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Community Spirit – 7Y2D COVID-19 Diaries Week 10

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.

Honing lifeskills – 7Y2D COVID-19 Diaries Week 5

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One of the unexpected advantages of living in lockdown has been seeing G and M start to take on a little more responsibility at home and honing some important lifeskills to see them surviving when they hit adulthood. I started with expecting them to fend for themselves at lunchtime, avoiding too many snack-based choices and including some healthier options to ensure a relatively balanced meal and, after a first week of moans and groans about what they were eating for dinner, sat them down to meal plan their dinners for the following week. They had to work together on agreeing meals that they would both enjoy and, where a compromise couldn’t be reached, settling on something that would be similar, but different. An example of this was the great lasagne vs. macaroni cheese debate, as G dislikes the texture of lasagne, whilst M would choose to eat anything but macaroni cheese. They agreed to disagree and so have one night in the week where they eat their own preferred pasta option.

Whilst planning their menu for the week ahead, G and M also had to take into consideration what staples we had in the house and what would need to be added to our weekly food delivery. We have been using a local food co-operative for well over a decade for our fresh fruit, veg and meats and they have been great at continuing to provide their food delivery service during the coronavirus crisis. The natural next step from meal planning was to get them more involved with cooking dinner as well, building off the cookery lessons they’ve both had at school. They were already well-versed in prepping their own fruit and veg for a meal, but they can both now competently fully make some of the simpler meals as well as working alongside either Mike or me with the more complex ones.

G and M have an undeniable sweet tooth and the last few weeks have been a great opportunity for them to flex their baking muscles too. The interesting thing has been that they have worked both together and independently when it has come to choosing and making their sweet treats. The starting point has almost always been to see what recipes they can find on my blog and then checking if we have the ingredients in the kitchen cupboards. So far, we’ve enjoyed chocolate cookies, shortbread and carrot cake and I can’t wait to see what they whip up next.

The great thing is that G and M are not only learning to cook and bake, but they’re also honing their skills in following a recipe and realising when sometimes it might need to be tweaked slightly to make the perfect dish. They’ve discovered the benefits of menu planning and experienced the frustration of when a key ingredient is missing from the store cupboard and needing to think on their feet to find an alternative. They’ve learnt to really work together, to listen to and respect what the other is saying and, when a compromise can’t be found immediately, to walk away and give each other space. I think that they’ve also discovered that cooking and baking can bring a much-needed therapeutic release from the tensions that we’re all experiencing from living on top of each other in uncertain times and re-centre their sense of emotional and mental well-being.

“It’s school kids, but not as you know it” – 7Y2D COVID-19 Diaries Week 2

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Two weeks into the UK-wide COVID-19 lockdown and we are all slowly adjusting to life as we currently know it. Everything was turned on its head a bit this week, when Mike was furloughed from his job in line with the government’s job retention scheme. This didn’t come as a particular surprise to us as so many businesses are having to consider carefully how they can best weather this storm, but it does mean that the dynamics in the house have changed as Mike adjusts to both life as a house-husband and the nuances of how I like my day to unfold when at work.

G and M are currently doing okay with the sudden and continued disruption to their daily routines, though the end of the week saw tempers fraying a little as they spend almost every waking moment in much closer proximity to each other than they’re used to and with no real end in sight. Our dining room has become their school room every morning until lunchtime, when they can then close the door on their virtual lessons for another day. Their school work is more challenging not just for both of them, but also for me as I try to juggle numerous conference calls, zoom meetings and my own workload with their needs of support and guidance with the work being set for them online.

G is capable of being reasonably independent with her learning and has faithfully put in 2-3 hours every morning on continuing her GCSE revision timetable. By the end of the week, school had added work plans to prepare the Year 11 students for their A-levels due to start in September, so, having asked me to buy the pyschology textbook for her, G will be beginning the introductory tasks set to prepare her for those courses.

M similarly is working really hard at the lessons and homework being set for him, but is inevitably finding the quantity of different notifications he receives overwhelming to cope with on a daily basis. We have talked about the best way for him to work through everything that has been set and agreed that a balance between those tasks with the earliest due date and those he’s most interested in is the best way to go. He is completing the online tests and either uploading or emailing his completed work for his teachers to check and review. I have been impressed with his attitude to approaching his school work and he is keen to not miss out on his learning by not completing what he needs to do.

Their afternoons are spent with a mix of outside exercise and some much-needed fresh air, alongside spending time on their electronic devices. There’s no question that they are spending more time in front of a screen than we would normally allow, but their phones, and even M’s PS4, have become invaluable tools for staying in touch with their friends. Whilst G is happy spending time on her own and exchanging occasional text messages with her closest friends, M very much misses the daily interaction with his school mates. A much-needed gaming session on Friday evening allowed

him time to catch up with a few of them and he was unquestionably happier for it.

I’m not really sure what week 3 will bring for us all. It’s technically the first week of the Easter holidays, but we’ve agreed to keep going with a few hours of schoolwork whilst we’re in the midst of this weird hybrid of school-holiday-home-life. I’ll still be “going to work”, though probably in Mike’s home office now that he’s on furlough and Mike will hopefully complete a few of those jobs that have been lingering on what my wonderful Canadian sister-in-law calls his “honey-do” list.

The 7Y2D COVID-19 Diaries – Week One

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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,

What does COVID-19 mean for you

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I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

Learning to Cook

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A few years ago we encountered some problems when G wanted to learn to cook gluten- and dairy-free recipes in her school cookery classes. Her teacher appeared reluctant to help G learn how to adapt the “normal” recipes to suit her dietary needs and even told her that she would have to bake a normal red velvet cake because baking an allergy-friendly one would require too much work. It was not the most auspicious experience we would have with their school and one that would leave me feeling a little jaded about what might happen when it came time for M to start his round of food technology lessons.

Fortunately, M’s Year 7 teacher was willing to work with us when it came to each of the dishes he would be preparing in class and all in all, it was a positive start to M’s life at secondary school. This year M found himself once more in the cycle of food tech classes and all I could hope was that his Year 9 experience would be as good as his Year 7 one. As luck would have it, his teacher this year was keen to make sure that M could learn how to cook safe food for himself just as his classmates do and encouraged M to adapt every recipe to suit his particular dietary requirements, no hesitation and no fear that it would be too difficult to manage.

Having a teacher that not only helped M learn to cook, but who was also interested to find out more about how and why we made the adaptations we do was a huge boost to M’s confidence. Her attention to detail and preparedness to make sure that the cross-contamination risks of sharing a classroom kitchen and work-spaces with other

13 and 14 year-olds were reduced as much as practicable helped reassure him every week he cooked. M even shared my blog with her as he wanted her to understand more about his condition and see the many recipes that I’ve already adapted to suit his various allergy needs.

From chicken biryani to a prawn stir-fry and chilli con carne to a cheese and potato pasty (although that one wasn’t safe for him), M flexed his cooking muscles and has learned some great new skills that will stand him in good stead in the future. Our thanks have to go to a fantastic teacher who didn’t see M’s food allergies as a barrier to him learning to cook and worked with him to make sure that his health issues don’t stand in the way of achieving whatever he sets his mind to: that’s inclusion at its very best.

Mini Adventures for October half-term

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Last week was October half-term for us and, after an almost painfully long term, it was definitely needed by us all. Our plans meant that both Mike and I took the week off work to spend on some mini adventures from home as well as finding the time to complete the inevitable bits of homework that G and M had been set for the week.

And what a week it was:

Monday: Homework squeezed in around orthodontist appointments and blood donations amongst other less-than-interesting things.

Tuesday: A lazy morning in before heading off for a 15-mile bike ride along a local cycle path. We had great weather for it and even took a packed lunch to enjoy on our way. What better way to round off our day, but an evening glued to the Great British Bake Off final and, thank goodness, complete consensus on the final winner!

Wednesday: An early start to drop Mike’s car off for its service before we headed to Hampton Court Palace. This was the first visit for Mike and the kids, who enjoyed the House, the gardens and the Maze, despite their initial reluctance for a visit to “yet another” place to keep Mum happy. We stayed overnight at a nearby Premier Inn, but had a very disappointing dinner at the attached Beefeater restaurant – somewhere I definitely wouldn’t recommend to anyone visiting with allergies.

Thursday: A mixed day today. Halloween is always difficult for me because it’s the anniversary of losing my Dad, but our plans for a fun-packed day at Chessington World of Adventures helped make it a better day than it might otherwise have been. It was surprisingly quiet at the park considering we were in the middle of half-term and the extra hours at the end of the day meant G and M could revisit some of their favourite rides several times as the dusk crept in. We were very impressed with the allergy information available and enjoyed a pizza dinner, with specially-prepared gluten- and dairy-free pizzas for the children. Definitely somewhere we’ll look to visit again.

Friday: Back home for a quieter day, which was just as well given the torrential rain that hit us hard. It was very much a day for curling up in front of the favourite and enjoying some TV before the weekly Stagecoach run for G and M.

It was a lovely week, filled with a little bit of everything – although possibly not quite enough sleep to see us through the next 7 weeks of term until Christmas.

World Mental Health Day 2019

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When I realised that this year’s World Mental Health Day was focusing on the subject of suicide and suicide prevention, I paused. I wasn’t sure that this was an area that I could write about knowledgeably and, in fact, even as I write this blog post now, I’ve got a constant thought in the back of my mind that it could be just as easy to press “delete” as it would be to press “publish” when I’ve reached the end of my musings.

I’ll be honest, suicide is not a tragedy that we’ve had to deal with firsthand. I know friends and colleagues whose families have been shaken to their very core because of the unexpected and sudden death of a loved one, but I can’t pretend to understand just how difficult it is to come to terms with that death, deal with the impact of it or find a way to somehow carry on with life “as normal”.

Can I understand what leads someone to believe that death is the only answer to their problems? Possibly.

I’ve never been in the position to feel that there is no other escape, but my own experiences with depression over the years due to my T1D, following the traumatic birth of M and the massive mental health impact of workplace bullying do perhaps give me a slight glimpse of how frighteningly easy it is to spiral downwards into the darkest of places and not know how to climb back out of that hole. Sadly, it’s been a truth we’ve also had to face with M in times when he has struggled to come to terms with the reality of his chronic illness and all the consequences that come with that; and we’ve watched G battle to overcome the challenges of having a sibling with health challenges. I’ve written about these experiences and how they’ve affected me, G and M many times and you can find those posts through searching “mental health” or “bullying” on my blog.

Today I saw this image posted on social media by our local NICU ward, a place I know well after the births of both G and M, and it perfectly encapsulates everything we should be teaching our young people about their own mental health: that no emotion should ever be considered to be wrong and, most importantly, that it’s okay to not feel okay.