The reason for my concern and vigilance as we return to normal

As I mentioned the other day on my Star Wars Day post there is a sense that we and governments across the world want to return to ‘business as usual’, ‘normal’, or at least a semblance of what life was like before. 

As soon as possible!

However, this isn’t going to be the case for some of us, especially those that are immunocompromised and today I share the reason for my concern and vigilance as we return to a level of normalcy. 

I read an article by well renowned specialist Siouxsie Wiles which featured in the New Zealand Herald on 4 May. It was also published by The Spinoff where she shares what she knows about the current Covid 19 Omicron Outbreak and the new variants that have been identified in South Africa. 

She explains that “as most countries are winding down their testing and sequencing efforts South Africa continues to be at the leading edge of identifying new Covid-19 variants and they are currently compiling information about the newly recognised Omicron lineages, BA.4 and BA.5 which are responsible for a new rise in cases in South Africa, the country’s fifth wave of Covid-19.”

Siouxsie Wiles goes on to say that “it’s not clear at the moment whether what’s driving the rise in cases is:

1. BA.4 and BA.5 being more infectious,
2. BA.4 and BA.5 having mutations that help them evade immunity even more,
3. or whether everyone’s immunity from the last wave is now waning, making them susceptible to infection again.”

“It’ll also be a while before we know whether these new lineages are more dangerous than the virus already is, at least for people without access to the new antivirals.”

As I read through the remainder of the article the concerning aspect for people like me, who are immunosuppressed, is that “the Omicron BA.4 and BA.5 variant may be able to infect the deeper lung tissues.” 

She goes on to say that; “One big problem with the ‘getting back to normal’ phase that most countries have adopted is that it is putting immunocompromised people at high risk of infection…. Most people who catch Covid-19 will clear the virus in a few days or weeks. But some immunocompromised people are at increased risk of the virus replicating in their cells for many months.”

In conclusion, she recommends that we need to continue “doing our best to reduce community transmission and stop the virus from infecting immunocompromised people, we need to reduce the chances a large gathering could become a super-spreader event.“

The Coronavirus Pandemic is not ending any time soon.

It would appear that we are a long way away from seeing an end to the Covid pandemic – Period! Due to the nature of the virus and its ability to morph and adapt to the changing dynamics of the environment in which it tries to live.

But we need to keep holding on and doing what we can for the betterment of those around us. In this time some people have been badly affected, not just financially, emotionally, or even spiritually.

We need to draw strength from each other, encourage and build each other up in whatever ways we can, and to coin a phrase that many people are most probably tired of hearing already – Be kind! 

You see, for some, things may look dark right now, but the light is coming! So can I encourage those that can, to reach out and help where you are able, just maybe you will be that light for someone. And for those of you that are struggling right now can I encourage you to reach out for support from those that are willing to help and keep holding on!

I for one am thankful for what the government and people throughout the country, here in New Zealand, have been doing over the past couple of years to keep themselves and many others like me safe.

I appreciated the huge sacrificial cost and the effort required by all and sundry – and because of the faith that I have in The Light I’m not overly anxious or fearful about the way forward. For when I’m afraid I put my trust and faith in Him.

However, I’m sensible enough to put systems in place to protect myself, and although from time to time I may be a little concerned, I will remain pretty vigilant as we return to normal to ensure that I protect not only myself, but also those closest to me.

Unfortunately, I am unable to wear a mask as Scleroderma has affected my lungs and I find it extremely hard to breath while wearing a mask. In a few weeks time I will also be starting a new course of medications that will completely knock out my immune system for at least a couple of months – which on one level, in and of itself is enough of a concern as we approach the cold & flu season.   

Therefore, this means that I will need to remain shielding myself from “normal”, not going out during busy periods to meet others for meetings at cafes, restaurants, and going to shops etc. Limiting my exposure to larger group settings, such as church and including the work office environment as people continue to exhibit symptoms within the community. It doesn’t stop me from getting out and about – but it does mean I need to be extra careful and avoid certain situations and places that would put me at risk. 

For people just like me, we need to remain extremely vigilant and reduce the chances of infection as much as possible. So, I hope you can all appreciate these concerns and our vigilance as the world around us returns back to business as usual / normal.

Many Blessings 🙂

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I tested positive for Covid-19 in March, and I’m still horribly sick

The following article entitled “I tested positive for Covid-19 in March, and I’m still horribly sick“, originally appeared on The Spinoff and was written by Guest Writer Freya Sawbridge.

For me it personally resonates, as I can relate to the heart-cry “Something just isn’t right and nobody believes me“.

It’s not that ‘nobody believes me’ in my case, as I have tried to ensure people are aware of my diagnosis of Scleroderma & Raynaud’s.

The thing is though, that I may look OK on the outside, but something just isn’t right internally, as my body is literally working overtime to repair itself, unfortunately to no avail.

Covid-19, like many other rare disorders or diseases (including respiratory and autoimmune disorders) remain a relevant unknown factor in medical circles, and we won’t know the long term effects of it for quite some time, as specialists the world over get together and carry out numerous studies and tests etc.   

A small proportion of Covid-19 patients continue experiencing symptoms long after they test negative. Freya Sawbridge, one such ‘Covid long hauler’, describes what it’s like.

Four months have passed and I’m onto my fifth relapse. The room is eerily still yet my mind spins like the stripes of a barber’s pole. My brain pulsates and every vessel twists. Something is scraping the wrinkles in my brain as if a mini person is going at it with a tiny rake. The diarrhoea begins followed by the chest tightness and back pain. I dart between shivering and overheating. Different parts of my body are sporadically going numb.

I end up in hospital late that night. I’m designated “low priority”. Five hours later, a doctor whips the curtain back. I explain my issues and stress my “brain fog”.

“Brain fog? That’s not even a proper medical term,” she says. If you could walk in here, you are fine, she tells me. I’m sent home.

We’re told sickness has a linear trajectory. You fall ill, feel bad, and then gradually improve before you recover. But this coronavirus can work in a cyclical fashion. In my case, I was consistently ill for two weeks before feeling fine for four days then suddenly falling ill again for another two weeks. I spent the next two months relapsing and recovering. This follows a similar pattern to the hundreds of others still battling debilitating effects months after first contracting the virus, despite most of us now testing negative.

You might see me and I seem fine, because unlike many of the 5,500 members who belong to the “Long Haul Covid Fighters” Facebook group, thankfully I can walk and move about without feeling total exhaustion (extreme fatigue was never one of my prominent symptoms). I appear well but I am not. My functioning facade is vastly different from what I experience on the inside. I joined the Long-Haul Covid Facebook group three weeks after I tested positive for the virus back in March. This group has been my primary source of strength throughout this ordeal. I truly believe I would go mad if I didn’t have the kindness of other people in this group who still take the time to speak to me and validate my symptoms when so many refuse to.

I overhear people say they’re not worried about catching it. “I’m young, I’ll be all good,” they scoff. This could be true as many people are asymptomatic or present only mild symptoms. But there’s no guarantee of this. I am 26 with no underlying conditions and have been sick for the last five months.

There remains so much that isn’t known about Covid-19. We are now seeing studies which validate long-haulers and show it is not just “all in our head” or a result of anxiety, as many of us have been told time and time again. These stories and reports reveal how complicated and varied this novel virus is.

One recent report involving over 600 long-haul patients revealed that neurological issues are just as common a symptom (reported by 70%) as coughing. Hannah Davis of the Guardian explained: “Of those studied, 61% experience dizziness, 32% experience numbness in the extremities, 29% experience hallucinations or lucid dreaming and 27% experience short-term memory loss.” She noted that the Centre for Disease Control estimates 20% of young people with no pre-existing conditions will have prolonged recoveries, far beyond the two to three week estimate.

The nonlinear range of symptoms was also validated by the Covid Symptom Study produced by King’s College London. It showed patients experienced a variety of symptoms such as headaches, increased heart rates, chest pain, gastrointestinal and neurological symptoms for weeks and months following the initial infection.

Debbie Bogaert, an infectious disease specialist, is a Covid-19 long-hauler. She told the Guardian, “We currently have no understanding at all of the biological mechanisms causing these prolonged symptoms … This virus is not comparable to a simple flu. Therefore, we should focus on suppressing the virus as much as possible, even attempting to eliminate it, while we wait for the development of a vaccine.”

I can understand why there’s widespread ignorance in regard to the long-term complications of coronavirus because I’ve been guilty of this reaction towards other people’s illnesses in the past. When you are well and healthy you do not concern yourself with stories of sickness; you want to get on with your life and keep living. This is also why we turn a blind eye to images of animals in factory farms or civilians fleeing war-torn cities. We’re on a big comfortable launch riding the wave of privilege, why would we bother wondering how it feels to navigate the ocean from a dingy?

“Something just isn’t right and nobody believes me,” I cry with broken raspiness and collapse into my mother’s arms. I want my old body back. I want to go hiking. I want to live in Germany. Will I ever be able to do these things?

I am scared, but I feel immense gratitude for what I am still able to do. I can still sometimes read, go for gentle walks, have conversations. And I can write. These wrap my daunting “what ifs” in comforting cotton wool and make them a little less frightening.

So that’s what I will do, until the science is built, and more in the medical community start taking us long-haulers seriously and I emerge from the fog. I will write my way through it. My story will be a warning to others: This is so much worse than a cold.

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