Do you have this or have heard of this?

Has anyone after having illness or brain injury found yourself disengaged with food. I don't have any craving for food I don't have that oh I could just eat that feeling. I can't cope with sweet food, and savoury food either has no taste or a twang. So I have to stick to bland food, in small portions. If I try normal portions of normal food, my brain feels like its in a washing machine.

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  • I eat because I have to and will eat what is put in front of me, so I need to portion control it because I rarely feel full.

    I used to love chocolate but it is all mainly very bitter now, drinking chocolate is ok if made with milk.

    So, I don't think it's unusual it depends where in your brain the damage is because your brain determines your appetite.

    Janet

  • I eat because I have to as well Janet, I think my damage is in my brain but also in my taste buds. Because one relies on the other, my eyes are saying you should recognise this but the brain and taste buds aren't working. It is horrible when say there's a dinner plate of food pit in front of me. The only way I can describe it, is it is like my brain is in a washing machine. My brain has felt like that when they tested me. They asked me to name as many animals in one minute. I got to six and then I went blank and the same when they asked me another question. I have paralysis in my face and I try to joke and say its natural botox that at least I won't get wrinkles lol

  • After my brain haemorrhage I also disengaged with food. When I did feel hungry or family/doctors were concerned about my eating I went back to my childhood days and fancied the food I ate then. I was 48 at the time and it seemed odd to others that eggs and soldiers, toast and butter even bread and dripping were the only things I wanted. Hopefully your feelings will pass, mine did after about a year. When my appetite came back it was not has before, but enough that i can enjoy food in all its different flavours. 😃

  • Hello cindy, Jules here

    I had to reply to your post because its something i hadnt thought of before - going back to childhood likes and dislikes with food. Also the word 'disengaged' with food explains it well.

    I have a chunk of memory missing, i have to remind myself i have lived the last 20 years and wonder if this is what i am doing.

    I am going to have a think and see if i can recall what my likes and dislikes were when i was a kid.

    Thanks for that.

    Kindest regards

    jULES

    x

  • You tend to eat what you can cope with. I have had this problem with recognising or the taste of food for six years. The smell of food has also been heightened, and if I smell say strong food, greasy etc it makes me feel sick. I think I've come to terms with it, at least I've been checked and told by my drs that what I am eating is healthy and my bodies getting what it needs. I don't think I'd honestly want to go back to eating sweet things. I just wandered if anyone else had had this.

    I'm glad your problem cleared up

  • It's a common issue after a brain injury. I was in a 4 bed ward when I went into rehab and all four of us had either lost our sense of smell or taste (or both). Mine weren't actually lost, more 'corrupted', so that my favourite perfume smells revolting and favourite foods (tomatoes, any fruit all red meat) have a strong chemical taste.

    But my appetite has never faltered ; I just have to avoid certain foods owing the to dreadful taste. I always loved lamb roast with mint sauce and recently decided I WOULD enjoy it, come hell or high water. All I can say is, after cooking lamb chops & all the trimmings....................my visiting fox had a special treat that night !

    You're definitely not alone in this Angie....................xx

  • Its so reassuring Cat x

  • Hello Cat - Jules here (just before i go off for a cat nap) wanted to tell you 2 things before i forget:

    Do you recall your post about getting a push bike after your Bi and falling off ? I wanted to tell you i did exactly the same, but i landed with my head inside a Newcastle City Council Poo bin. Not good.

    The other thing was a question to everyone:

    I went to a clinic the other day and the lady said 'have you ever been asked what you would say to someone in your position - what you think they should be doing ?'

    Its interesting. My 'bubble' is so small these days - i am a little worried if i think about it too much it might make me sad as it might end up a list of things i should but cant do. Maybe i will leave it but wondered if anyone else had done this ?

    Cat - do you have frogs in your garden ? Are you OK ish ?

    Jules

    x

  • Yes I do remember Jules, and I'm happy to say my fall didn't involve a poo bin ! Also, I seem to have gained more confidence since the early days so use my bike more often ; it's odd but my balance is actually better on the bike than when I'm walking.

    To the 'What would you say' question I'd have to say 'Play it by ear, one day at a time and accept your new status by never trying to recreate the past'.

    And yes Jules, I do have frogs in my garden. I don't have a pond, but the horrid woman next door filled a fishpond in when she moved in last year, so I guess they're homeless. They like to hide under the rockery stones and I leave pots of water around for them.

    Hope you enjoyed a good nap m'love .................... no wonder you're such a night owl ! ;-) xxx

  • Part of the problem I had was also no sense of time or feeling of hunger. Over the first two years post injury I lost 4 stone - which wasn't a bad thing :-)

    To make things simpler and achieve that consistency that we all crave (and need) I used to have the same thing day each day and at the same time - I would have the same breakfast, same sandwich for lunch, same type of cake at tea time. The only thing that would alter was my evening meal. The funniest thing was at one of the medical appointments the doctor asked me what I had for breakfast, it took me ages to remember even though I had been having the same thing for years.

    What really changed for me was when I started to cook again driven by the need to get some skills back and trying to have a diet to help recovery.

  • I'm glad things improved for you. I tried baking and cooking and I have no interest. When I bake I don't want to even try the mixture to check I've got it right. My partner has to try it and tell me if it needs anything else, then the baking is either for him or my elderly neighbours. Ive tried different food, I can't cope with anything that has sugar in it, not even mouthwash. I'm starting to get use to it, the only problems I'm finding now is that my stomach seems to object to a food after a while and I have acid reflux which is being managed with meds. I think I need putting in a bag a shaking up :-) I always try to stay strong and I won't let it get me down

  • Oh tell me about it the first time post injury I tried to cook it took me over 3 hours to prepare and cook a cottage pie :-( :-(

    I viewed it more of a cognitive and planning challenge rather than a the need to be the next Masterchef :-) I had to get my wife to taste things as senses were all over the place. I worked out that if I actually measured things properly then it would probably work out OK - and at the time OK, felt very good. It must have taken a year before I could actually produce a meal of good quality and on time.

    Even now, several years later, my tastes vary quite a bit, so I have to be careful how much seasoning I put into food.

  • I had/have this, too. Second anniversary of my haemorrhage yesterday, and I've spent the last six months on a round-the-NHS-in-80-days tour, trying to figure out why I lost 3st in a year. There's nothing physically wrong with my digestive tract, I just don't seem to hold onto anything long enough to get the full nutritional value.

    I have no appetite, and have to set alarms on my phone to remind me to eat, I empathise with others mentioning 'bland' food, because I'd physically balk like a toddler at certain foods, then work myself into an unholy rage by insisting I wasn't to leave the table until I'd cleared my plate. At first, I had some genuinely bizarre avoidance-tactics, I'd go into the kitchen to prepare food, and end up tidying the fridge, or re-organising the cupboards instead, because I was getting genuinely panicky about just not 'wanting' anything. Alarms on my phone, and multi-vitamins every day are my life now, I eat, but there's no real pleasure in it.

  • Hello Anglefish, Jules here.

    The name you use - is it like the fish ? Really lovely fish, my dad used to have some (and some 'guppies' whatever they are).

    Yep, i ha and still do have a big problem with food, not getting the hunger burn in my tummy and food that smells wrong (meat and things).

    If Cat is listening - the smell/taste of Lamb for me is also horrid.

    I lost so much weight and becaame really very unwell last year with it - ended up in hospital.

    Now i eat once a day at around 7pm and usually a bowl of cereal with a banana. Its bland and easy. At least i can now sit down and eat something at the same time my husband does, it feels better doing that and keeps him happy.

    What i really REALLY cant stand now thou is anyone watching what i am eating or worse still commenting on it when i am trying to eat. It makes me very angy for some reason.

    Hope your day is ok

    Jules

    x

  • Hi Jules

    My name is as the fish I think they're lovely I use to have an aquarium and I had guppies they're really small and have beautiful colours.

    I totally get what your saying about food, I hate the smell of food especially any meat. I can't cope with any bread not even breadcrumbs on things.

    I have had so many people all of a sudden thinking they're experts and thought it was ok to tell me what I should be eating. I got sick of hearing about it, it's not as easy as they seemed to think it was. For me its the smell, the amount and not being able to recognise it. On christmas day I managed a four potatoes and some mushrooms (vitamin d) that I'm low in, and a bowl of bland cereal, but it was ok. I joked and said wow, but really it didn't stress me out so that's what matters most.

    Angie x

  • I still have some food related issues, although its not as bad as it was in the early days. For me it is that certain foods don't taste right...anything with fruit, especially citrus, tastes like rotten eggs initially although if I persevere the proper taste will come through eventually...and I do push through the nasty taste because I need fruit in my diet. People who have seen me eat fruit always assume the fruit is sour when I pull a disgusted face...if only they knew LOL

    I don't like meat any more...I hate the smell of it and the texture...and it just tastes wrong. My husband laughs when I tell him all meat tastes like cow anus (and of course I have not knowingly eaten cow anus) but meat tastes nasty and that is the best way I can describe it ;)

    Texturally I cannot stand anything too chewy or doughy...if food is in my mouth too long before I can swallow it, it makes me gag...and eating out is a problem because of the smells in restaurants just turn my stomach.

    I much prefer to cook at home where I can prepare what I know I will eat...and sometimes that might be just crackers or sponge fingers...for some reason when I can't face anything else sponge fingers are a boon...even though they taste of nothing...or perhaps because they taste of nothing.

    I know that food enjoyment is ruined for those whose sense of smell is impaired following BI because taste is linked...

    Nutrition is important to our general well being and I really hope you can find something that works for you... never mind what anything else thinks.

  • Hi its reassuring that there are others with this problem. I was checked by a nutritionist because I was concerned that my body might be missing something, but she said after blood tests that the only thing I needed to increase was my vitamin d. So I feel ok about my eating. :-)

  • Hello Angel and I Forgot (laughable as i have forgotten your 'real' names - cant remember if you ever told me anyway ! PLEASE dont be offended...

    Anyway , its Jules here.

    The thing your talking about with meat - yes i get that about it smelling/tasting like someone is serving you up a plate of ofal (cant spell it sorry). The cows bum as you say.

    My husband eats a lot of meat and the smell is of the particular animal cooking, not the steak or particular joint. The texture too is like something that is so unnatural to be asked to consume.

    I didnt realise there were so many here that are experiencing that after a TBi/Bi. Interesting isnt it. I suppose it means something.

    The other thing is i noticed some people are emphasizing what vitamin the food they are eating a lot - i look at food and think the same - 'this will give me vitamin '

    I eat to stop myself becoming unwell - and because of the therapy i am in the middle of.... i think i told you his words 'you wouldn't go on a long journey without supplies would you'... the words still ring in my ears. So true, and keeps me eating. If people like him are now putting an effort in to help me, the least i can do is not to muddy the waters with my brain being starved of vitamins and the effects it can have.

    Another thing that REALLY made me angry was the GP at first trying to get me to agree to talking to a Nutritionist. For gods sake i am 5o something i know what i am supposed to be eating - thats completely insulting my intelligence and missing the point.

    So, yes, I didn't go . Sorry about the rave.

    By the way - weather here today really lifted my mood - spring sunshine and the frogs will be on their way to my ponds - heaven.

    Wondered how this are everywhere else ?

    Regards

    Jules

  • Hi Jules you not being sure of my name made me smile :-) its Angie but my nickname use to be angelica rugrat or little miss naughty because I enjoyed a laugh. I do miss banter and chats. Its hard to accept when everyone you thought was friends just disappear. But my therapist has said that it takes guts to be friends with someone who's ill, so they weren't made of much, they're loss. The only one who has been true to me all the way through is Coco my shih tzu dog, I love her to bits.

    Everything you have said is exactly how I feel, I to only eat because I need to. A fews months ago I had 3 seizures and was really poorly. I had 3 days where I would not eat, and I started to feel really unwell, and I thought with all my meds I have got to force myself. My partner can eat anything and I have a problem with the smell of his food cooking. He makes my meals for me and puts everything on a side plate. I can manage crumpets (because I can't cope with bread) and poached eggs. So he went to make this tonight I asked for mushrooms and he loaded my plate. I couldn't cope, its made me feel sick.

    I don't know whats its been like here today, I only know that my partner says it was cold. I've been recouperating in my nice warm bed. I love spring and summer I hate winter, we've got some snow drops in the garden and we've planted lots of flowers that I hope will show this year.

    Angie x

  • Hi Jules , do not worry, you didn't forget my name...I don't use my real name online. Initially it was to protect my identity and my career ... but the career went down the toilet ages ago thanks to the BI and now its as much to protect my family and myself from potential repercussions resulting from anything daft I might post ;)

  • now you just know i will never remember you cunningly never told me ... thats funny.

    I know what you are saying, i try to be a little careful, even on here. I broke the trust with a debit card a couple years ago so voluntarily gave it up and all the financial decisions for running the house.

    Jules

    x

  • Hi Angie...

    My nick name is Jules because i was born on the day England won the world cup in 1966 - it had something to to with a man calledJules Vern/JulesVern cup (not sure) and it was July.

    I hate football! but 'Jules' is OK (ish)

    Yes, I know - I have one person from before the crash who does appears still sometimes - she was Is) my best mate. I am 50 (mmm 51 i think) and we met when we were young and quite wild at around 17. Its odd, she hasn't once raised the subject one to one with me, i tried the other day but she politely agreed with everything and said something nice about something else. I have learned that with me, she must feel she has lost a friend. Its very very sad isn't it. But she does drop in every few months to see us. I feel jealous of her because she is what i was, we were similar. Jealousy is a horrible thing, but its part of this 'me' now. I am jealous of every female biker i see. Oh well.

    Angie, please please eat something (anything) BUT DO EAT EVERYDAY- i felt so guilty when i was in hospital, because i had caused 'this one'. the crash wasn't my faulty, but not eating was. I felt the doctors were a bit dismissive of me and i couldn't explain why i wasn't eating so i guess they thought i was an anorexic in the classic meaning. It had nothing to do with slimming - slimming wouldn't improve how my body looks now - beyond that. But my mouth felt like it was sewn together when they asked why i couldn't eat. They wouldn't have a clue what i was on about, unlike here on this forum, where it seems many of us have problems with food.

    On a brighter side, the trauma psychologist totally got it and he helped me back on track.

    Its my husband who is the gardener here - really lovely 'relaxed' overgrown in some areas (for little creatures) and neat and tidy in others. There are 2 small ponds for the frogs and he has just built a small wood shed. One corner of the garden has been designated for a summer house for me this year (maybe). What a spoilt thing i am.

    I love snowdrops, bluebells and snowdrops remember seeing a forest floor full of them when i was a child with my grandma. lovely memories.

    I am just patiently awaiting the frogs now. They make me laugh.

    Kindest

    Jules

    x

  • Jules you sound so much like me, when ever I did see friends they either seemed obsessed with my condition throwing questions all the time. It got on my nerves because I'm still a person, not a condition. My best friend who lived down south said some hurtful things. He was clueless, I said everyone has disappeared and he said well it is difficult for them when your speech is bad. I said how do you think I feel. I totally get you when you say your jealous, I envy people that they can have a normal life, and they bloody moan about, they don't know how lucky they are. I was seeing a trauma therapist when I had all the fiasco with the ambulance service. Two appointments they didn't take me, two appointments they left me waiting to be picked up. When I did see her she did help me. She made me understand my feelings and that I was going through grief and had lost a lot. I'm on a waiting list to see either a therapist at my home or via telephone. Then it cuts out the rubbish ambulance service, and that's a hard thing to say as I worked for them a few years ago. I don't get on with the nhs anymore I've found that because my symptoms don't fit in a neat box consultants dismiss me. Its a good job I'm strong willed and a fighter I won't give in.

    Angie ;-)

  • What do you think about the question the nurse at the clinic asked me:

    'what would you tell the person right now, if it were you advising you as another person' (or thats what she meant).

    Do you think she means i am moaning and should harden up or is she on about something 'deeper'.

    Its a strange thing to ask me to think about, most people i meet are obviously glad they didnt crash. Sounds obvious when i say it. But then, she didnt either did she. Shes lovely, i dont think she meant any harm by it.

    Jules

    x

  • It does sound weird to me it can be taken so many way. I would have to say to her I don't get what your trying to say. I don't think they will ever get what we've been through or dealing with on a daily basis. What they don't understand either is we go through grief for the parts of us that we have lost of ourselves. I think the nurse meant well.

    x

  • I too have a problem I have to force myself to eat some days or I just do not want to cook and when I do I either leave half or bin it , went down to 10 stone once doctor was very worried but then my appetite came back a bit and I put on weight been like this for over 10 years, life on a knife edge or fork

  • I can relate to nearly all of you on what you say about eating

  • Hi Spartan we definitely all seem to be in the same boat, at least we know we're not on our own. The biggest shock whenever I have to explain why I won't accept a sandwich, biscuit or chocolate the biggest reaction is shock that I don't eat chocolate and how they couldn't cope with that. It really doesn't bother me, buying shares in Cadburys will have to wait ;-)

  • so true for over 10 years nobody understands me except this community

    life on a knife edge

  • It can be a lonely place when your shoved into no mans land

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