Fear of swallowing/Endoscopy this week

[SarahNM76]

Oops pressed send too soon!

Yes we definitely have to help things along. I feel like I've got stuck in a rut lately. Before Christmas I was doing 'ok'. I was going to the supermarket on my own and felt more comfortable driving. I was going to the pub and for meals and then over Christmas my partner was off for 3 weeks and sitting up till 2am with the telly blaring so I want getting a very good sleep and the next day I felt knackered and like I couldnt be arsed to do anything. My partner isn't very motivating so that made me feel even more lazy. Then the next thing it was new years eve and I was in the busy restaurant feeling tense and on high alert and struggling to eat. The week before I'd eaten my Christmas dinner no problem so it must be anxiety.

Rox your therapist sounds bloody brilliant. Can we come for lunch too 😂 It really does seem like he knows sooo much about it and so much of what you said I can really relate to

Googling and forums aren't the best thing for us to do are they. Loads of people have symptoms and medical tests but they just go with the flow don't they rather than have to analyse and research everything. I've been terrible with googling lately especially over the endoscopy and now hiatus hernias ffs. The endoscopy nurse rang me this morning and I've got to have another one done because she wasn't able to complete it last week because I was heaving. She said this time we'll try a nasal one so my anxiety has been sky high all day. She also mentioned a CT scan because I mentioned last week that I'd lost a stone in weight since the beginning of January. I'd say with me not eating as much then it's pretty obvious that I'd lose weight. I think she could tell I wasnt too keen so she said let's just do the nasal endoscopy and go from there. She mentioned a barium swallow but I told her that no way would I be able to swallow the barium. I asked her if she was concerned and she said she saw no narrowing or blockages in my osophegus (however it's spelt) and she said its very unlikely to be anything sinister. She told me not to worry but that's so much easier said than done isn't it.
My swallowing hasn't been very good today but having all of this on my mind isn't going to help matters is it. I did to drink half a pint of water quite normally this morning but then that 'don't forget you' ve got a swallowing phobia' voice seemed to pop up again 🙄 xx

[SarahNM76]

If you're anything like me then I seem to get too used to things. When I was working I was out at 6am till around 2 I'd come home and either have a nap, watch telly or clean round. I'd cook tea then walk the dog then have a bath and then it'd be tv, chill and bed. On my days off I'd do the food shop, cleaning, relaxing but then I did my ankle last Feb and it was like one extreme to another where I felt trapped and at a loose end and like I didn't want to do anything. I think I'm the sort of person who needs routine but that went out of the window a year ago now and it's a struggle to get back on track.
I also think I'm the sort of person now who needs someone to motivate me...And look after me I suppose.

I know what you mean about the jump when you wake up. It's horrible!! Our partners seem quite similar too. Mine is quite inconsiderate and is so noisy and banging about when he comes to bed. On the rare time that he goes to bed first I'm tiptoeing into the bedroom so I don't wake him up. Sleep is really important to us isn't it because it helps to switch our minds off for a bit.

It is good that they're offering me the tests but the stress is horrendous. I've never been good with things like this. She said today that I might have to be referred to ENT to help the swallowing. She also said about anxiety meds but I just don't know what to do about that. The sedation I had last week made me feel quite calm so I wouldn't mind some of that to take on the high anxiety days 😂

I had my video call CBT today. I don't think I've ever felt better afterwards though. My homework for this week is horrendous. I've got to write a story about my eating issues and then make it into the worst case scenario (I don't even want to say it) then I've got to read it over and over for 30 minutes a day. She said she doesn't know what else to try because I don't seem to be improving with what she's said already which was the reducing the chews by 10 each day 🙄 I don't think she's got a clue. I actually said to her that this phobia is a bit different to say someone who's scared of water where they'd stand by a pool then put their feet in and then get into the water. I said they can get out if they feel uncomfortable or not go near to the water at all but with this one we need to eat and drink. Her answer was she doesn't see how it's any different because a phobia is a phobia 🤔 I was thinking of stopping seeing her weeks ago and I wish I had now. The therapist I pay for is so much better but even she seems stumped with this swallowing issue. I know we have to do it for ourself but we also need some guidance, support and understanding don't we.

I'm exactly the same about being home alone. I had coco pops this morning and then some of those little crackers, ham and cheese (are they dairylea) for my dinner. Tiny sips of drinks through the day. I know I'm so so tense but I find it so hard to relax. I feel hungry most of the time do you? I asked my partner for some tea ideas for the week because I'm ordering a food shop tomorrow. He said Gammon? Lamb chops? 🙄 He also said you just need to say enoughs enough now and just eat 🙄 It took me an hour to eat a corned beef salad sandwich last night with the crusts cut off...xx

[SarahNM76]

Good Morning! I got up early today because I decided to pick my daughter and grandson up (I'm a youngish Nan, I'm 47) to save her walking him to nursery and then to work. The apprehension I feel before going anywhere is ridiculous. I had my glass of water on waking which wasn't too bad apart from some hesitation and then I made a cup of tea and some toast and honey (1 and a half rounds with the crusts off - The dog had the other half with his poached egg). I went into the living room and put Eastenders on...Trying to act 'normal' sat down and it was sip sip sip AGAIN, holding the tea in my mouth and pushing it around a bit until all is left is bubbly saliva then wondering what do I do with it. I ate the toast before Eastenders had finished and then I got ready and went out. I felt full of adrenaline and my ears felt muffled and my head felt tight and the feelings of dread...I'm so sick of it and just wish something would shift so it felt easier. When the traffic lights turned red I sat there counting to try and distract myself from my anxiety and when I saw a line of traffic I was inwardly thinking OH MY GOD!!!!. I dropped them both off and then when I was nearer to home I drove round the streets by me just to stay out for longer. I saw a man walking his dog while eating a banana and at the moment it confuses me now how people can do it..I thought bloody hell he could go on Britains got talent! I'm obsessed with seeing people eating or drinking. Its like on Eastenders I watch that Linda knocking back the drinks and think how does she do that???!! I watch people chewing and count how many times they do it. Its really taking over everything so no wonder I'm struggling.

Yes I've seen that CBT is supposed to be good for this. I just think I've ended up with a therapist who is very basic and doesn't tailor make things to suit me. I agree 100% about how writing out a worse case scenario thing doesn't sound very helpful. I want and need less anxiety, not more!

It sounds like you're doing really well Rox. We have got to push ourselves haven't we but this one is such a difficult and scary phobia. Another phobia of mine is rats and I think it'd be so much easier to deal with that one. Are you completely ok with drinking? Like can you just drink a glass of something with no hesitation? I wish I could because I always used to have a drink with me but now I have coffee, water and some berry huel here and I just keep sipping them through the day but thinking about every swallow.


I'm in Stoke-on-Trent, where are you?? it would be so nice to meet up wouldn't it. Nobody understands this unless they've had it themselves. I can't even say that I've got friends any more. I think when you decline invitations or distance yourself from people then they stop bothering don't they....Maybe they weren't proper friends in the first place.

I've just done the food shop online. Its bloody annoying when we see all these foods and drinks but then realise that we struggle to eat them ffs x

[SarahNM76]

Thank you. I find it hard to praise myself up or see things as an achievement when I don't enjoy it. If I felt fine this morning then I'd maybe feel like I'd turned a corner but it's as if I do everything with gritted teeth and then think thank god for that afterwards. I know I need to do more and try harder but when it doesn't seem to get any easier I just think why keep putting myself through all this, but at the same time I'll be at home and telling myself you need to do something. I put way too much pressure on my self. Yes I see what you mean about us being stronger than others. Every day is a challenge for us isn't it but we try our best to face up to the challenges.

I think I usually eat my breakfast in that amount of time. Like cereal or toast. I think a fry up would take 2 hours 😂

Reflux is vile isn't it. Have you suffered with it for long? I've had it for years and for some strange reason it gets worse around ovulation and menstruation...Have I said that before? It doesn't take much to trigger it off. I definitely say the tomato sauce in the pasta could trigger it. So can anxiety and also with all of this chewing are we swallowing air or creating more acid?? I find that the pains move around so it can feel like it's in my throat, chest, back, stomach...Horrible!!

I've just had a packet of those mini chocolate fingers, like the size a child would take to school and they were hard work. I think there was 8 and I ate the first couple ok but then I felt like I'd got too much saliva and I think chocolate makes it thicker doesnt it so I was just sat here with my mouth full trying to swallow a bit at a time...Its got to be nerves and anxiety hasn't it to be like this rather than a physical thing? I've also noticed when I swallow sometimes that I lift my right leg up or put my hand a couple of inches away from my mouth 🤷*♀️

Hopefully the doctor will be able to give you some support. Let me know what they say please. I wish there was a medication that just took the edge off and calmed us down but they don't prescribe things like that anymore do they. It always seems to be propranolol or antidepressants. Yes I saw on my leaflets about not having the omeprazole type things 2 weeks before the endoscopy. Did you say yours is the 28th?

Is Banbury near Northampton? I think my cousin moved to there.
Oh I was the same with food. Always picking and never wanted to leave any of my meal. Facebook memories keep coming up and I see these meals and desserts and drinks that I had and places that I'd been to and I think how have things got like this now. Then I try to tell myself that I've been like this before all of those memories so I can do it again.

This is my first bottle of huel too. I didn't expect it to be as thick as it is and I chewed mine too then sat holding it in my mouth. I think back to all of the people who I used to go to at work. I don't know if I've said this before but I was a community carer so saw all kinds of people with different health issues or disabilities and they could all swallow. One woman who was 100 would be lying in bed and she'd put about 10 tablets in her mouth, take a mouthful of water and swallow the lot 😳 Another man with motor neurone couldn't move a muscle on his own but could eat fish and chips and drink gallons of tea. He just needed us to feed them to him.

I was just thinking I'm sure I wrote a post on here when I had it before but it was a different username. I wonder if I can find it 🤔 xx

[SarahNM76]

I don't know what those emoji as are all about on my last post 😂 🤔 Have you weighed yourself lately? I think you said 5lbs when we last mentioned it. Mines a stone since the new year and I don't like how the nurse was all you need a CT scan because of the significant weight loss. Surely if we're eating less we'll lose weight. People who are dieting lose weight in a short space of time especially at the beginning don't they. Its not as if we're losing weight but still eating how we did before.

When you say sat in your throat do you mean before you swallow or after? I get where I feel like it's gone down in to my throat but I haven't swallowed yet so then I either have to make a quuuu noise with my throat to push it out or try and swallow it quick. I've noticed I'm burping more but I think we must be swallowing alot of air while we're like this. I'm trying to eat a jacket potato but I feel so tense. I must swallow mushy food less than the size of a 1 pence piece so nobody can choke on that surely...Or the liquids! I think we've just go to try and go for it haven't we but it's so so so hard. I was expecting a drink and biscuits after my endoscopy and I wanted to see if I was any different in a hospital but they didn't give me anything...Typical!

I wonder if the hand to mouth is a nervous reaction or something. I also get a jolt of panic sometimes if I feel like I've swallowed something before I was ready. Like the feeling you'd get as a kid of you swallowed some chewing gum...I have actually read to chew gum with this because it'll make us keep swallowing our saliva. It's also meant to help reflux apparently. I bought some gaviscon double action yesterday because I read that's what doctors usually recommend at first for hernias because they coat the stomach more than other antacids do.

I've never really been a super quick eater and I was the sort who if the taxi came on a night out I couldn't neck my drink and I'm crap at doing shots 😂 I've always been a bit aware of swallowing. When I lived at home we'd sit round the table and if someone coughed my dad would jump up and shout are you alright so I'm thinking he had anxiety about it too. I never gave my kids boiled sweets or things like that.

It's horrible that we're going through all of this. The pains could be reflux, tension, anxiety, even from all this frigging chewing. I've realised as well that I have to be sitting upright to eat and drink. It seems ages since I was leaning back on the settee with my feet up while stuffing my face and maybe even talking to my partner or on the phone.
I remember when I had this years ago I'd watch come dine with me sometimes when I was trying to eat and I'd think how can they eat, drink, talk and laugh all at the same time.

Has the doctor been in touch? Xx

[SarahNM76]

I read these anxiety books by Dr Claire Weekes, have you heard of her. She wrote them on the 60s and 70s but she knew so much about anxiety. She says in one not to weigh yourself because as soon as you start feeling better the weight will come back on. It just seems pretty obvious that if we used to eat double or more what were eating now then we're going to lose weight aren't we. Maybe we shouldn't worry about that part of it.

Have you decided if you'll have the sedation? I didn't feel like it did much for me but saying that I can't remember going from the endoscopy room back to the bay where I had to stay for a while and I did feel quite calm for the rest of the day. I know that the next day I said to my partner that I felt like I could still feel the tube in my chest. I am very very hyper aware though to the point where I think it's my mind rather than reality. I didn't have a sore throat or cramping pains like they say people can have afterwards due to the tube and the gas they pump in. Is your appointment in the morning or afternoon? I went in there at 13.45 they called me straight through then a nurse took my blood pressure then sent me to a bay. Then another nurse came in to put the cannula in and I was sat there for a while. I didn't even have to wear a gown. At about 3 they took me to another room where I met the nurse who was doing the endoscopy so I'd say I had it done at around half 3 even though my appointment was was 13.50. Then back to the bay and another nurse came and gave me the report and it seemed like minutes later when she told me she'd rung my partner to pick me up. She never mentioned reflux but I suppose that would be in my stomach maybe which they didn't see. She said she couldn't see any blockages or narrowing just that hernia. She also said there was nothing to suggest why I should have problems with swallowing but on the phone yesterday she was saying about all these different tests to find out what's going on. She did say about how anxiety could be a cause too. The only medications she's mentioned is anxiety medication... I'm absolutely crap with anything like this (medical stuff) and tend to fall to pieces and can't think about much else. I'm not brave at all where tests are concerned.

I was going to say I wish someone would scrub my brain in the last message. Just to get rid of these fears. It seems like we feel very much the same.

The incident with the sweet is enough to cause this swallowing issue especially if your anxiety was high already. It's the same as if we panic somewhere and then avoid that place. This problem of ours is hard to avoid though isn't it. X

[SarahNM76]

God knows why but I've just bought a 3 minute egg timer from Amazon, like the ones with the sand in. My idea is that I can use it when I eat and practice being able to swallow before the sand runs out...Am I going mad?! X

[SarahNM76]

I feel like the only books I read or listen to are anxiety ones. It really can take over our lives can't it. I think maybe we're just always looking for ways and answers to how we can get better but are we going about it all the wrong way? Non anxious people have aches, pains, sensations, thoughts and things going down the wiring way when they eat/drink but they seem to just dismiss it or carry on as normal. We have to overanalyse and research everything which probably just keeps it going doesn't it. We definitely are stuck in a rut that's for sure.

It's horrible when you have a good day and think you're turning a corner but then it seems to come back and slap you in the face. Don't let today get you down too much. I know it's hard and frustrating and deflating but somethings got to get better soon surely.

Will it be the same doctor on Thursday who referred you for the endo? You sound so much like me because I went to the doctors a few days before crying and asking if I needed the endo. He even wrote on my notes that I was terrified of the endoscopy. He prescribed me sertraline but I wouldn't be able to swallow one.

Are you on your own for most of the day? My partner has been out since 7.30 this morning and isn't home yet. It's horrible being on your own with your thoughts all day especially when we have this swallowing thing going on too. I feel like I need looking after for a few weeks do you? X

[jojo2316]

Sigh. It’s horrible isn’t it. I am avoiding eating and i love eating. It sucks

[SarahNM76]

I could have written that. This phobia has got to be one of the most exhausting and baffling ones that there is. It's taking so much away from us isn't it and it's affecting our partners too. I want a social life and a relationship not to feel like I'm some kind of burden or a chore.
Its embarrassing and so frustrating sitting here chewing away 50 minutes after he's finished his meal which was 3 times the size of mine. I had a quarter of a gammon steak, 5 chips, some peas and an egg tonight...I ate the chips and peas and half of the egg which took me the hour that The Chase was on. I've cut a bit of the gammon off and have been chewing it for 5 frigging minutes. I had a banging headache when I sent the last message to you. I'm sure I must be dehydrated but all I can do is sip ffs...Wtf is this phobia!!! 😡

It's in my head all the time too Rox 😔 I'll get a drink or some food and go and sit in the living room and put my programs on - Trying to be 'normal' but it's like an act where I'm pretending not to think about it but I know I am... If that makes sense. Then it's just a struggle and I don't enjoy anything.
Like you, I've struggled with this anxiety shit for years and it's about time we got a break from it isnt it.

Did you worry as a child? I sound like a bloody therapist now 🙄 I was a worrier. I was very inquisitive and knew too much about different things. I'd say I was quite clingy towards my parents. I remember I used to say I had tummy ache a lot but I think it was anxiety butterflies. I absolutely hated that Sunday night feeling before school. I used to love visiting my grandparents and other family members because I think it made me feel safe and cosy and looked after. I think I'm still that little girl now who wants to feel safe, cosy and looked after 😔 xx