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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May the Fourth be with You

Today marks Star Wars Day and the phrase “May the fourth be with you” has become synonymous around the world, especially among fans of the Star Wars franchise.

The earliest uses of this phrase date from 1978, a year after the release of the original movie Star Wars: A New Hope. By then, Star Wars was firmly established within American popular culture.

A year later in the UK the first widely known instance of “May the fourth be with you” was used to mark the new prime minister, Margaret Thatcher, assuming office. A rather clever newspaper advertisement was placed in The London Evening News declaring “May the Fourth Be With You, Maggie. Congratulations!”

Today, Star Wars day is celebrated in a multitude of ways across social media and often features on television so that fans can commerrate the day in whatever way they deem suitable.

The thing that strikes me though on this day is that when you look at the many characters across the franchise they often face massive life-changing events that are best characterised as being extremely traumatic.

The rising power of the oppressor(s), the death of a father / loved one, or even a complete civilisation, the ultimate sacrifice of self for the betterment of others, and the list could go on.

In each of these instances there is an acceptance that life as they know it will never go back to normal, things as they know it are irrevocably changed in a moment forever, and the characters lives are to. They often become better people because of the things that they experience (both good and bad), although for some obviously this is not the case.

But it got me thinking in relation to our own lives, the past few years with the coronavirus pandemic upsetting the equilibrium of our lives, has caused massive upheaval on so many levels.

We have all experienced trauma in one way or another, some to a lesser degree than others (but we have all experienced it) and we will in effect never be the same again.

And even though there is a sense that we and governments across the world want to return to business as usual or a semblance of what life was like before – this is not going to be the case.

We have all had to make adjustments to the way in which we live and we will continue to do so, our lives have been irrevocably changed. In some ways for the better but regardless we need to adapt to a new way of living out our lives.

I recently read a quote from Catherine Woodlwiss on facebook that says; “Trauma permanently changes us. This is the big, scary truth about trauma: there is no such thing as ‘getting over it’. The five stages of grief model marks universal stages in learning to accept loss, but the reality is in fact much bigger: a major life disruption leaves a new normal in its wake. There is no ‘back to the old me’. You are different now, full stop!

This is not a wholly negative thing. Healing from trauma can also mean finding new strength and joy. The goal of healing is not a papering-over of changes in an effort to preserve or present things as normal. It is to acknowledge and wear your new life – warts, wisdom, and all – with courage.”

The thing is, if you have a Christian faith like me, we have something that we can fall back on in times of uncertainty, stress and trauma to help guide us forward into whatever the new normal looks like.

Regardless of what we have to face, illness, change, frustrations and fears – We can put our faith and trust in God, and have confidence in Christ.

This is what Psalmist wrote in Psalm 16 (The Voice) “Protect me, God, for the only safety I know is found in the moments I seek You. I told You, Eternal One, ‘You are my Lord, for the only good I know in this world is found in You alone.’

The beauty of faith-filled people encompasses me. They are true, and my heart is thrilled beyond measure. All the while the despair of many, who abandoned Your goodness for the empty promises of false gods, increases day by day…

You, Eternal One, are my sustenance and my life-giving cup. In that cup, You hold my future and my eternal riches. My home is surrounded in beauty; You have gifted me with abundance and a rich legacy.

I will bless the Eternal, whose wise teaching orchestrates my days and centers my mind at night. He is ever present with me; at all times He goes before me. I will not live in fear or abandon my calling because He stands at my right hand.

This is a good life—my heart is glad, my soul is full of joy, and my body is at rest. Who could want for more? You will not abandon me to experience death and the grave or leave me to rot alone.

Instead, You direct me on the path that leads to a beautiful life. As I walk with You, the pleasures are never-ending, and I know true joy and contentment.”

We are all on a journey and face many challenges and have to deal with trauma throughout our lives and like any journey, sometimes it can be difficult to see the way forward or even which direction to take.

But don’t fret! Don’t be worried or afraid, embrace life and stay close to Him. Focussing on God and His goodness is so important in our lives, because it can give us “Hope” in our darkest days.

So, root your life in the Word, and He will make known to us each the path that we are to take in this world in which we live, one step at a time. For His force (the Holy Spirit) is within us guiding and directing us as we journey through crises and traumas that we face.

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I Had Already Died

About the same time that I was sharing the latest update on my health condition last week, I came across the following post entitled “I Had Already Died” on the ‘Join Us Down The Illness Rabbit Hole‘ site.

It resonated with me on so many levels as I found it not only personally relevant to life dealing with an incurable disease and pertinent to my faith.

But I could also identify with the author, especially when it comes to having to explain to others what my condition is and how potentially serious it is.

Even more so in the Covid environment in which we live in today!

The thing is outward appearances can be deceiving. Often people can look at me and comment that I’m looking good, there doesn’t look like there is anything wrong with me.

A bit like the image of an apple that appears juicy and perfect to eat, yet when you slice it open you find that somehow the insides are damaged.

Believe me there have been times when I do wonder if it is all in my head, as one day I can be right as rain, accomplishing a whole heap of tasks and feeling good, pushing myself just a little bit to do more and more. The next day I’ll be struggling to get the motivation needed to start the day due to slightly over doing it the day or two before.

You see, there is an ongoing internal battle happening inside my body that is demanding more and more of my energy reserves just to keep me going, and sometimes when the energy reserves are depleted – their just aint nothing left to recoup without prolonged periods of rest and recuperation.

A woman from Maine called Em who is a wife, mother of 2, and grandmother of 3 writes:

We are all dying. People who are battling health issues, are just more aware of this

I get asked all the time, how do I deal with knowing I have an incurable illness & I could die. This always perplexes me. No one knows when they’ll die. We do know that we will all die.

I actually find myself focusing more on living right now, in this moment, than I do on dying. A lot of healthy people seem to waste a lot of time, having a lack of appreciation for every minute. Whereas people with an illness, treasure every second and they are keenly aware that death comes for us all.

I’m a firm believer in the idea that we are only given so many minutes to live. How many minutes we will get is on God. But how we spend those minutes is on us. I have always told my kids, “Don’t waste your minutes”. I pretty much say it to everyone now.

I have no idea if I’ll live an average lifespan or if my life will be cut short due to my illness. None of us know these things. Since I got sick, I’ve been trying to live in the present, to count my blessings, to notice things more & to never take my minutes for granted.

A couple years after my diagnosis, I thought to myself, my grandchildren will never know me healthy. That new people I meet, are meeting a completely different “me”, from the one I used to be. It was in that moment that I realized I had already died. The old me was gone. This is the me I’m stuck with, the me born out of illness. It was up to me to shape who I was to become.

I’ve had to accept many things. Death being one of them. I will fight to get as much enjoyment & meaning out of my life as I can.

I will live, love, learn & laugh fiercely. I will do my best to NOT waste one minute.

Imagine a world where we all realize we are dying. Where we choose life & never waste our minutes.

You can read more of Em’s posts here.

As a Christian after reading this I was left with some thoughts and feelings to ponder – Firstly that I can relate to the idea of leaving the former things behind, the old life has gone and a new one is dawning.

I’ve had to do this numerous times in my life, moving from one side of the world to the other as a young fella and then shifting houses and appointments often leaving people that I’ve grown to love and appreciate behind as we develop new friends and establish ourselves in new communities.

New people that I meet do not know the kind of person I used to be – My life has been indelibly changed on so many levels through these experiences and sometimes I wonder what life would have been like if I’d been able to settle down in one location.

Even now with my illness there are some things that I thoroughly enjoy that I’ve had to stop doing, which could get depressing if one was to dwell on it for too long.

But we gotta keep on moving on in life and living for the moment, because we don’t know if it will be our last. And I don’t want to sound flippant here but too many people get hung up on stuff that they don’t need to worry about.

Secondly, I have died to self and I try to live my life in such a way that I challenge, encourage and build up others as best as I can and when given permission to do so – Hopefully providing much needed inspiration to others as they face challenges in their own lives.

God doesn’t say anywhere in the Bible that we are going to have a cruisy life, in fact quite the opposite, but He does say that He will go with us. And He invites us each into an awesome adventure that is to involve others.

And I’d like to think that when people look at my life they will look back at it and say that I was able to inspire others to better deal with whatever they were going through and that my example invoked something within them to aspire for something more.

You see, thirdly I try to look to the positives, I’ve always been a bit of an optimist. I try to look and find a way forward to a brighter and better future regardless of what we are facing in the moment – and I’m also prepared to give anything a go.

Even more so now, especially when it comes to options around medications and the like – After all the medications that we could try may just work.

And we have gotta believe that with the advancements being made with medicine all around the world as the countries around the globe grapple with how to respond to the Covid pandemic and treat respiratory diseases, that a cure may be found – or at least new medications will be developed that will assist those affected like me with Scleroderma and Interstitial Lung Disease, or other Autoimmune Diseases and Disorders feel better and lead a healthier lives.

Bing Crosby sang about accentuating the positives, I may be showing my age just a tad here, although in many regards the song was released way before my time 😊However, when we do focus on the positives we may start realising that we can get through whatever we are facing without getting too bogged down in the negatives.

We only have this one life to live, so we may as well live it to the full and enjoy it to the max for Jesus came to give us life so that we can have joy and live it abundantly, according to John 10:10 (The Voice).

I choose life and don’t want to waste another moment – How about you?

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Health Update #6

I figure it’s about time for another health update – even if to a large degree there is not a lot to report.

Over the past couple of months I have had a follow up appointment with my Respiratory Specialist and an appointment with another Rheumatologist to get a secondary opinion and to confirm that he would be able to assist the Respiratory Specialist by facilitating the process to get a course of Rituximab into my system, that may have some health benefits.

In the meantime more tests; another lung function test, echocardiogram, even more blood tests and follow up appointments to ensure that things have not progressed anywhere else .

Thankfully this has not been the case and generally for the most part my condition has stabilized. My breathing and SpO2 levels have also remained relatively stable (albeit a bit on the low side) over the past few months, however this is now reliant on having to remain on the steroid drug, Prednisone.

The last time that I tried to taper off this drug I started to get knocked around quite a bit, with wicked bouts of fatigue and feeling blah most of the day. I was functioning for the most part and able to accomplish many of the things assigned to me through work.

To some degree working from home during this time of Covid has been a blessing as those days when I feel unwell (hit by a bus), I tend to sleep the morning off and then accomplish what needs to be done for the day in the afternoon, before going through the rinse and repeat cycle the next day 🙂

It has meant though that from time to time I’ve had to bale on a meeting at the last minute, as the fatigue and general sense of feeling unwell, or struggling to breathe can come on at a moments notice.

Again thankfully though, now that things seem to have stabilised for the time being this seems to be a once a week kind of thing rather than every few days.

On the flip side I have had to focus on remaining positive and upbeat about my situation more than normal as working from home in isolation does have its drawbacks. I’m extremely appreciative of those that continue to reach out and support me through this time, be that family, friends and work colleagues, or even those that are following my progress online.

You have and continue to remain an important part of ensuring my mental health and well-being is not an issue in this time of uncertainty and frustration.

I value you each and want you to know that you are truly a blessing to me!

As the writer of Proverbs 27:17 says;

“As one piece of iron sharpens another, so friends keep each other sharp.”

(Easy to Read Version)

The thing is, as much as posts like this and other words of encouragement that I write online uplift and engage with others to help them, as they either support someone who has an incurable disease or they’re going through it themselves – it also encourages and uplifts me to know that God is using my experiences to impact the lives of others and hopefully influence them to continue positively battling away and drawing on the collective help that others can provide.

Recently I met with someone that expressed this to me and I was moved as I reflected on it later that I have played a small part in encouraging them to not give up and remain strong in the faith even when faced with such adversity.

So, in regards to any advancements around the next stage of medications we remain in a bit of a holding pattern until we get confirmation of any appointments at the hospital.

Hopefully this will be within the next few weeks.

Obviously in this Covid season the next course of medication comes with some major risks as it will knock out my immune system completely from what we understand and may not be effective at all with regards to my condition – but we figure that we’ll give anything a go if it helps prolong my productivity and health, even for the short term.

So we wait! All the while being careful in our interactions, avoiding large crowds of people and not meeting in enclosed offices and rooms.

This has not prevented me from getting out and about from time to time, and I try to do this at least once or twice a week. But obviously I need to take precautions as I’m unable to wear a face mask, so I tend to dodge the busier times – Afterall, who doesn’t like a cuppa and a slice with good company 🙂

While here in New Zealand the Covid Traffic Light restrictions have been eased it is therefore still wise for me to remain isolating (or shielding as the UK term it) while cases of the pandemic are still circulating around the community in their hundreds.

Systems are in place to fast track me through the Hospital Emergency Department (if required) to get me or those living with me the relevant medications to prevent Covid having a detrimental effect on us.

FYI – I have created a page under the Scleroderma & Raynaud’s tab which has links to my other health updates that I’ve posted since my diagnosis for those that want to know and follow what is going on for me in my world at the mo.

Blessings ’til next time 🙂

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Reimagining the Methodology

In light of one of my recent posts Why Gathering with the People of God Matters I feel it is timely to revisit a few that I wrote a while ago about this whole area of reimagining what church could look like going forward.

I hope that people find them beneficial blessings ’til next time 🙂

The life and times of Perry...

So far this year we have seen a huge amount of upheaval within the church. Churches have had to pivot quite significantly, morphing and shifting their methodologies of ‘doing church’ in ways that many simply weren’t anticipating.

The Covid-19 pandemic that continues to sweep across our world has dramatically changed our lives and turned our world upside down, and the pain and anxieties that this causes around us are real. (At the time of writing this blog entry their have been over 800,000 deaths worldwide).

With so much upheaval, we have seen a huge amount of change! Many churches and Corps have seen ministries, activities and programmes closed down due to social distancing requirements, only for them to reopen for a time, and in many cases close down again. This has seen most if not all churches across the world having to re-access, or reimagine their methodology.

According to an…

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