@JustMissEmma

PR guru, to PJ warrior...horizontal in an odd world. Battling multiple conditions with humour, and writing books along the way #Marmalade #ATaleToldInSeasons

 Liverpool
Joined August 2011
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1/18 Today is the beginning of #Dysautonomia awareness month, so I guess now would be a good time to explain why I live in a horizontal world... please don’t scroll past...have a little read
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People with adrenal insufficiency face a complex process of 12+ steps to prepare an injection, often in pain, vomiting & experiencing brain fog. 1 in 200 adrenal crises are fatal. Patients' lives are at risk, & hospital admissions increase because of delayed treatment. (2/3)
Graphic from the Addison’s Disease Self-Help Group (ADSHG) with the heading “Current hydrocortisone injection process” in bold white text on a red background. At the top right is a white button labelled “Campaigning for Safer Adrenal Crisis Care.” The graphic describes four challenges with the current hydrocortisone injection process, with a white icon accompanying each section. “Complex & Lengthy” explains that preparation involves 12+ steps, requiring good vision, a steady hand, focus and manual dexterity. “Challenging” states that self-injection is extremely difficult (or impossible) during a life-threatening adrenal crisis, when experiencing pain, vomiting, diarrhoea, brain fog, dizziness and loss of consciousness. “Low Success Rate” states that, in a recent UK study, only 18% of patients were able to self-inject. “Increased Hospital Admissions” states that, in the same study, admission to hospital was 34% higher when the injection was delayed and given by a paramedic or in A

ALT Graphic from the Addison’s Disease Self-Help Group (ADSHG) with the heading “Current hydrocortisone injection process” in bold white text on a red background. At the top right is a white button labelled “Campaigning for Safer Adrenal Crisis Care.” The graphic describes four challenges with the current hydrocortisone injection process, with a white icon accompanying each section. “Complex & Lengthy” explains that preparation involves 12+ steps, requiring good vision, a steady hand, focus and manual dexterity. “Challenging” states that self-injection is extremely difficult (or impossible) during a life-threatening adrenal crisis, when experiencing pain, vomiting, diarrhoea, brain fog, dizziness and loss of consciousness. “Low Success Rate” states that, in a recent UK study, only 18% of patients were able to self-inject. “Increased Hospital Admissions” states that, in the same study, admission to hospital was 34% higher when the injection was delayed and given by a paramedic or in A

Graphic from the Addison’s Disease Self-Help Group (ADSHG) with the heading “An improved injection process will…” in bold white text on a teal background. At the top right is a white button labelled “Campaigning for Safer Adrenal Crisis Care.” The graphic describes four improvements to the hydrocortisone injection process, with a white icon accompanying each section. “Be Simplified” explains that the process will require fewer preparation steps and will be easier to use for people with poor sight or hand movements. “Be Designed for Ease” describes treatment that is pre-measured and ready to inject, with Act-O-Vial® identified as the short-term option and a pre-filled syringe or auto-injector as the long-term option. “Be More Successful” highlights an increased chance of timely self-injection to treat adrenal crisis. “Give Better Health Outcomes” states that timely treatment will reduce the risk of hospital admissions. A large circular icon on the left shows a pre-filled injectio

ALT Graphic from the Addison’s Disease Self-Help Group (ADSHG) with the heading “An improved injection process will…” in bold white text on a teal background. At the top right is a white button labelled “Campaigning for Safer Adrenal Crisis Care.” The graphic describes four improvements to the hydrocortisone injection process, with a white icon accompanying each section. “Be Simplified” explains that the process will require fewer preparation steps and will be easier to use for people with poor sight or hand movements. “Be Designed for Ease” describes treatment that is pre-measured and ready to inject, with Act-O-Vial® identified as the short-term option and a pre-filled syringe or auto-injector as the long-term option. “Be More Successful” highlights an increased chance of timely self-injection to treat adrenal crisis. “Give Better Health Outcomes” states that timely treatment will reduce the risk of hospital admissions. A large circular icon on the left shows a pre-filled injectio

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Misogynistic right winger afraid to show his own face or name, giving advice on why a puppy was being a puppy… *rolls eyes so far back, goes temporarily blind
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Today, this little twat has: Beheaded all my remaining flowers in the garden, Eaten her sister’s cat sick, Chewed a whole in the bathroom door, busted my lip with her tiny floofy head…. AND barked repeatedly at nothingness. Offers welcome.
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Winnie denies any overthinking on her behalf… #DramaQueen
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Well that teaches me to not text while Winifred (that’s her naughty name) is having a wee… Apparently, digging holes in mud is her new favourite activity Made up with herself 🤦‍♀️ #BathTime
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And just like that, ma wooly hats and beanie chaps are back. So long, warmly days… thou shall miss thee, immensely
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Me and Winnie got to lark lane today. Just there and back. No stopping. Just rolling… observing I’ve been too poorly to go out, and Winnie has been to tiny! BUT she’s bigger now… and I’m stronger for the moment… so… Operation ‘Socialise Winnie’ must begin! If you see us rolling along… come say hi… Winnie loves a little scruffle X
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I do not care how much… I WANT him. Look at his shoes FFS!! 😭🥰💛
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averabears.tedsby.com/279257… I’ve found him… His names Chester

Chester by AVera on Tedsby

Dear friends, I'd love to introduce you to my newest creation. This is Chester, and he turned out incredibly sweet and huggable. He has that special kind of calmness about him - the perfect gentleman...

averabears.tedsby.com
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THIS THIS THIS!! #Dysautonomia #PoTS #AutonomicDysreflexia
ThePOTSPostman
@ThePOTSPostmanOct 10
A doctor not knowing what’s wrong with a chronically ill patient isn’t the problem. The problem is when they can’t admit that, so they blame anxiety and send the patient home. Once that anxiety diagnosis is in someone's chart it becomes a whole new battle to get rid of it.
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Winnie would like you to see her first stick retrieval… She’s very proud.
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I’m rather glad nobody warned me just how utterly exhausting, stressful and downright chaotic having a puppy would be… because I might have thought twice Despite being permanently knackered (and mildly unhinged) I wouldn’t want a single day without her. ❤️🐾 #WinnieThePooch #MedicalAlertDogInTraining
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MORNING!
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This is urgent 🚨 escapes from garden onto train lines @networkrail @TLRailUK @BTP reference number in poster . #LinksRoad #Tootingstation #sos @JaneFallon @BrendaBlethyn @juliagarland73 @SAMPAuk_
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Can dogs eat custard?? Asking for a fwend… Thanks Winnie 🐾
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MORNING!
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Today marks the start of Dysautonomia Awareness Month. Aaaaand So… hello from me, currently somewhere between bed, wheelchair and no doubt another argument with gravity! I’ve been reflecting today about just how much has changed for me. For those who haven’t followed my journey, there were years when I couldn’t sit up for more than a minute without my autonomic nervous system failing… blood pressure falling through the floor, eyesight would disappear, everything would start shutting down and, and if I didn’t get horizontal quickly enough, the world would turn black. Years spent watching life from my bed… 9 to be precise. Horizontally sailing through my 40’s…. Then, very slowly, things began to change. After almost a decade of fact finding, and trialling medications like I was on payroll for Pfizer, my endocrinologist and myself managed to stabilise my blood pressure… and so began the looooong ongoing neurological physio rehabilitation. Persistence, stubbornness and what I can only assume is an absolutely unreasonable refusal to fuck off quietly… and somehow, little pieces of life started coming back. I get to sit in a wheelchair that allows me freedoms I only dreamt about for years. Simplest of things, like making my own brew, and enjoying a little trip to the shop for groceries are something I now regularly enjoy… I still spend most of the day partially bedbound, moving between my bed and wheelchair when my body allows. Planning trips around my need to be horizontal can be challenging, as I still can’t sit upright for long without my cardiovascular system throwing an absolute shit-fit because apparently the basic human activity of being vertical is simply too ambitious! But there’s still possibilities, options, hope. I see people. I go places, even if it is just the co-op. I put on my red lipstick even when my grand plans for the day consist entirely of moving six feet across the room… and I fricken celebrate those things! But here’s the bit people don’t always see or hear: Life isn’t easier. I honestly wasn’t prepared for how difficult this bit would be and ive struggled enormously with depression, because getting some of your life back is wonderful… but being able to do more doesn’t mean doing it is easy. Nope. Sometimes it meansFIGHTING like hell every day to just have a few hours of something resembling normal…all whilst knowing your body will send you the invoice afterwards. But then I remember the alternative. Stillness. Watching spring become summer, summer become autumn, autumn, winter from the same window… same walls. Watching everyone else live while you slowly become a spectator to your own life. I did that for years. So, given the choice? I’ll take the struggle. I’ll take the wheelchair. The bed days. The ridiculous heart rate when simply trying to move. The payback… and tiny victories nobody else would even think to celebrate And to everyone else living with Dysautonomia… I see you. I see how hard you work just to do things other people never have to think about. I hear the frustration. The anger. The grief for the life you thought you’d have and all those quiet what ifs nobody else hears. But you are not measured by how long you can stand, how far you can walk, how much you can work or how convincingly you can pretend you’re okay. You are enough exactly where you are, even if today, where you are happens to be horizontal X #Dysautonomia #PoTS #AutonomicFailure #DysautonomiaAwarenessMonth
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I was allowed to go out out today!! It was a bit scary, but I stayed in the wheelchair to protect my mummy from all da peaple and big trees… I might have weed on the carpet when we got back. This won’t be confirmed until my mum finds it, so until then, it never happened, ok?
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My mummies a bit poorly lately, so I fink I’ll be taking over here for a little bit. I’m Winnie by the way… hi! who are you?
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Winnie Pup: Why won’t she play wiv me??? I LOVE HER!! Sally Cat: What the actual f#*k is that thing still doing here, Mother? #CatsAndDogs
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