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Confessions of a severe asthmatic

It’s holiday season and here is a time and place to admit our sins... so here goes my most recent -

Last night my PF dropped to 30%, but I did nothing but treat with ventolin 🤫🤫🤫

Anyone else have any confessions? Let it off your chest to get on Santa’s nice list! 🎅🏻🤶🏻🎄🎁

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It might sound really ungrateful but when people who don’t have asthma tell me they know how I’m feeling because they once had a really bad chest infection or blah blah blah! I smile sweetly and think, ‘you literally have no idea!’ Also if Santa could bring me a new windpipe and some ribs that don’t feel like they’ve been hit by a large heavy vehicle for Christmas, that would be ace! 😂

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...or the people who have very mild, ‘I have a blue pump which I never use’ asthma, who say ‘well I have asthma and I can... so why can’t you’...

I’ll put a word in with the big man for your ribs and windpipe 😉

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Yeah, they irritate me! 😂 mainly because I’m jealous!

😂 thank you! Oh what a joy it would be to have a ‘normal’ windpipe!

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Had variation on that from colleague 'Your lungs are just the same as anyone else's you know.' Ok shall we swap?

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🙄 and it’s at this point I google images of an asthmatic windpipe and show them to people! 😂

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Love this post but hope Santa is not any kind of resp professional lol. Though if he is, maybe the registrar in my clinic will get that FENO machine she said she wanted for Xmas :p

My confession: I can always find an excuse not to contact the asthma team despite being told a million times that I should be doing it more. And even with FEV1s in the 30%s.

Also, I don't clean my spacers enough. And I have frequent uncharitable thoughts about certain members of the healthcare professions.

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You and me both! Ostriches living in Egypt is what we are 😂!

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Yeah, I’m rubbish at cleaning my spacers! I broke the valve in one cleaning it when I was younger and that is now my excuse to avoid it! 😂 I should probably also wash the little bag I had made to keep it in.

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Emmaaaa! 😜

Equally I can’t judge haha, went to get my obs checked on the ward today as it was quiet and I was struggling. Sats of 89% and a heart rate of 140, “eh I think I might head home to bed for a rest” 😂

I also don’t clean my spacer enough...I was so proud of myself for cleaning it yesterday (but I actually can’t remember when I did before that! 😅)

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I know, I know! To be fair I was moving in to my new flat, and the boiler didn’t start working til 3AM 🙄. Exercise plus cold plus stress plus dust plus underlying asthma to start with... not a great combination! Sats only dropped to 93 tho so I win on that front! My HR wasn’t too bad either 😇

I think we’re all guilty of not cleaning our spacers often enough - good star for you there! 🌟

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Hope the move went well other than lungs getting involved!

Last time I had an admission I knew at least a few hours before but meh I had a work education session I wanted to go to. I decided I wouldn't talk but I couldn't resist tryinf despite sounding weird. Colleagues decided to put foot down after lunch.

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Yes thanks. I now have a partially furnished 2 bed flat ☺️. All my furniture was found yesterday at a 2nd hand store, so literally moved in not knowing where I would sleep yesterday, but got a bed and (new) mattress delivery by 4 so it was all good 💁‍♀️. Slowly starting to look lived in, got more things to bring up from my parents house and more furniture to buy when I can but I can officially say I’ve flown the nest 😊

I usually have a few days warning in the build up to admission then I go to hospital at a convenient time... after work, when I can get a lift/public transport etc 😅. It drives doctors spare, but I know if I go in ‘to early’ I don’t get the treatment I need so...

You can’t hide from the truth Lysistrata (or your colleagues apparently 😂)!

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Lol I am usually like this and wait, for similar reasons, but the last 2 times got me suddenly at work!

Yay for new flat and furniture :) exciting times. Now just tell lungs to behave for tomorrow and job...

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I’m kinda jealous in a weird way of your SATS that drop! 😂 mine are always 100% when I’m having an attack, trust me to be awkward!

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It’s only this year they’ve actually started to drop as things have gotten more out of control. Before that they were always totally fine and I would have (very slow) arguments to get treatment 😂

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Same here! Over sheets of paper or via sign language (I do hold back 😂) as I can’t talk when I wheeze, in fact it’s the only time I’m quiet!

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Ahaaaa yep 😂 my housemates always used to get in trouble for using their Med student IDs to sneak around and find out what was happening and then moan about the lack of active treatment

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I admit to feeling very lucky cause I wheeze, my sats drop and my PF drops! I’m as typical as you can get for an asthmatic... I’m just difficult in other ways 😉

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A mythical textbook asthmatic! You’re like the unicorn of the asthmatic world! 😂 I’m joking! My wheeze is usually mainly upper respiratory, my SATS have only ever dropped once to 70% when I had a bad allergic reaction and my peak flow only ever drops in an attack, rest of the time the damn thing is perfect, even with a cold or chest infection! It would be so much easier to treat if it wasn’t so awkward!

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Same, wouod make life easier in some ways!

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Normal is boring apparently, still Id like to try it sometime

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If it helps, I still have to fight for my meds. I respond to well to a neb and my PF goes up by 50-100 each time then will plateau at about 450 (70%) after back to backs. Problem is it doesn’t hold for 4 hours, but then my obs are ‘too good’ to get hydrocortisone/mag bag until I let my lungs tantrum at the docs and decline back to 50% or lower. I swear if they just listened to me first off my time spent in a&e would be halved!

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Sometimes I delay taking good old blue until a more convenient time... I’d rather gasp and wheeze than stop what I’m doing 😳😅

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I do this a lot 😂

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Same! Cba to get off sofa...meh. oops everything dropped...

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Hahaha it’s like waking in the night and deciding if I can be bothered to get out of my warm bed if my inhaler isn’t within reach

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Or deciding just to use ventolin at night cause I CBA to get up to sort out a neb... plus then I can say I haven’t had any nebs so don’t need hospital 😅

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Hahaa 😂 I wish I could say I know that because then I’d at least have a neb at home 😜

One of my ventolins ran out overnight the other day but I decided I was too cold to get up and find another

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I’ve done that before... so long as I’m not gasping then I can ignore it!

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That was my thought exactly!

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I carried on typing at work yesterday and saved my work before I had mine! Bad girl! 😂

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Lol I always do that...some poor sod will have to otherwise. Thoigh forgot last.time and so decided to give colleague the password in resus lol.

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I text my mum from the ambulance to let her know I’m going in again!

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Sometimes I don’t let my mum know I’m in a&e until I’m admitted or way after the event... there’s no point stressing her out and there’s nothing she can do at the time so why worry her? Even last night, when she was in the room next door I didn’t tell her how bad I was 🤐

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I basically let her know so someone can pick me up 😂

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I never tell my family. Or anyone else who doesn't need to know...

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I just like to be picked up and have tea and sympathy off my mum ( literally the only time she sprinkles that sympathy at me)

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Sympathy from mum is great 😂 I ring mine to get support for my mopey takeouts

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I don’t care how old I am, when my asthma’s bad, I want my mum 😂

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I’ve just noticed from reading these that we’re all human, is that allowed when you’re an asthmatic?! 😂 asking for a friend 😂

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I dunno, I think I may be an alien based on my airways! Lol

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🤣🤣🤣 I’ll join you then!

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I know I’m meant to be trying to lose weight now my steroids are down a bit (although I have had to give in and put them to 40 at the moment) but I’m feeling mopey so I might drown my sorrows in Chinese takeaway - that’s acceptable right? 😂

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It’s Christmas!

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Definitely! Crap-day take-aways are tots allowed! Take it from someone who ‘celebrates’ discharge usually with a greasy take out!

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I like to celebrate discharge with one too 😂 at my last appointment they thought I might be starting to develop heart problems as it looked a bit enlarged on x rays (and joy of joys there is an unknown genetic heart problem in my family! 🙄) but the heart failure blood test came back fine so I celebrated with greasy take out - definitely great for my heart’s future 😜

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It’s bad but I laughed out loud at your last sentence ... nothing like a bit of self care 🤣

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I crave rubbish food after an attack, my personal trainer is going to kill me when I confess all I’ve eaten while I’ve been bad but then asthma attacks must burn a serious amount of calories and put your body through a hell of a lot.

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I work on the principle that pred makes you low in sodium which is why we crave crappy food when we’re ill cause of its salt contents... don’t know if it’s true or not but it makes me feel better about it!

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Makes sense, I always try to eat bananas to get my potassium levels up and get rid of the aches in my legs I get from the nebs.

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(Fresh) Orange juice (not from conc) has more potassium in it than bananas, if like me you can’t stand the fruit! A consultant let me in on that little secret 😂

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I’ll try that! I’ll send my boyfriend out later with very specific instructions! 🙄

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Good luck with that 😂

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You have no idea of the struggle 🙄 the man can’t follow a shopping list! This is why I have to get better or the house doesn’t function 🙉🙊🙈

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I didn’t know that about orange juice. Yay does this mean i can stop eating bananas 🎉 🎊 I don’t know if you mean you don’t like oranges or bananas but I don’t care much for either, though I do love orange juice (is that odd?)

Wishing you all the best in your new apartment and job 👍

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if you don't like fruit what about vegetables do you eat them

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Yes I like vegetables and eat lots of them, I’m not keen on carrots but that’s the only one I don’t like, and strangely I was reading the other day it’s classed as a fruit?! I like the summer fruits, melons, figs, strawberries, cherries, that kind of thing.

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its very good for you to eat as much fruit and vegetables as you can .have you got a juicer you can juice your fruit say an apple 🍎 orange 🍊 pear some grapes strawberry's you can drink this very easily guess what you have done you're had your 5 aday

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I haven't got a juicer or a food processor. That's a good idea about making juice. I do eat lots of veg but not much fruit, especially at this time of year. Thanks for the thought 👍

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your very welcome please keep healthy

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Hi,

My teeth started hurting after a particularly bad attack that lasted weeks and I had to have a lot of the ventolin through the nebuliser. The tips of my fingers also started paining during the nebuliser. I almost didn't want to take the nebuliser as with my chest tight and feeling yuk with the flu/chest infection, I just didn't feel like adding pain in my teeth and sore fingers to the mix. However breathing trumps everything else! I got no reaction when I asked my specialist why this would happen. I think he thought it didn't happen as it didn't fit into his knowledge bank.

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That’s a new one, I’ve not experienced that but the nebs must affect our bodies in so many different ways. They make the inside of my nose feel sore sometimes and like there’s a funny smell in my nose. Medical professionals do that a lot! I had one tell me once that the blood gas test they do doesn’t hurt! Really mate? Give me your wrist then and I’ll put a needle in it, see how you feel!

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My latest is nose bleeds! In the past I’d get bloody snot after a lot of nebs (8+ in a&e or 4+ everyday day for 3+ days) but since 2 weeks ago I’ve had ‘proper’ dripping nosebleeds once a day everyday (different times/activities etc) I had had 4-6 nebs (can’t remember 😅) and no other treatment. Still getting them now 🙄 - guessing I have an enlarged blood vessel or something and the neb weakened it 😒. Medics just check my BP and send me on my way🙄. Haven’t had the sore teeth and hand think yet tho 😬.

Yeah most docs don’t like anything that doesn’t fit in the box! However RD23 unbelievably ABGs CAN be pain free if done correctly and well! I have even experienced it!!! (No longer at the hosp with the master tho 😩)

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Ouch, have you seen your GP about it or is there nothing they can do?

How was it done pain free? I always cry and I’m funny about stuff going in/around my wrists, it makes me feel sick and faint.

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In the process of moving atm. When I go back home I’ll have to register at a new GP (currently at parents for Christmas and I’m registered there). After I’m registered I’ll see about getting it cauterised or something 🙄

If they get the artery on the stab then it doesn’t hurt til afterwards when it’s bruising (minus the normal needle ouchie). The master used to take 5 mins focusing on where my artery actually was, how deep he thought it would be (my arm blood vessels are usually deeper than textbook 🙄) and timed it with my heart beat I think. My last ABG really hurt it literally took 10 mins first one wrist then the other, swinging all over the place... doc didn’t realise they were deep 🤕. He was so confused bless him as he had fingers either side of the needle on tn the pulse but couldn’t get the artery 😂.

I’m fine once the needle (any needle) is in... I can’t cope with the anticipation anymore (as I child I always watched it all 😅).

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Hi,

I have psoriatic arthritis - not from any medication - but I think that the ventolin may have affected my system and the ends of my fingers may have been a weak point that became affected. I have no real idea but that is the best I can come up with at present. I just know that it happened and that the excessive ventolin became a trigger. The pain wouldn't last long - just basically during the nebulising time. I don't expect the doctors to know why (although it would be good if they could use their knowledge base to do a bit of problem solving). I would like them to actively listen to information given, acknowledge it and think about it - but I have given up even contemplating that this is in the remotest bit likely. They have a way of not acknowledging what doesn't fit into their framework. I just deal with what happens. Luckily it has been a while since I needed the nebuliser.

Now that my rant is over, I will look forward to seeing in the New Year. Wishing everyone a great, happy and healthy 2019!

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Sorry to hear about the finger pain. I know exactly what you mean about 'it's not something I know about so will ignore it'. I would prefer them to just say oh I haven't heard of that before but it doesn't mean it couldn't happen. I have met the odd dr who will do that but too often it is more 'I've not heard of that so I'm going to dismiss it/suggest you are a hypochondriac for mentioning it'. It does become a bit circular!

I just like an acknowledgement even if there is no answer, but too often get a complete BS answer which I find disrespectful when it's done with the clear intention of 'just shut the patient up, they'll swallow anything even if it makes no sense'. I do appreciate they are busy and maybe used to people wanting answers which they cannot necessarily give especially in an acute situation. However, there needs to be a better way to deal with it than inventing explanations with no scientific basis whatsoever - maybe training needs to cover this situation better rather than teaching them they must have an answer at all costs.

The one I get most is 'oh it's not asthma [because it doesn't fit into my narrow view of what asthma is, which is basically a wheeze]. I'm not saying you don't have asthma [I would if I could but since you have told me you attend a specialist centre for severe asthma that's a bit too far] but this isn't it [despite you presenting the same way as you have told me you always do and having 99 things which are asthma like but they're not ones I know about]. It's probably just a virus [which has somehow not in any way caused any asthma at all despite the fact that this is a trigger for about 90% of asthmatics and you are short of breath].

Now I'm ranting - hope you and everyone have a good 2019 and no need for nebs for a while.

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Hi Lysistrata,

I had a laugh at your rant - so with you! Thank you and all the best for 2019!

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So that would be why I’m craving crisps?

And gone of chocolate

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My spacers are an actual disgrace, it’s a miracle I’m not colonising something in my lungs lmao

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🤣

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You have made me smile 😃 we all have confessions like that but we are not naughty!! We just want to breathe don't we. I would like new lungs but that's a lot to ask so I will have a Christmas day where I can complete the cooking without help, last year was awful, a chest infection that lasted well into new year thought it was going to be hospital. I wish you all a very happy wheeze and cough free Christmas and a very healthy new year hope Santa is good to us all.😊

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Good luck and hope you have a better Xmas this year!

The asthma psychologist at my clinic has asked me to write down how an ideal appt would go (as I have a lot of specific anxiety round appts due to bad experiences - she understands about the bad experiences). To me this feels like asking Santa for a pony, a mansion, world peace etc lol.

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😂 a pony would set me off!

An ideal appointment 🤔 one where they answer all your questions?

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Lol I would not know what to do with a pony in reality! Would rather have a cat.

Ideal appt - I wrote myself a whole list which the psychologist asked if she could share with the team! Would be them treating me with respect ie as an adult not a panicking child, listening properly, acknowledging I might have insight into my asthma due to actually living with it 24/7 and NOT trying to constantly reassure and explain everything away. Also to have a productive discussion which goes beyond 'are you taking your preventer?' And feel like they might support me when the medics are useless and try to chuck me out when I still need nebs. Also to stop focusing quite so much on whether I have eosinophils and maybe look into whether there are any options that don't focus on that type of.asthma, since I seem not to have it - or not as the predominant issue. It always seems to be made into pred or no pred, and if it's not pred responsive then nothing happens.unless it becomes admission level.

This team has been much better on the whole than previous clinics and I will say does generally treat me like an adult with a brain. However there is still one nurse in particular who is nice but always seems to waste time asking about stuff that is in my notes.(ffs you do not need to ask if I just have a brown, it is in the notes and no one in this clinic is that level anyway) , constantly thinks I need reassurance I am not dying instead of actually just wanting to feel better/get some solutions, and overall often seems to treat me like I'm seeing a GP nurse for the first time. She always says how good it is that I have no.wheeze and eosinophils are normal, despite me telling her every time ans it being clearly documented that I often have both those things in an attack and it means very little in my case so can't be seen as a good sign. She also tried to tell me.my asthma cough was just a cold once when admitted - that is the kind of detail where I need them to LISTEN TO.ME as I know the difference! I Also am.thr only person who has been there for all my attacks so I am.aware of patterns.

Oops sorry for a bit of a rant/ramble!

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That was a big laugh out loud. You could get the pony and the mansion of you win the lottery I will buy you both if I win. World peace is a mammoth task like asking for all our asthma and chest problems to disappear. We can hope though. Humour is the best medicine sometimes keep it up. Still laughing😂

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'Harsher penalties for parole violators, Stan...And world peace!' Where is my Miss Asthma UK sash? ;)

Sometimes seems easier than getting anywhere in clinic appts lol.

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More lol you are my kind of person have enjoyed your banter a breathe if fresh air excuse the pun!!!!😀

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That’s made me feel funny just reading it 😂🤮 I don’t know how you can watch! I think last time I pretended to be brave as I could see my boyfriend looking like he was about to pass out!

Hopefully it gets better soon. How was the move?

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😂

Move was ok. Lungs protested but think they’ll be happier there than at my parents in the long run (I’m now on the Norfolk coast compared to a small villiage in south west Essex surrounded my fields and roads 🙄). Now I need to furnish the place a bit more and bring more stuff back with me to technically still moving 😒. Hoping my lungs have gotten over that paddy!

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Hopefully the location will make a difference. I had great fun furnishing my first flat, my mum up-cycled a lot of things for me and it’s nice to have a place that’s exactly how you want it. Enjoy!

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