Or, fear of being sick as it's more commonly known.
I know I'm quite good at writing essays on here but this is something I feel I need to be more open about to get help.
I was at the hospital recently and I was just told by a doctor to eat more red meat and get my anxieties sorted in regards to food. Simple as that is it? I've been scared of being sick (vomiting) from as long as I can remember. Being a toddler, being sick is some of my first memories. You don't know when it's going to happen, and don't know how many times, and you don't know if everytime you feel sick that you're going to be sick, and of course with stomach acid problems and colic growing up I felt sick a lot, which put me on edge all the time and it's stopped me from doing a lot of things in my life, because I'm so afraid it's going to make me sick. I can't deal with the uncertainty and it's made me have a few panic attacks. And of course panic attacks can make you feel sick. I'm constantly going round in circles.
The problem is the NHS in my area can't seem to differentiate between anxiety and autism, in the way where they are trying to get rid of the anxiety so I can eat foods (my diet of 'safe foods' has backfired as I'm having to take iron tablets now, which annoyingly make you feel sick as well) which are good for me. Just want to put me on tablets to help with the anxiety. But how can I get across to them that anxiety is a way of life for me. I've never had a day off from it and probably never will, I just need some help to change my way of thinking. I've tried to eat differently and try new foods but it's a major change to my routine and it's not something I'm used to. I have no idea what will happen if I eat a food I've never had before. Also, when I'm out in restaurants I only have 'safe' foods, which is normally some sort of soup, which I find very boring sometimes. I also can't swallow food so I either chew the food in my mouth until it's obliterated or I have to spit it out, which means I hate eating in a meal scenario because I'll either take forever or I have to spit out my food.
This frame of mind has run my entire life. It chooses where I eat, where I go on holiday, how long I stay at a party, how much alcohol I consume, where I work... Part of my previous job was to move around different businesses helping them out with IT support but in one place it was about 20 minutes outside the city. Even though they offered a free bus service I felt trapped when I was there. I have so many coping mechanisms to deal with this that when I can't use them I panic. I ended up having to pay fuel to drive there most days because I feel like I couldn't escape to somewhere in case I was sick. I don't have more than 1-2 drinks in case I'm sick. I don't go to theme parks in case I'm sick (don't like the crowds but at least I'd like to have the option!). I can't sleep until a certain time at night because one of the worst fears is waking up in the night and being sick (happened once when I was 8 years old at 2am, and for years after that point I couldn't sleep until 2am). I won't eat meat in the restaurant in case I'm sick, also won't eat seafood. Won't eat a lot when on holiday because it's different food and different places so I either don't eat or spend days panicking. I spent 3 days of a two week holiday in Lanzarote in my room because I was just far too anxious.
Luckily my partner is really supportive. When on holiday he was just happy chilling out on the balcony drinking beer in the sun. He's happy as long as I'm happy and sometimes I feel on't deserve that. he as to put up with my anxiety all the time, I don't know how he does it.
Other than trying to actually live my life, the reason I'm brining this up now is because my Mum is getting married in Malta next year. We are all going there for two weeks and the last thing I want to do is ruin my Mums wedding because of my anxieties. I want to be able to sit down and have one meal with my family. My Mum says I can spend the 2 weeks doing whatever made me most comfortable, but I just want to be able to do that one thing for her.
I'm so ashamed, I've spent years trying to cover it up, but I'm really suffering. I don't seem to explain it well when I'm at the doctors and I've been struggling to get psychology help for over a year now (it's still ongoing). It's ok if no one replies to this, I just really needed to take the first step and open up about it in a place I felt comfortable, which seems to be here. I might print this off and show it to my doctor, because then at least I could explain it better.
Feeling nauseous is no fun and that fear just makes it worse! Our daughter (14 years) has suffered all her life with C.V.S (cyclical vomiting syndrome) - she has now become so anxious about being sick that she will avoid things that trigger anxiety i.e. new situations. (She has just recently been diagnosed with autism having been missed by a top expert in speech and language therapy & autism diagnosis at 5 and 8 years.......but that's another story!).
Our daughter takes anti- emetic melts (Zofran-ondansetron) as advised by the CVSA UK association, when she feels nauseous ,because these help to take that horrible feeling away. She is also receiving one to one CBT to understand about feelings of panic i.e. fight & flight and how to find different ways to deal with 'the monster on her back', as the therapist describes it.
I suffer from migraines - had one at the weekend & I felt nauseous - people don't 'get it' unlesss they have been in that situation. There is help out there - great idea to take your post to the GP- it will take off the pressure when you see him/her.
Best of luck,
Yeah, it's not a great combination. I felt very ill for about 3 months, and al l icould eat was oat biscuits. No one could find a medical reason for feeling ill so basically told it was just anxiety, which makes me feel even more stupid. I felt so ill one day my mum took me straight to A&E where they did tests for infections, etc, but, nothing. The panic got so bad I just htought I was going to be sick, but I was in the toilets and nothing happened and just broken down. I had no energy and because I felt so ill I couldn't move and asked for help from a nurse to take me back to my cubicle but she just looked at me and said 'I don't have anything with me to help you' then walked off. I found out later that the nurses and doctors had all thought I had taken drugs (high pulse rate from panic didn't help!). They kept asking me what I had taken but I kept saying I hadn't taken anything, and thought maybe I was lying because my mum was there. I was really confused. I had said no, so why would I lie? It was really hurtful experience, which made me close up about it even more.
It's really getting me down, I can't live like this. I would hate for the rest of my life to be ruled by this, because then I'm not living, just surviving....
Unfortunately the medical profession don't always understand but there are people that do......it's just finding them! Anxiety can make you feel really strange - and if someone sat down with you to explain how the body reacts to stress I'm sure it would make you feel more in control.
I think a lot of nurses and even older doctors don't fully understand autism - I know our GP doesn't but he is near retirement age so I will partly excuse him!! The teaching profession are just as bad in our experience but I do believe the tide is beginning to turn. Our daughter is just getting the help she needs now & we have been fighting for years!
Panic makes my daughter very tired and she has a lot of time off school due to sensory issues and anxiety.It must have been very frightening that the Drs & nurses were not taking you seriously. When the acids are building in her stomach my daughter feels sick in her throat and knows that she needs to rest - do you get these symptoms?
I know you have had a bad experience at A & E but please don't give up as lots can be done to help you feel more in control. A referral to a good counsellor experienced with autism is the way forward - I've seen a lot of improvement with my daughter & I encourage her to talk about things that are worrying her before the problems start spinning round & round in her head. Panic attacks occur in more people than you realise both in NT people & those with autism .......it's just that people don't always recognise what they are.
Have you been tested for anaemia as that can make you feel awful - tearful, tired etc. You did say you were on iron tablets so maybe it isn't just sensory issues that are causing your panic attacks?
Part of the problem is because I'm not getting the full help I need I am wearing myself out. I refuse to take time off work because of these issues, so I get days like today when I'm at work and I'm feeling very on edge today and people keep trying to talk to me and I don't want any of it. I've already slammed a drawer shut, because I'm so frustrated about how I feel. My employer is aware of my problems, but I try to cover it up as best as possible. Probably from years of people trying to 'fix me' and trying to fit in to society. Didn't realise until a few years ago I was a square peg for a round hole.
My ferritin level was taken about a month ago and it was 5. 12-150 nanograms/ml is the accepted levels for it. There is very little iron in my system therefore my body isn't making the protein ferritin to store it. It's mainly because of my diet. I'm a lot better than I was a month ago. Back then I felt like I was trapped in my own body, unable to move or do anything. I'm starting to get my energy back, and, yes I agree that the tiredness is not helping. I'm finding it harder to cope with everyday situations.
I don't know why I can't show weakness. I keep thinking people are just looking at me and thinking I'm puttng it on, I just think if I can walk I can be there. Maybe I also feel greatful I even have a job. I don't understand at all why I do or think these things, I can't make sense of it. But al lI know is I'm making myself ill. I just needed to admit I need help.
Appointment booked with my usual doctor, but she's not available until 5th November. One of the people at the local one stop shop has gone round doctors surgeries in this area, complaining about waiting times for people with autistic problems. I don't know what came of that though. Probably not a lot. I'll just have to try and cope with everything until then, but then at that point she is probably just going to put me back on some sort of anxiety pill. I doesn't help much with the anxiety and the thoughts are still there, so that doesn't really help me.
My level was at 8 a couple of years ago & i was struggling, so no wonder you feel tired! One step at a time.........you will get there!
I think as you get older you realise you sometimes need to ask for help - I'm the world's worst as pride gets in the way! It isn't a sign of weakness, it is a sign of strength so don't feel bad!
It is shocking that you can't get an appoinment until 5th November - is there no way you jump the queue a little - put some pressure on the receptionist to say you need help before then? Pills may help but you also need CBT - I've seen the great help it does!
I'm intrigued by this exchange because I had a phobia about being sick from early childhood, until only a few years ago, but in my case it really meant I couldn't be sick.
This meant in situations where the right and proper think would have been to be sick I just couldn't. If I felt sick I just had to sit it out until whatever made me feel sick settled down.
Have you tried one of the diets like the Feingold diet or the diets suggested at http://fedup.com.au/ ?
I've found that I have food intolerances (pollen fruit syndrome) and have found that my GI system feels much better now that I am not provoking it with things it reacts against.
@Longman, that's interesting, I do exactly the same thing. If I feel ill I will just sit and not move and want to be left alone until what ever is making me feel ill subsides.
Also, I've tried many diets, I seen dieticians from when I was young, but it hasn't made much difference. I'm on omeprazole, but I have noticed that I feel worse if I eat strong onions or really fatty foods, so I try to stay away from that. The other problem is I will only eat what I see as 'safe foods' and a lot of these foods on these diets aren't on my 'safe' list, so I've end up not eating a lot. I need help with that.
My appointment is next week now. Since I started this post I've realised that some of the sickness fear is probably related a bit to PTSD, possibly, because I remember having gastroenteritus when I was about 8 years old and I could not stop being sick. I remember crying to my Mum asking her, when will it stop. It also disrupts my routine, I can't tell when it's going to happen, how many times, it's just all too confusing and unnerving for me to deal with. I remember once, when I was about 4/5 years old, being sick in the car whilst waiting at the doctors for my brother (he's on the spectrum and his clumsiness got the better of him and he landed on a barbed wire fence) and my mum's then boyfriend's mum, if that makes sense, tried to catch it all. Not long after that she became very ill with kidney and liver failure and died. For years I thought I'd killed her!
Actually just thinking about sick and typing about it is setting off my panic feelings....
I fear being sick too. Although I am very rarely sick or ill, I remember every instance of being sick, and I hate the 'feeling sick' feeling. If anyone hints they have or have recently had a stomach bug, I am out of the room in an instant.
Same, can't stand feeling sick. Also, if anyone mentions stomach bug I will keep well away and wash my hands as much as possible. Sometimes I'm scared of changing my diet to feel better, because it might mean I feel better, but then if I do start to feel sick it can only be because I'm going to be sick. At least if I feel sick everyday I can deal with it, I know what's causing it then. Which strangely makes me feel better, when it doesn't really.
I've only been sick 3 times in 20 years, might've been more but I try all I can to avoid being sick (watching what I eat, not going on car journeys, not spending long drinking at parties, keeping away from sick people). Because it's not often I'm not used to it so when I feel a feeling I'm like, is that me going to be sick? No? Wait, it's indigestion.... I can't tell the difference which puts me on edge.
I definitely need help with this because if I want to move on with my life and have kids etc, I'm going to have to do something because how am I supposed to go through morning sickness? Or, deal with my owns kids if they're sick?
I think too much, that's my problem. Lol.