It has been a year since thousands of kidney patients were advised to shield. In the weeks ahead these restrictions will be lifted and as we come out of what we all can definitely agree was a ‘challenging’ year we wanted to share some of the experiences of the team at Kidney Care UK. Growing up none of us expected to have to live through a global pandemic, but now that we are starting to see the light at the end of the tunnel we feel that we’ve come out stronger with a renewed passion to ensure no one faces kidney disease alone, and with renewed drive to provide whatever support is needed to help every kidney patient live their life to the full.
Nick – Head of Advocacy
"After 12 months of lockdown as a shielder, working from home and managing the demands of family life with a one year old and a four year – the end of lockdown can’t come soon enough, my wife deserves a medal and has missed out on lots of activities with the baby. To say it has been a challenge doesn’t quite do justice to how demanding life has been on top of managing dialysis at home and my own fear and anxiety of potentially catching COVID particularly when my daughter wasn’t being home-schooled. It’s also been very difficult for my mum 218 miles away in a care home who hasn’t always fully appreciated why we couldn’t see her. Thankfully I have recently been able to have a face-to-face visit with mum and sit next to her holding her hand and despite wearing full PPE it was a good experience for both of us, if a little fleeting at 45 minutes. Well worth the 400 odd mile round trip that took a whole day though! My physical health has arguably been the best in over a decade. I have been illness free, no cough, cold, flu or pneumonia for over a year which has helped me to sustain a running streak which started in the middle of March last year and is continuing – 5k runs two or three times per week. It’s also means that I started to play men’s league hockey after a 20 year absence.
To say it has been a challenge doesn’t quite do justice to how demanding life has been on top of managing dialysis at home and my own fear and anxiety of potentially catching COVID
The relationship that I have with my children whilst strained for obvious reasons sometimes has actually benefitted from lots of time together. We’ve had great food and home cooking has played a central role in our lives – indulging in a little of what we fancy! The last year has also provided time to plan our back garden – it’s just been a lawn since we moved in but by this summer we’ll have apple trees, colourful borders and raised vegetable plots and the kids get fully engaged in nature for years to come – I hope!"
Deborah – Editor of Kidney Matters magazine
"I’ve worked predominantly from home for the past five years, so in terms of my work pattern, the announcement last year telling us to work from home where possible didn’t worry me too much. The issue for me was more about lack of social contact and what to do with all that time I’d have spare, given I wouldn’t be meeting up with friends for coffee or our regular Friday evening meal in the local pub! I looked at what else I did or wanted to do to fill what I anticipated would be a few months confined to my house; I walk and I make stuff. I can make curtains and fix the fabric on my sofas when my dog Dougal’s claw rips through it and I have always admired traditional Amish quilts. Not just for their aesthetic appeal – so gorgeous – but for the skill and time you need to invest in creating one. The origin of these beautiful quilts rests way back with the Amish people in the mid-19th Century where simplicity and frugality governed all aspects of life and nothing was ever rushed. I am not so keen on the frugal bit, but I have to admit to a real need for all things simple and basic in my life.
So, having first raided Liberty of London for metres of gorgeous fabric (not so frugal, you see) I set about creating my first ever quilt to a traditional Amish design. Not quite authentic in that I didn’t sew much by hand, but I did spend hundreds of hours during lockdown at my old sewing machine following my intricate white pencil design all over the assembled pieces of Liberty material. Ta da…one lovely Amish design cover for my bed, where I sleep…. well after the many (many) long walks I do every week."
It was a big shock to be told that I was now ‘clinically extremely vulnerable’ and should avoid contact with, well, everyone
Fiona – Policy Director
"Having gone through the physical and mental hardships of kidney failure, and reclaimed a somewhat easier life after being fortunate enough to have a living kidney donation from my husband, it was a big shock to be told that I was now ‘clinically extremely vulnerable’ and should avoid contact with, well, everyone. I made a video for our website about being in this together and how resilient we all are. Looking back, while we were all in this together, the pandemic has affected some far more than others. If this was a stormy ocean, some had yachts and some had dinghies. While we are not alone it has been a very challenging time, to say the least. The fact that we now have a vaccination programme gives us room for hope, and I can’t wait till I get my 2nd dose soon.
What I am looking forward to the most is spending time with our daughter - I am very lucky to live with my husband, son and Ollie the dog at home but missing our girl. It will be a cautious return to walks with friends and sitting outside with other people in the sunshine seems very appealing just now."
Sumaya – Kidney Matters Magazine
"A year ago, no one would have known that lockdown was to continue into 2021. But looking back now, I realise the impact this has had on me and why my view on life has changed. I’ve spent most of part of the year shielding, working from home and feeling distant from family and friends. I have had good days as well as bad, but as I continue to live through lockdown, I have learnt that the only thing I can control is how I view life to be.
Many years of battling with CKD has taught me to be positive and content, whatever the circumstances. And a year on in this pandemic, I feel I have mastered it! Small things in life are now more meaningful than ever, walks along the river during lunch break, picnics in the car when it rains and movie nights out on the balcony, are all part of my ‘new normal.' Now that I am vaccinated, I look forward to a time when lockdown and shielding will be a thing of the past!"
William – Advocacy in Northern Ireland
"Before Covid my thinking/planning place was the jacuzzi and steam room at my local fitness club; here I was able to plan and prepare for my next day's work. But suddenly, overnight, this was stolen from me with the advent of Covid. Because of my shielding and being classified as CEV and the fitness club closing, I no longer had a place to think and plan. My new place for is at doing this in is a hot, bubbly bath where I listen to my Sad Songs playlist which is surprisingly uplifting, but most importantly it is safe!
How things have changed in a year; this period of Covid is not Survival of the Fittest as I had first thought, it is Survival of those who can Adapt. Renal and transplant patients are masters at Adapting to new challenges which is why we will always keep fighting CKD and COVID. In the bath photo you will see a Sponge, a Facecloth , a Lighthouse and an Octopus; A warm sponge squeezed over the head can ease anxiety; a warm facecloth can wipe away fears; the lighthouse shades light, gives direction and saves lives…and the octopus? I was just feeling lonely. We will get through this; together."
Sharon – Marketing and Communications
"The world as we know it has changed completely in the last year and its easy to look at the down sides; the weekends merge into the weekdays when there’s not a lot to do other than walk around the park or woods; I’ve only seen my mum and my mother-in-law once in the last year; I’ve not met my niece yet; I’ve still not mastered sourdough; and I’ve never worked such long hours in my life. However I’ve also learnt new skills; discovered a passion for finger and arm knitting; worked out that my husband and I can both work at home without driving each other insane; perfected banana bread; finally mastered the Floss dance; and seen my seven year old son flourish, grow and develop in ways I would have never seen had I not been spending so much time at home with him. I’ve also learnt a huge amount about my colleagues and with my colleagues – I’m definitely closer to many of them than I was a year ago and we’ve learnt new ways to support each other and support more kidney patients than ever before. Sadly I’ve not been able to get a pet like a few of my colleagues (that I am immensely jealous of!) but at the end of last year I found out I had been nominated as one of the Inspiring Communicators of the Year, which blew my mind a bit. I didn’t win, but that’s ok – it gives me a challenge for 2021.
I know that I have been very lucky to come out of the pandemic relatively unscathed, but we know that many haven’t been as lucky and this really hit us all when we lost our Chair of Trustees at the start of 2021. It’s reinforced just how important the work we do is and how we need to continue to do everything we can to support kidney patients throughout the UK."
It’s reinforced just how important the work we do is and how we need to continue to do everything we can to support kidney patients throughout the UK.
Linzi – Advocacy in Wales
"I always try to look on the positive side of things and the last 12 months are no different. In March 2020, my partner Owen was working 60+ hour weeks in hospitality and we were like ships that passed in the night. Whilst I am fortunate to have continued working from home, he was furloughed and eventually made redundant. Although finances have been difficult while he was out of work, I look back at all the time we’ve been able to spend together and the firsts we’ve been able to experience had the national lockdowns not happened. On 29th March 2020, we sat down to our very first Sunday lunch after years of living together, which has now become a weekly tradition. For the first time in 14 years, Owen had a Christmas Day free of work and we were able to spend the day together with his family. Like many others, we welcomed our dog Poppy into our home during the first lockdown and she has helped us maintain a sense of normality with daily walks and zoom call interruptions.
While not formally shielding, I have been stringently social distancing as I have asthma and wanted to be able to meet safely with clinically extremely vulnerable members of my family when the guidelines allowed. It may not be the year that any of us had planned for, but it’s made me really value my personal relationships and cherish the time we’re able to spend together."
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