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Awareness in Lockdown – 7Y2D COVID-19 Diaries Week 9

This week has been a focus for raising awareness for 2 causes close to our hearts: National Eosinophil Awareness Week (NEAW) and Mental Health Awareness Week (MHAW). It somehow feels apt that these two go hand-in-hand this week as we have so often experienced first-hand how closely linked life with EGID is with the mental health well-being of all in our family. This year that is even more important as so many of us are struggling with the changes that the coronavirus lockdown has brought with it and none more so than the young people in our household.

National Eosinophil Awareness Week: We have been very active in raising awareness about eosinophilic diseases for a number of years, but decided to start taking a step back from that last year. Eosinophilic Colitis (EC) was the initial diagnosis that we received for M all those years ago from his consultant at GOSH, but in recent times, the diagnosis criteria for this condition have faltered and existing diagnoses have been actively questioned by many within the medical community. These days conditions such as mast cell activation syndrome (MCAS) have been bandied about in relation to M, but ultimately the root cause of his health problems still remains a mystery to us all. As I’ve said so many times, having a name to put to his health issues has helped us all, even when very little is known about it, and I continue to use both his original diagnosis of EC and the newer one of MCAS when filling in paperwork or talking about M with other people.

Despite our own uncertainty about whether EGID is the correct diagnosis for M or not, I will always continue to encourage and support the fundraising and awareness-raising efforts of organisations seeking to research and understand this family of conditions more. Lockdown maybe stopping us doing anything active to raise awareness this week as we have in the past, but it’s good to be able to do my bit even from within the constraints of my own home.

Mental Health Awareness Week: Mental health well-being has been a buzz word in our household for a number of years and never has that been more important than now as we see the impact of 9 weeks in lockdown on us all. I’m a happy introvert, who enjoys spending time in my own company and so, in many ways, lockdown life is suiting me quite well. Regular contact with my work colleagues through Zoom and conference calls, webinars and online catch-ups with other friends is keeping me in touch with the outside world, which is especially important at a time when my T1D is keeping me at home.

However, I see a greater effect on Mike and the children and I think a lot of that is due to the changes to their daily routines. I am still working 9-5 every weekday, albeit from home and more often 8-7, but the 3 of them are going through a very different experience to me. Mike was furloughed from his job as a chartered surveyor on 1 April and for someone who is very used to being out and about as he values or surveys properties every day, the restriction of staying at home has been difficult. He is also much more of a social bug than I am, so not having daily face-to-face time with anyone other than the children and me has also taken its toll. However, that being said, the online capability to chat to family and friends across the world is something he has definitely embraced, even taking part in his regular whiskey-tasting evening via Zoom the other night!

As for the children, well G and M are almost a perfect reflection of Mike and me. G is comfortable entertaining herself and being in her own company, whereas M thrives on spending time with his peers as well as being constantly active and mentally challenged by them. Both have found lockdown difficult and we have worked, and continue to work, hard together to find the best outlet for their emotions as well as effective ways to meet their social needs. Chatting on WhatsApp or connecting via the PS4 has been a good solution and both are also having tutoring sessions via Zoom or MS Teams every week. This connection with people from outside of the family has been key to giving them something that is a very faint semblance of what they’re used to experiencing daily. Keeping them in a routine has also been important as Mike and I are very conscious that their return to school in September, after the best part of 6 months home-schooling, will exhaust them physically, mentally and emotionally from the minute they step through the school doors, if not before.

The buzzword for MHAW has been Kindness and considering what random acts of kindness you can do for others has been much encouraged. However, I think it’s key to remember that, whilst showing kindness to others in all situations is important, so is showing kindness to ourselves. We truly are living through extraordinary times and we shouldn’t feel guilty if we are not coping as well as we perhaps believe we should. Be that by taking some time to do something we love to do as an individual – bubble bath anyone? – or spending time relaxing with our family or even reaching out to a friend because we just need to talk, being kind to ourselves will improve our own well-being, which is something we all need right now.

The 7Y2D COVID-19 Diaries – Week One

Without a shadow of a doubt, the world as we have known it has changed radically in the first 3 months of 2020. The fast spread of the COVID-19 virus not just through Wuhan, China, but worldwide has shocked us all and we find ourselves living in extraordinary times. Times that go far beyond the much-fabled “interesting times” often quoted as an ancient Chinese curse*. Life will never go back to the way it used to be for most of us, if not all and so we have to search for our normal despite not really knowing when things will start to be more “normal” once again.

Our first week at home was mostly a good one.

G and M continue with their home studies, though some days with more dedication and, let’s be honest, success than others. They’re keeping up with the extra courses they’ve both signed up to as well and we’ve found additional activities to keep them busy. G has been using the Diversity online tutorials to hone some more dance skills thanks to their 20DV website and I’ve signed M up for online tutorials for his bass guitar through Fender. Stagecoach Performing Arts has also provided some at-home online learning videos, which helps break up what can be long days.

My 12 weeks working from home is off to a good start with all finance and banking systems working well on our home wifi. There are daily conference calls with the rest of the senior management, sometimes via Zoom, to review the situation across our charity and track the progression of COVID-19 through both our staff and the individuals we support in our homes. I’ve also scheduled weekly catch-up sessions with the other members of our finance teams to make sure they are all coping okay with their new work situation. Keeping an eye on the mental well-being of all my staff is critical in times like these and they have my phone number to be able to call or WhatsApp whenever they need.

It has taken a new level of cooperation and adaption for us all. Mike is used to working from home on his own. He takes to his study in the morning, may reappear for drinks or food and then disappears again until his day is finished. M and G each have work stations set up in our dining room and manage to avoid conflict by being plugged into their own devices as they study. I have set up on the 1 remaining downstairs in the kitchen, which works brilliantly for me as I have ready access to the kettle, but can prove challenging to the rest of the family when they look to escape to the garden or make their lunch.

The last week has been filled with rainbows, working from home and trying to convince 2 increasingly grumpy teens to keep going with their own home studies…and I think we just about managed to do it all.

*There is no clear evidence that the curse “May you live in interesting times” is in fact either ancient or Chinese. It is purported to have come into more common parlance in the early 1900s, in all likelihood in the UK thanks to Sir Austen Chamberlain, brother of UK PM Sir Neville Chamberlain. You can find a good explanation of this origin here. Chinese or not, it is now widely accepted to mean times of trouble, rather than of peace,