walls Vanilla Ice Cream and I eat Dairy Milk chocolate and Maltesers. Nothing else sweet, unless you count my breakfast cereal - Frosties. I really don't have a sweet tooth.
Monday, 9 December 2013
Thursday, 28 November 2013
Branston Pickle - well sort of!
Branston Pickle represents a real problem area of food for me. Firstly its a bit like a sauce and I do not eat sauces. Secondly its got bits in and those bits are vegetables which is even worse. Thirdly the smell of it is very strong and it looks.... well.... it looks as though it has already been eaten once!
It is most definitely not a safe food for me. It is also one of the last things I would ever think of trying. However last week I was eating dinner with Dad and we were having cold chicken which I do like as its plain and not threatening. To liven it up for himself, Dad was having some Branston Pickle with his. I was curious as to why he liked this "sweet pickle" and asked him what it tasted like. Unhelpfully he replied "it tastes like Branston Pickle"!! He then suggested I try a bit. Hell no! He then said "don't try the bits just dip your finger in and taste the sauce". Hmmmm....... Could I do that? I was curious. But was I curious enough to do that?
Well in a moment of abnormal bravery I opened the jar and plunged my little finger in. I thought I would do my usual "very tip of my finger to only get as little as possible on my finger to try" style. Instead I stuck my finger in the jar quite a way. Without really thinking I then stuck my finger in my mouth and licked all the brown pickle off! My Dad was shocked I had done it, but not as much as I was!! I then did it twice more (with different fingers obviously!).
Now I have not suddenly converted to eating pickle nor did I try any of the bits which are part of the pickle. However the brown sauce bit was not disgusting. I didn't retch and I didn't feel sick afterwards. It was a strange taste. I didn't dislike it, but I didn't like it either.
Its not really a successful tasting in the sense that I have added a new food to my diet, as I haven't. But it is a success that I managed to try it without triggering a panic attack, I could put it in my mouth, shut my mouth and swallow it and think about the taste! I have no idea why this worked or whether I did anything differently. I can only hope I have other successful tastings which might add to my diet and of course the new treatment might help.
It is most definitely not a safe food for me. It is also one of the last things I would ever think of trying. However last week I was eating dinner with Dad and we were having cold chicken which I do like as its plain and not threatening. To liven it up for himself, Dad was having some Branston Pickle with his. I was curious as to why he liked this "sweet pickle" and asked him what it tasted like. Unhelpfully he replied "it tastes like Branston Pickle"!! He then suggested I try a bit. Hell no! He then said "don't try the bits just dip your finger in and taste the sauce". Hmmmm....... Could I do that? I was curious. But was I curious enough to do that?
Well in a moment of abnormal bravery I opened the jar and plunged my little finger in. I thought I would do my usual "very tip of my finger to only get as little as possible on my finger to try" style. Instead I stuck my finger in the jar quite a way. Without really thinking I then stuck my finger in my mouth and licked all the brown pickle off! My Dad was shocked I had done it, but not as much as I was!! I then did it twice more (with different fingers obviously!).
Now I have not suddenly converted to eating pickle nor did I try any of the bits which are part of the pickle. However the brown sauce bit was not disgusting. I didn't retch and I didn't feel sick afterwards. It was a strange taste. I didn't dislike it, but I didn't like it either.
Its not really a successful tasting in the sense that I have added a new food to my diet, as I haven't. But it is a success that I managed to try it without triggering a panic attack, I could put it in my mouth, shut my mouth and swallow it and think about the taste! I have no idea why this worked or whether I did anything differently. I can only hope I have other successful tastings which might add to my diet and of course the new treatment might help.
New Treatment??
I have finally had my appointment with my GP. From the way it started I was convinced it wasn't going to go anywhere, particularly when the first thing he offered me for my weight issues was surgery!!! Er... no! I tried to explain that it wouldn't work as I would still be eating the wrong food. He smiled and said it would work as I physically couldn't eat a lot! Grrrr! New GP! Had to explain that my weight gain was not due to eating large amounts of food and in actual fact would prefer not to eat at all as I do not find food appealing. I have weight issues because the foods I can eat are so unhealthy and after 31 years I have baggage!
I eventually got him to look back through my records where he found the Neo Food Phobia diagnosis and the counselling I was sent for. As far as my records were concerned I had been cured!! That made me wonder exactly what my old GP had been doing for the last 6 years when he told me he was "writing letters" to various specialists!! Clearly lies!!
Anyway once I had managed to get my new GP to listen I then had the task of explaining what Neo Food Phobia is. Its not the most easiest thing to explain as to many people it sounds ludicrous. However as I was trying to explain, he suddenly said, "are you sure its not SED"?!! Hooray! I explained that I did think my condition was more SED as it was not just limited to new food. Anyway, he has agreed to refer me for treatment and believes Cognitive Behaviour Therapy would help. So he is sending me for an assessment to see if our local Cognitive Behaviour Therapists will take me on. If not he has reassured me he will keep pursuing this until he can find something to help me, so I can get fit, lose weight and start living my life more fully without the restrictions of SED!!
By the end of my appointment I felt very positive and hopeful. I have no idea if Cognitive Behaviour Therapy will work for me or not. I know some people who have had it for other things and it helped them, so I am open minded. Judging from other forums and Facebook groups however it seems as though the only affective treatment is a form of hypnotherapy. Again I am open minded but as the sessions are over £200 at the moment that is not something I can pursue. So I will give my GP a chance and see what he comes up with.
I will of course keep you updated on this new treatment, so for now, wish me luck!!
I eventually got him to look back through my records where he found the Neo Food Phobia diagnosis and the counselling I was sent for. As far as my records were concerned I had been cured!! That made me wonder exactly what my old GP had been doing for the last 6 years when he told me he was "writing letters" to various specialists!! Clearly lies!!
Anyway once I had managed to get my new GP to listen I then had the task of explaining what Neo Food Phobia is. Its not the most easiest thing to explain as to many people it sounds ludicrous. However as I was trying to explain, he suddenly said, "are you sure its not SED"?!! Hooray! I explained that I did think my condition was more SED as it was not just limited to new food. Anyway, he has agreed to refer me for treatment and believes Cognitive Behaviour Therapy would help. So he is sending me for an assessment to see if our local Cognitive Behaviour Therapists will take me on. If not he has reassured me he will keep pursuing this until he can find something to help me, so I can get fit, lose weight and start living my life more fully without the restrictions of SED!!
By the end of my appointment I felt very positive and hopeful. I have no idea if Cognitive Behaviour Therapy will work for me or not. I know some people who have had it for other things and it helped them, so I am open minded. Judging from other forums and Facebook groups however it seems as though the only affective treatment is a form of hypnotherapy. Again I am open minded but as the sessions are over £200 at the moment that is not something I can pursue. So I will give my GP a chance and see what he comes up with.
I will of course keep you updated on this new treatment, so for now, wish me luck!!
Tuesday, 5 November 2013
Selective Eating Disorder?
After doing a bit of research online I came across pages and forums linked to Neo-Food Phobia concerned with Selective Eating Disorder or SED. The more I read about this condition the more I feel this is a more accurate description of my problem, particularly as some descriptions included sufferers being particular with brands and how food is prepared, as well as texture and smells. This is very me, however unless I get re-diagnosed I cannot go too far down this route, but hopefully my GP will put me on the path where I may get re-categorised as having SED (although it does appear to be the same thing with a new name!).
For now here is a description of SED taken from http://treatmentsforthemind.co.uk/selective-eating-disorder-sed
"SED is sometimes also labelled as neo-phobia (or a fear of the new), although I feel this phrase is misleading as most of the clients seen will only tend to have a phobia with certain new foods and nothing else. SED is a true phobia that just happens to be associated with foods rather than animals, objects or processes. As such, it is not mere ‘fussy eating’ which tends to just be a conservative stage during most children’s development. Fussy eaters are often merely picky or play on the preferential treatment or special attention they get, but they are not phobic! . Fussy eating therefore does not involve a phobia, so SED often gets overlooked and misdiagnosed by doctors and therapists, as they confuse one with the other. In simple terms due to an event or phase in the past, pain has been associated with certain foods and the system refuses to venture past it’s safe foods. The more this situation persists, the greater the belief that one is ‘unable’ to then eat new foods because of the lack of past historical successes. Fortunately speedy help is at hand".
For now here is a description of SED taken from http://treatmentsforthemind.co.uk/selective-eating-disorder-sed
"SED is sometimes also labelled as neo-phobia (or a fear of the new), although I feel this phrase is misleading as most of the clients seen will only tend to have a phobia with certain new foods and nothing else. SED is a true phobia that just happens to be associated with foods rather than animals, objects or processes. As such, it is not mere ‘fussy eating’ which tends to just be a conservative stage during most children’s development. Fussy eaters are often merely picky or play on the preferential treatment or special attention they get, but they are not phobic! . Fussy eating therefore does not involve a phobia, so SED often gets overlooked and misdiagnosed by doctors and therapists, as they confuse one with the other. In simple terms due to an event or phase in the past, pain has been associated with certain foods and the system refuses to venture past it’s safe foods. The more this situation persists, the greater the belief that one is ‘unable’ to then eat new foods because of the lack of past historical successes. Fortunately speedy help is at hand".
Wednesday, 30 October 2013
How would I describe Neo Food Phobia?
For those of you who are familiar with my other blog, you will know in April 2012 I used my blog to confess to having the eating disorder, Neo-food phobia. I explained what this disorder was and how it presents itself. Then in later blogs I talked about how it affected my everyday life.
I am now at the point when I am attempting to get my GP to help me fight back (again!) after being told by a locum GP that treatment for this condition has moved on since I was diagnosed 7 years ago and that there should be something to help me. I thought it would be useful to start a blog devoted to my current attempt to hopefully successfully overcome this disorder while also recording the reality of living as a Neo-Food Phobic. I will share as much as I feel able to, about any treatment my GP arranges and any attempts at trying new foods. I hope this will encourage me to stay strong and stick with this instead of getting frustrated and giving up as I have done in the past. I also hope that if any other Neo-Food Phobics read this blog they will know they are not alone and that perhaps there is hope in new treatments.
Here is my original blog about Neo-Food Phobia:
"I have shared some of my opinions, my love of books and craft and history, my uni work and my life with my friends. But one thing I have kept purposefully secret. I have kept it secret because its embarrassing and difficult to understand if you don't have it or are close to someone who has it. However I have decided to talk about in the hope of spreading awareness and understanding. The secret is I have an eating disorder. However unlike the infamous three of Anorexia, Bulimia and Over Eating, my eating disorder is not so well known and definitely not met with understanding and sympathy when revealed in the same way the infamous three are. I have something called Neo-Food phobia. In simple terms this means I have a fear of trying and eating new foods. Usually this disorder gets brushed off as "fussy eating" or the "picky eating" syndrome. A lot of people even laugh it off, denying it is a real thing! Well as someone who has suffered with this for 30 years, I can honestly tell you its a very real thing!!
Usually this disorder sets in between the ages of 2 and 5 when a child is going through crucial development stages including their relationship with food. Something happens that interrupts this process and the natural development is halted or even stopped. This is particularly noticeable when you find yourself as an adult saying you won't eat something because it has bits in, or has a sauce on it or it or has green vegetables with it! Psychologically speaking the child suffers a traumatic or stressful experience where they react by exerting control over the only thing they can, which is what they eat. Alternatively they associate a negative experience with a particular type of food. Luckily Neo-Food phobia is becoming more and more understood so children with this disorder are being identified at a younger age and receiving the help they need to correct this disorder and not carry it into adult life. The problem is this change is only just happening now. When I was a child and for hundreds of other Neo-Food phobics this condition was not understood when they were children and they are now walking around as adults still with it. To add to this, Neo- Food phobia is only just being recognised as a condition found in children. To get this diagnosis as an adult takes forever. It also means there isn't really any treatment for adults with this disorder.
For me I was about 3 years old when my eating problems started. They continued on until I was about 7 years old. By then the damage was done and my range of foods has not really changed or developed since then. With no understanding of this condition I was labelled a fussy eater and that was that. I was finally diagnosed as a Neo-Food phobic when I was 24, only 6 years ago. The reality of this disorder affects every aspect of my life. It is not simply being a bit fussy or particular about what you eat. When people find out it is usually by me saying I don't like something for the 100th time and question why I can't just try something or how do I know I don't like something if I haven't tried it. If only they could understand!
Being a Neo-Food phobic means that trying new food is almost impossible. Even the thought of trying something new can trigger a serious panic attack. For me there are various stages of trying a new food. To actually put something in my mouth, chew it and swallow it is an amazing achievement. That's without any discussion of flavour or whether I like it! The panic usually sets in as soon as trying something raises its head. You start to breathe quickly, your heart beats faster, you get very hot and sweaty, you start to feel sick and start to shake. This is before you have even put something on the plate. In order to try the food all these elements have to be overcome. You lift the food to your mouth, but you cannot get your brain to open your mouth. Its clamped shut. You may consciously be thinking you want to try the food but sub-consciously your brain is having none of it. It reacts by releasing large amounts of adrenaline into your blood stream, it's natural reaction to fear, the fight or flight response. However despite your fear your not going to run away as its only a piece of fruit or a spoonful on pasta for God's sake! This means the adrenaline doesn't get used. The adrenaline makes your heart beat faster, your breathing quicker and as its not being used up, makes you feel queasy too. If by some miracle you get the food in your mouth now you have to close your mouth and chew. At this point the panic attack really gets going and your throat starts to tighten and the saliva that you desperately need to help chew seems to disappear. Then the retching starts. Sometimes you can hold it back but most of the time this leads to vomiting and game over. If you do fight it and manage to chew, cope with the new textures and flavours and then swallow, one of two things happen. One, the piece of food comes back up at lightening speed or, two, full panic attack, trouble breathing, retching, crying, shaking etc. Only after this can you think about such frivolous things such as did you like it!".
(April 2012).
I am now at the point when I am attempting to get my GP to help me fight back (again!) after being told by a locum GP that treatment for this condition has moved on since I was diagnosed 7 years ago and that there should be something to help me. I thought it would be useful to start a blog devoted to my current attempt to hopefully successfully overcome this disorder while also recording the reality of living as a Neo-Food Phobic. I will share as much as I feel able to, about any treatment my GP arranges and any attempts at trying new foods. I hope this will encourage me to stay strong and stick with this instead of getting frustrated and giving up as I have done in the past. I also hope that if any other Neo-Food Phobics read this blog they will know they are not alone and that perhaps there is hope in new treatments.
Here is my original blog about Neo-Food Phobia:
"I have shared some of my opinions, my love of books and craft and history, my uni work and my life with my friends. But one thing I have kept purposefully secret. I have kept it secret because its embarrassing and difficult to understand if you don't have it or are close to someone who has it. However I have decided to talk about in the hope of spreading awareness and understanding. The secret is I have an eating disorder. However unlike the infamous three of Anorexia, Bulimia and Over Eating, my eating disorder is not so well known and definitely not met with understanding and sympathy when revealed in the same way the infamous three are. I have something called Neo-Food phobia. In simple terms this means I have a fear of trying and eating new foods. Usually this disorder gets brushed off as "fussy eating" or the "picky eating" syndrome. A lot of people even laugh it off, denying it is a real thing! Well as someone who has suffered with this for 30 years, I can honestly tell you its a very real thing!!
Usually this disorder sets in between the ages of 2 and 5 when a child is going through crucial development stages including their relationship with food. Something happens that interrupts this process and the natural development is halted or even stopped. This is particularly noticeable when you find yourself as an adult saying you won't eat something because it has bits in, or has a sauce on it or it or has green vegetables with it! Psychologically speaking the child suffers a traumatic or stressful experience where they react by exerting control over the only thing they can, which is what they eat. Alternatively they associate a negative experience with a particular type of food. Luckily Neo-Food phobia is becoming more and more understood so children with this disorder are being identified at a younger age and receiving the help they need to correct this disorder and not carry it into adult life. The problem is this change is only just happening now. When I was a child and for hundreds of other Neo-Food phobics this condition was not understood when they were children and they are now walking around as adults still with it. To add to this, Neo- Food phobia is only just being recognised as a condition found in children. To get this diagnosis as an adult takes forever. It also means there isn't really any treatment for adults with this disorder.
For me I was about 3 years old when my eating problems started. They continued on until I was about 7 years old. By then the damage was done and my range of foods has not really changed or developed since then. With no understanding of this condition I was labelled a fussy eater and that was that. I was finally diagnosed as a Neo-Food phobic when I was 24, only 6 years ago. The reality of this disorder affects every aspect of my life. It is not simply being a bit fussy or particular about what you eat. When people find out it is usually by me saying I don't like something for the 100th time and question why I can't just try something or how do I know I don't like something if I haven't tried it. If only they could understand!
Being a Neo-Food phobic means that trying new food is almost impossible. Even the thought of trying something new can trigger a serious panic attack. For me there are various stages of trying a new food. To actually put something in my mouth, chew it and swallow it is an amazing achievement. That's without any discussion of flavour or whether I like it! The panic usually sets in as soon as trying something raises its head. You start to breathe quickly, your heart beats faster, you get very hot and sweaty, you start to feel sick and start to shake. This is before you have even put something on the plate. In order to try the food all these elements have to be overcome. You lift the food to your mouth, but you cannot get your brain to open your mouth. Its clamped shut. You may consciously be thinking you want to try the food but sub-consciously your brain is having none of it. It reacts by releasing large amounts of adrenaline into your blood stream, it's natural reaction to fear, the fight or flight response. However despite your fear your not going to run away as its only a piece of fruit or a spoonful on pasta for God's sake! This means the adrenaline doesn't get used. The adrenaline makes your heart beat faster, your breathing quicker and as its not being used up, makes you feel queasy too. If by some miracle you get the food in your mouth now you have to close your mouth and chew. At this point the panic attack really gets going and your throat starts to tighten and the saliva that you desperately need to help chew seems to disappear. Then the retching starts. Sometimes you can hold it back but most of the time this leads to vomiting and game over. If you do fight it and manage to chew, cope with the new textures and flavours and then swallow, one of two things happen. One, the piece of food comes back up at lightening speed or, two, full panic attack, trouble breathing, retching, crying, shaking etc. Only after this can you think about such frivolous things such as did you like it!".
(April 2012).
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