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Long COVID Care

@chronically__clare

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Clare.
Melbourne 📍
I'm a mum. A nurse in a previous life
I have long COVID ❤️‍🩹
Navigating chronic illness & sharing my experiences

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Self serve checkouts exclude community. Please feel free to save and share this to get some eyeballs on it.

Yes, I have emailed Kmart (screenshot in video). I did get a reply but it was very stock standard. Thank you for sharing your concerns, we will pass on to the team yadda yadda.

Accessibility benefits everyone. Please have a listen.

#kmart #accessibility #selfserve by @chronically__clare

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6 days ago

I'm in a slightly unique situation. I have long covid. And I'm a nurse. Was a nurse?

I started this page in the hope it would reach other people with long covid that perhaps weren't as fortunate as myself in terms of support and access to healthcare. Where you might learn something but also feel connected.

The other thing I hoped would happen is that the nurses and healthcare professionals I've worked with along the way might learn about long covid. And in turn, this would benefit the patient population they work with.

Well, this message. This message. Brought tears to my eyes. This particular nurse I used to work with is already a blessing to her patients. She's the type of nurse you want in your corner. A strong compassionate advocate. And to read this... well this is why I started sharing so vulnerably.

The potential impact on her patients now that she has an understanding of long covid could be massive.

Let's keep going 👊

ID a screenshot of a message I recieved over a video of a tree blowing in the wind by a lake. The message reads "I'm a telehealth nurse now and I assess a lot of patients with symptoms that no doctor can figure out what's going on for them. And my mind always goes to long covid and the symptoms you've been experiencing. Love that you've set up this page as awareness and no doubt you've helped so many people 🙌"

#LongCovid #LongCovidAwareness #LongCovidSupport #LongCovidClinic #ChronicIllness #Disautonomia #OrthostaticIntolerance #GLOWTrial #FaecalMicrobiomeTransplant #Nurse #Healthcare #Telehealth by @chronically__clare

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9 months ago

Today is long COVID awareness day. Which feels like as good a time as any to share my story with long COVID.

December 2022. My daughter was 4 months old and we both contracted COVID for the first time. It’s ironic now, but I had such fond feelings of that time as the two of us cocooned away from my husband and son so as not to spread the germs. We had days of cuddles, laying in bed, watching telly. It was actually lovely, apart from feeling a little ordinary with fevers and body aches.

Life went back to normal. By the end of January my husband had resumed his busy work schedule. He was spending Monday – Friday away and returning home for the weekends. I have always prided myself on being capable and independent and looked forward to the challenge of managing a 5 month old and 3 year old.

But then something changed. Slowly at first. I was so nauseous I could barely stand upright. I was dizzy. Brain fog. Bone tired. I told myself it was because the kids weren’t sleeping and therefore I wasn’t. Then one day I couldn’t leave the house to take my son to kinder. I did something I had never done, and rang a friend for help. Then I called my frail mum (in her 70’s with her own health problems) to come help me with my daughter. I couldn’t move off the couch. She saw me, then called my husband and told him he needed to come home.

Once he was home, she took me to emergency. Cardiac monitoring showed both bradycardia and tachycardia. All other investigations were normal. They gave me meds for the unrelenting nausea, gave me some fluids and chalked it up to a virus.

This marked the beginning of endless GP visits, tests, emergency visits. Holter monitors, iron infusion, MRI brain, colonoscopy/gastroscopy, stress test, lung function tests & more. My symptoms changed over the coming months. I lost 6kg due to the nausea. I developed severe shortness of breath, unable to talk in sentences. I was incorrectly diagnosed with pneumonia and sent home from ED with antibiotics. I was discharged from another ED with the advice to see a psychologist.

I was broken. Isolated. Becoming withdrawn. No one could tell me what was wrong with me.

Continued in comments

#longcovidawareness The photo shows a mum smiling & taking a photo of herself in the mirror with her baby on her hip. by @chronically__clare

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2 years ago

Bezisterim showing promise in early trials. I'll be waiting impatiently for this one!

ID I'm sitting in my parked car talking to the camera. I'm wearing a black dress with blue flowers.

#Research #ClinicalTrials #Neuroinflammation by @chronically__clare

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20 days ago

The Mellow Study! Calling all Melburnians with LC or ME - this could be for you! Please share with anyone you think might be interested. This includes healthy individuals for the control group 🙂

Email natalie.thomas@unimelb.edu.au for more info

https://redcap.link/TheMELLOWStudy for screening questionnaire

ID I'm sitting outside talking to the camera. There are red bricks behind me and the sun is shining. My long, brown hair is down around my shoulders & I'm wearing a black t shirt.

#Research #MellowStudy #ME #LongCovid by @chronically__clare

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a month ago

Possible link between autoimmune diseases and long COVID ✌️
This isn't new - we know much of this already. I still think it's great though to have mainstream attention on these issues.

Apologies for the sped up video - trying to keep it under 3 mins so it doesn't get buried by the algo.

ID I'm sitting in my parked car talking to the camera. My long dark hair is hanging around my shoulders. I'm wearing a green jumper.
#autoimmunedisease #longcovid #nationalgeographic by @chronically__clare

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a month ago

This is a lighthearted video but those articles are not. Firstly, HELLO? Do we know why there's been a surge in disability since 2020? The same thing happened after the Spanish Flu in 1918. Post viral health complications are not new. It seems putting your head in the sand isn't going anywhere either.

Secondly, disability and chronic illness can affect ANYONE at any time. No wonder people carry shame about using mobility aids with dickheads like this around. Mobility aids = freedom. Shame on them.

Stay cool legends ✌️

PS if we want to talk about entrenching a culture of economic inactivity lets talk about how I was an Associate Nurse Unit Manager for over a decade at a busy Melbourne hospital but after ONE covid infection I was unable to work again. Had to give up my job, my registration. Worked my ass off in my career - would much rather be unemployed & struggling to look after my kids 🙄

ID two mirror selfies of me with news articles overlayed. The first selfie I am dressed daggily in trackies, socks & thongs. The second I'm posing with a walking stick. The articles read

"The Telegraph - how having a disability became cool. Young women, nicknamed sickfluencers, are turning chronic illness into lifestyle trend and entrenching a culture of economic inactivity"

"Why are young women using walking sticks? A disproportionate number of Gen Z females are affected by vague syndromes and may be victims of social contagion"

#Sickfluencer #SocialContagion #Disabled #TheTelegraph #ChronicIllness by @chronically__clare

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a month ago

Mitochondrial transplant! Phenomenal stuff. Love @putrino_lab and colleagues for all the work they do in this space.

ID I'm sitting in my car talking to the camera. I'm wearing a big fleecy yellow and blue jumper. My long, dark brown hair is down around my shoulders.

#Mitochondria #Transplant #LongCovid #MillionsMissing #ChronicIllness by @chronically__clare

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a month ago

I'm the problem it's me 🙋🏻‍♀️

ID a photo of me sanding an outdoor table/benches with an electric sander. Text comes across the screen that reads
Is it self sabotage or is it living?
You finally come out of a flare. You finally have some energy. You decide to pick up the power tools 😅 You know you will pay the price. You dont yet know the cost. But you're so sick of playing it safe. You just want to live without the constant weighing up og every decision. Can you relate to this?

#SelfSabotage #ChronicIllness #GettingItDone by @chronically__clare

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2 months ago

All I want for my birthday is a cure! So stoked to see this kind of research. I know it won't happen quickly but I'm so stoked to see things moving forward.

ID I'm sitting in my car talking to the camera. I'm wearing a black denim jacket and my long, dark brown hair is down around my shoulders.

#BirthdayWish #LongCovid #MillionsMissing #ChronicIllness by @chronically__clare

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2 months ago

Friendships and community are what will save us all ❤️❤️

#ChronicIllness #LongCovid #Community by @chronically__clare

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2 months ago

Nausea driven by covid. Its not as common as some of the other long covid symptoms but for me personally it was the first very obvious indicator that something was wrong.

I had months of severe nausea before my diagnosis. It would come and go but it was debilitating when it was around. My daughter was only a baby and I was breastfeeding still. I eventually had to wean her early as I was so unwell. It was probably my worst symptom.

Thankfully it has almost entirely disappeared for me (maybe after 12 months?). I did have an episode earlier this year and it was honestly very triggering. It took me right back to those awful early days. Very grateful these episodes are few and far between!

#Nausea #GutMicrobiome #VagusNerve

ID
6 slides with a green background & a white outline of a heart in the corner. Each slide has different text (see below)

Slide 1
Symptom Spotlight. Nausea

Slide 2
What drives Nausea?

Gut microbiome disruption.

SARS-CoV-2 reservoirs in the gut

significantly impacts diverse microbiome community

lack of "good" bacteria, more likely for "bad" to flourish

induces long term inflammation & digestive symptoms

Slide 3
What drives nausea?

Damage to intestinal lining

SARS-CoV-2 can cause damage to intestine walls

this barrier weakens & becomes leaky

poor uptake of nutrients, bacteria may enter bloodstream

inflammation, digestive symptoms, pain

Slide 4
What drives nausea?

Vagus nerve dysfunction

vagus nerve plays key role in promoting gut motility, "rest & digest" function

vagus nerve (& broadly autonomic nervous system) often impaired in LC

poor signalling between gut & brain, gut stays in "fight or flight"

Slide 5
What drives nausea?

Serotonin depletion

serotonin important signalling role to vagus nerve which drives gut motility

persistent viral reservoirs disrupt tryptophan absorption

tryptophan precursor to serotonin

reduction in serotonin

poor signalling to empty stomach - nausea

Slide 6
List of sources by @chronically__clare

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2 months ago