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#brittleasthma

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Då var det dags igen ❤️ Lilla skruttan, kör på med aiolos och andra mediciner så hoppas vi kunna kicka runt dettta 👊🏼 #astma #asthma #brittleasthma

I'm part of a promotional video for an alternative therapy I do to help with my asthma called salt therapy. We are filming today 😊 #saltcaves #salttherapy #alternativetherapy #asthma #brittleasthma

Broken back from oral steroids #prednisolone is NO excuse to miss treatments - so #doyourtreatmentsdamnit 👍👍 #TeamFreyLife #BrittleAsthma #6WeekHospitaladmission @freyliving @peterfreylife @scotty111r Blog link in bio!...

Got extra spoons today. Need them too. #aminophylline #brittleasthma #hospital

MacBook, Christmas tree & Paul Simon on Spotify. Pretty good way to work when feeling proper poorly but have customers waiting! #mecfs #fnd #brittleasthma

Bloody hate my lungs!!! Thank goodness for a fan and home nebs #bronchiectasis #brittleasthma #fedup #asthmasucks

Bubbly from the bottle?! Celebrating the end of a year that did its best to kill me. #sepsis, #brittleasthma, and numerous bouts of #pneumonia ain't got shit on me!

Still here. Bila boleh balik ni... #brittleasthma

Cause I REALLY suck at breathing. #asthma #brittleAsthma #Wheezy

MOST RECENT

I realised that I started the #christmasspooniechallenge kinda late and missed a few days so I'm making it up now! Day one... Your diagnosises. **
I suffer from what started off as very brittle asthma, but an infective phenotype, meaning my lungs were very prone to infection which in its turn caused asthma symptoms. My lungs also produce lots of thick sticky mucus which gets trapped in my already tight airways and breeds infection, damaging patches of the lungs as it goes. As a result of this I have to use nebulisers, oxygen and an non invasive ventilator. I also have to have frequent courses of IV antibiotics and so I have a port for those.
**
My lungs have been treated with lots of steroids, which are a necessary evil! As a result of this I now have a condition called Corticosteroid Induced myopathy causing lots of pain and weakness, so I have to use a wheelchair. I also have secondary diabetes and I am insulin dependant. My Adrenal glands have been very suppressed and so I am Adrenal insufficient. I also have Cushings Syndrome.
**
Other illnesses I have are problems with acid reflux, anaemia, depression, nausea/vomiting and Osteoporosis

#spoonie #lungdisease #lungssuckatbeinglungs #chronicillness #disabilities #brittleasthma #asthma #ivantibiotics #oxygen #noninvasiveventilator #steroids #diabetes #diagnosis

Feeling bit sorry for myself #brittleasthma #hospitaladdmissions

MacBook, Christmas tree & Paul Simon on Spotify. Pretty good way to work when feeling proper poorly but have customers waiting! #mecfs #fnd #brittleasthma

When you’ve not slept in days.... when every part of you hurts.... when you want to curl up and just cry..... someone brings you #glutenfree #wheatfree and #dairyfree crumpets with #honey and my #bucketofcoffee now time to snuggle down and try and shake this meh and get up and go out #chronicillness sucks arse this time of year and #chronicpainsucks as soon as the morphine starts kicking in life can begin. For now though. I shall life in my pit snuggled and hoping maybe for a little sleep 😴 #spoonielife #spoonieprobs #brittleasthma #lowoxygen #chronicpain

As usual, my beloved balletcats have been providing plenty of #snuggles while I have #lurgy. I can rely on Nijinsky to check if I have a #fever (he has a new meow that has Balanchine bring me paracetamol [he's grasped it's got limitations on it though: #clevercat]) as well as all their other zebra-care tricks. Protecting my joints & working on their sentient!heatpads routine has been particularly welcome this Lurgy round, even though I'm #sleeping so much even the #cats are impressed with my #napping skills...
#ehlersdanlossyndrome #ehlersdanlos #sinusinfection #sinusitis #throatinfection #laryngitis #pharyngitis #tonsillitis #asthma #brittleasthma #immunesystem #duvetday #gingercat #sleepingcat #cuddlingcat #cattail #catsofinstagram #instagramcats #catstagram #catsofig #catdoctor #ilovemycat #mycatlovesme

On Saturday, for the first time since September, I did something that wasn't for Brownies & wasn't a medical appointment.
The #catdoctor turned out to be almost alarmingly #prescient though: I pretty much slept Saturday night > Wednesday morning (I fed the #cats twice a day, took my #medication twice a day, drank in vague patches of awakened, & ate once a day [yes, #oops]) & have been doing some serious #napping since. I try not to think about the hows&whys of a #sinusinfection no longer meaning a blocked nose - unexpected bonus of the #njtube year, certainly, but... ick... Sadly #sinusitis hasn't stopped being v painful; & with the accompanying #throatinfection I've been, er, enjoying, the creation of my own tropical microclimate. I've always run a #fever easily (despite a low body temperature when I'm what passes for well) & still haven't grown out of having #hallucinations 🤒 desperately hoping to avoid yet another course of #antibiotics: I have my trusty #coamoxiclav here at home, of course, but if I can keep the #lurgy from my #lungs then (unless a #GP [or worse, #accidentandemergency doctor, would REALLY prefer to avoid any unplanned #hospital trips...] says I've to take them) I shall Cope. (Which yes, does involve ignoring all the guidance which is extremely clear about the fact I should have been referred to an #earnosethroat specialist. I feel I have quite enough medics to chase about things without adding #ent to the list. And yes, that is a totally sensible & responsible approach. Uh-huh.
Anyway, what was it that broke me completely? An 11th birthday treat. I got to see "Paddington 2"; I visited an ice-cream parlour (where I had a fruit smoothie); I was fed a superyummy tea of noodles & vegetables; I had a #feline #fashionshow produced in my honour; I named one of the stars thereof as a name was proving elusive & it was VITAL that cuddly twin best-friend cats had Perfect Names (#nopressure); I'd some v serious & in-depth discussions about "My Little Pony"; & provided plenty of hugs. Plus I got to hang out with the birthday girl's parents, who're both fab (her mummy is my actual friend though!)
#ehlersdanlossyndrome #ehlersdanlos #asthma #brittleasthma

Proof of quiet neb! Thanks to my anonymous donor! You've changed my life!! #spoonielife #spoonie #brittleasthma #chronicillness #oxygenuser #omronpocketnebuluser

The joy of #brittleasthma Stuck in bed because my lungs don’t like me moving much. It hurts to breathe. I cough constantly...and that hurts, too. I wheeze like a mini Darth Vader. The tightness in the chest and back is painful and frustrating because I cannot take a deep breath. Walking is frightening...I start to walk and I feel like a dementor is sucking the air out of my lungs and I’m struggling to breathe. I get headaches from the coughing and tension. Just showering can be difficult because of how hard it is to breathe. I try to hide all of this from people...I am not sure why. I just do. I hear people say all the time, “It’s just asthma.” People die from asthma every day. Please stop saying that. I also have people say, “You were fine yesterday. What changed?” My answer, “The hell if I know. It’s the nature of the illness.” It comes on suddenly (for me). Usually without notice. And it knocks me the fork down...for a bit. Yes, #brittleasthmasucks but #mylifeisamazing

Give boxing a go today 👊🏻 was brilliant getting back to the gym feel great after it #fitfam #ukfitfam #irishfitfam #training #asthma #asthmauk #asthmalife #brittleasthma

Those that know me.... know how I hate packing.... ugh! Time to pack for #Madrid next week. Which means you’re about to see how a girl should pack.... one week one small case.... clothes ✅ medications ✅ which means last minute addition of my makeup and a couple of bits of toiletries and we are good to go .... might even have space for my gym gear 🙏🏻#worktrip #packing #suitcase #medication #girlpacking #brittleasthma #packingmedicine #underwear #corporate #corporatetravel #timetopack

Today the doctor I saw congratulated me on surviving yet another hospital admission since he saw me and surviving intensive care....I will not let me asthma beat me brittle asthma is a rare form of severe asthma, that the clinicians may recognize and treat very strictly, because of high morbidity and mortality. Most ego go in intensive care don't return #brittleasthma #asthma #asthmasucks #asthmasucks #asthmaticmum #survivor

The view from my “emergency sofa” in my studio! Working is difficult today. But don’t worry Karen @purpleseagull.co.uk still hard at work 😉

Two years ago, when I was still in the grip of steroids with a swollen face, insane curly hair and random bruises.
#sideeffects #steroidssuck #prednisolone #brittleasthma

When you’re just done.... when breathing hurts again and you want to just 💤 💤 💤 💤 .... can I please have some new lungs? #brittleasthmasucks #brittleasthma #asthma #nebuliser #asthmalife #spoonielife #chronicillness #batman #bluehair #looklikeshit

Excuse the messy hair. I am not happy. I've been feeling a bit crap lately and was having to come up to bed more. Thought it was just side effects and all that. SATS haven't been brilliant so been on the oxygen. Turns out my concentrator downstairs was broken after the service. He didn't tell us and spoke to emergency line and they're sending someone out. Of course that means stuck in bed until then as my cylinders are not all full. Not happy!

#oxygenuser #brittleasthma #chronicillness #spoonie

Slightly early for Christmas pics but doing a bit of colouring whilst recovering from my latest asthma attack

It’s 6am and I think my fever has finally sorted its act out #thankfuck from hitting a high yesterday of 39.9 and feeling like I was about to die (that’s when I made any sense) to being back to 38.2 ok ok so that is on paracetamol but I’m gonna take it as a win. I’ve been in bed 48 hours now and well I think if I can stand long enough I am going to try and shower (might need help there). The chest infection is still taking hold and although I’m not as audible on the wheeze... I’m presenting partial silent chest so I need to go for an X-ray to see if there is flooding. As much as I am trying to stay out of a hospital bed and at the moment with the consent of the amazing teams of my hospital #hillingdonhospital and my local GP and community teams. It is looking like I need to go in. I’ve had a few moments of hypoxia recently and oxygen sats are getting worse at 92/93. However they are also aware that at home I rest more and tend to behave more 😂😂 I need to thank my fellow #spoonies for being in constant touch and making sure they have everything on lock down. Including needing to call an ambulance 😏 we all know our limits and though I tend to take more risks .... I don’t know who keeps saying I’m stubborn 😌.... I do listen especially to that merry bunch. Sometimes it’s not about the battles we fight it’s about the army behind us and hell yeah i have one of the most elite ones around #luckygurl #luckygirl #sicknote #sick #bedrest #brittleasthma #asthma #chestinfection #timetorest #tattoosleeve #girlswithink

He's always tired. Some of his symptoms are not there. His hand tremor, probably due to too much Salbutamol #asthma #brittleasthma #brittleasthmatype2 #brittleasthmatic

So we all got sick in the London Office 😡 and with recent events I had been working from 🏡 a little chesty. Today My temperature sky rocketed to 39.7 🤒 I’m coughing up green gunk 🤢 throwing up 🤢 oxygens are dropping 🤐 I’m dizzy 😵 photosensitive 😎 and have a pounding headache 🤕 means one thing time for some more Antibiotics and bedrest to try and beat being admitted to the ward. #lifeofaspoonie #alcatrazpsychoward #bluehair #sunglasses #chestinfection #temperature #sicknote #sleeprestrecover #chestinfectionssuck #asthmatic #brittleasthma

Saturday night when you have a chest infection #socks #brittleasthma #brittleasthmasucks

TFW you've had a shit day and got no one to blame but yourself and your body hates you on top. Coz it can just join the back of the queue

#spoonie #selfie #badday #brittleasthma #chronicillness #fibromyalgia #flare #chronicpain

Doe a deer a female deeeerrrrr..... no seriously as I sit at home, fresh from the shower 🚿 (hence the #braids) exhausted from a night in #resus I am thankful again for not only having an amazing hospital team #nurses #doctors and #consultants that know me inside out now (literally) who work with you and not against you. Who not only understand how #brittleasthma is different to #asthma but how we all have limits and those with #chronicillnesses tend to know when to tap out or keep fighting. Along with that I have an amazing support network with my #friends always there. Never once have I been alone, even if some can’t physically get there. We support each other always. For my fellow #spoonies who get the other sides, who aren’t afraid to give a reality check when needed #sometimesyougottalisten and mostly to man who was at work when I text him I was going to get some #antibiotics and then 30 mins later when the hospital called him to tell him I was now in resus who despite what happened in #London yesterday and the fears of the unknown kept me going whilst working ensuring London was safe. I am truly blessed. I have so many people fighting for me and giving me support I am truly the luckiest girl alive #luckygirl #blessed #loved

*GRAPHIC PHOTOS*
I wanted to share the dangers of injections and infusions at home. I was always blaze and thought nothing happened to me and within a week of a tiny red sore area i was being rushed to emergency theatre for abscesses to literally be cut out of both legs. I started antibiotics on day 1. Day 2added a 2nd antibiotic. By day 4 changed antibiotics as it was still growing in redness and soreness. Then on the last day the blisters came up on my legs. I went to the toilet and it started oozing a little puss. I went to out of hours at 2am who arranged me an emergency surgical bed. A few days of iv antibiotics and then 2 weeks of strong antibiotics. When i woke up one of my abscesses was so deep the nurses couldnt pull the packing out as there was so much i nearly had to go back to theatre for it changing. Ive been at home for 2 weeks with 2 open wounds that every day or other day packing has to be pulled out of the holes, new packing put in and new dressings. Its really painful as it has also flared up an old conditon called meralgia parasthetica. So please if you inject or infuse at home and you get red or sore. Draw around it and contact your dr asap. This has been a horrendous scary journey for me. #subcut #abscesses #infection #gastroparesis #spoonie #brittleasthma #syringedriver #antibiotics #surgery #emergency #pain #celulitis

Ok. It’s no secret that I am #exhausted but as I too afraid to open the curtains and see how grey and miserable out there. So before I head off to Maidenhead I need to check myself. It doesn’t matter how #greyandhorrible it is out there. I am one of the luckiest girls alive. Even with my #brokenlungs I get to live a life most people can only dream of. I have way to many amazing things and people in my life to focus on the negative. So nearing the end of the most surreal week going I smile and know I have an epic weekend planned (#brittleasthma you best behave) so as I snap a #selfie check my #babypinkhair and ensure my make up is flawless before jumping in the car to the office I make sure I also remember how truly lucky I am #livingthedream #lovelife #selfiemania #corporate #corporateselfie #commute #luckygirl #loveyou

Looking good! Hope it keeps…
Getting ready for the next part! Back on form after the broken shoulderblade and asthma attack.
The nalu bead journey will be shown soon… #theoddysee #magicseaweed #surftheworld #asthmauk #brittleasthma #brittleasthmasurfer #fightbackfromasthma #asthmawontwin #westwardhosurf #croydesurf #putsbroughbeach #sauntonsands #stillfightingback #asthmatic #fightasthma #dosomethingawesome #yogisurfer #soulsurfer #nalubeads

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