Tag Archives: health issues

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

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.

What does COVID-19 mean for you

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

Eating Out with Allergies in New York

As an allergy Mum, I try to do as much research as I can about eating out before we go and our Christmas trip to New York was no different. There were some absolute givens in our restaurant choices – Hard Rock Cafe New York anyone? – but we’re always open to adventure and seeing what we can find whilst we’re in town. My research had truthfully started 3 years ago, when Mike and I visited on our own and we found ourselves taking notes each time we found somewhere that might be able to feed the children or, at very least, allow us to buy some safe foods to eat in our hotel room. We travelled with our suitcase full of food as usual, so I knew that we would have enough snacks to keep G and M going once we arrived on Boxing Day and for the days to follow.

5 Napkin Burger was a restaurant we had actually found on our first night in NYC 3 years ago and we were delighted to discover that they are able to cater for gluten-, dairy- and egg-free diets too. Within 10 minutes walking distance of our hotel on 43rd Street, this proved to be the perfect location for our first night in NYC with the children and they enjoyed the meal so much that we went back a couple of days later with my Mum in tow. The restaurant was beautifully decorated for Christmas as well, which made it the perfect start to our surprise holiday. The burgers were succulent and tasty, the servers managed the pernickety nature of G and M’s food orders without batting an eye and the food was quite simply fabulous. I was impressed to see a small range of GF ciders, beers and other drinks also prominently displayed on their menu, making it a truly excellent restaurant for the free from diner.

Statue of Liberty Crown Cafethis was one of several unexpected successes whilst we were in NYC. Mike, the children and I needed to grab a fairly quick lunch after our climb to the Crown of the Statue of Liberty as we were headed off to the One World Observatory and 9/11 Memorial Museum next. I was hopeful we might find something that G and M could eat, even if it was just a plate of fries, so was delighted to see that the Crown Cafe also served gluten-free burgers. G chose to try their hot dogs, whilst M kept it simple with a grilled chicken burger. The portions were generous, the food delicious and more than enough to satisfy the appetites of my hungry pair.

Ellen’s Stardust Diner: This is a NYC must-do and somewhere that I knew we would have to visit with G and M. The breakfasts there are amazing, but definitely not M-friendly with the prevalence of eggs on the menu, so we instead opted for a late lunch on our penultimate day in the city. The queue at Ellen’s is nearly always lengthy, but it’s definitely worth the wait, in my opinion, and so it proved once again. The skies were grey and overcast, and fortunately my Mum had joined the queue whilst we headed back from a morning spent at the American Natural History Museum. We were seated at one of the upstairs tables, which were perfectly placed to allow both G and M to have uninterrupted views of the main restaurant itself. The menu is unquestionably limited for those with food allergies, so we were glad to spot a gluten-free pasta and meatballs option which M plumped for, whilst G stuck to her favourite of hot dog and fries, this time without a gluten-free roll. M had a generous serving which more than beat even his healthy appetite and G was left pleasantly satisfied by her meal. The highlight is, of course, the entertainment provided by the waiters and waitresses working in the restaurant and G and M spent a long time discussing who was their favourite as well as which of their teachers they thought might enjoy going to the diner.

Hard Rock Cafe New York: No holiday would be complete without a visit to the local Hard Rock Cafe (assuming there is one) and Mike ordering the local legendary burger. Centrally located in Times Square and less than 5 minutes walk from our hotel, we managed to fit in lunch before our afternoon at Radio City Hall. The good thing about the Hard Rock Cafe is that the children always have a few options to choose from and this time M decided to try something a little different and ordered the Smokehouse BBQ combo of baby back ribs and pulled pork. For her part, G stuck to her favourite of the BBQ pulled pork sandwich with fries and devoured every morsel as usual.

Grand Central Market, Grand Central Station: This was a great find for picking up some bits and pieces for a quick and easy lunch on the go. We discovered the NOGLU gluten-free bakery, where G and M were able to choose from a selection of baked goods including croissants for G and cookies for M. It was then on to Sushi by Pescatore to pick up some California rolls for M as well as a selection of sushi for Mike and me. Add to all of that some fresh fruit, salami and goats’ cheese and we had a perfect packed lunch to enjoy between sightseeing stops.

#FFFA20 Confectionery

Now, I fully accept that there may be some of you out there wondering what on earth a PWD* is doing even considering judging a category at the #FFFA20 called “Confectionery”, but let me assure you, it means that I don’t tend to over-indulge in the first few mouthfuls and with 35 entries in total – 32 of which were chocolate-based – that’s definitely a good thing! On a more serious note, my Freestyle Libre gives me the opportunity to have tight control on my blood sugars at all times and helped me keep things on an even keel that afternoon.

 

I love judging this category as I have 2 food-allergic children who enjoy the occasional sweet treat and it’s always a great opportunity to find something new to tickle their taste-buds. After a busy morning trying the delights of “Meaty and Fishy Ready Meals” and a wonderfully refreshing light lunch prepared by Michelle and her #FFFA team, we were ready and set for the challenge ahead. And believe me when I tell you that tasting and judging so many sweet entries really can present some problems, especially when trying to give constructive comments to the 3rd dairy-free dark chocolate in a row!

These were my highlights:

M&S Fizzy Dinosaurs: In a category that was dominated with chocolate offerings, it was great to find these sweet treats. It took a while for us to realise that M reacts to gelatine, so we are always delighted to find sweets that are gelatine-free and delicious. He and I both love sour, tangy, fizzy sweets, so I knew the moment I tried these dinosaurs that they would be a big hit with my youngest…and the speed with which the bag I took home with me disappeared would absolutely support that!

Truffle Pig Truffles: We tried several truffle selections on the day, and these stood out from the crowd with their wonderful Butter Nut variety, which was perfectly reminiscent of their more well-known dairy counterpart, Ferrero Roche. The peanut butter content obviously means these are not safe for those with nut allergies and disappointingly to me, even though they are vegan and delicious, they are not soya-free either. A great treat that would be a brilliant gift and make the recipient feel truly spoiled, but not one for our household yet.

My Sweet Chickpea: The surprise success story of the day for me, and one that has proved to be popular at home too. There were 2 flavours that we were lucky enough to try: cappuccino and coconut, and both were delicious. The chickpea was not at all detectable, something which I tried out and proved with G, who was surprised to learn it was a key ingredient. Dairy-free, soya-free, hidden chickpeas and snack-size – what isn’t there to like about these?!

Moo-free Sea Salt & Lime Chocolate: I am not the biggest fan of anything salty and I definitely do not like caramel, so the whole “sea salt and caramel” revolution has passed me by, even though I’ve successfully created a safe version for G and M. So, I was intrigued by the lime and sea salt flavour offered by Moo-free and this will probably have me raving for weeks about it. A perfect balance to the sweetness of chocolate and very definitely more-ish. This is my winner of the day, not least because it was one of the few chocolates that was both dairy- and soya-free.

All in all, it was a great day of judging with lots of memorable products and not too many that completely missed the mark for me this year. The final award winners will be announced on 28th April, so keep an eye on your social media to find out who won those much-coveted golds.

*Person With Diabetes

#FFFA20 – 5 years on

Last week saw me back in London for one of my all-time favourite events of the year: judging a couple of categories for this year’s Free From Food Awards (#FFFA20). It hardly seems 5 years since I completed my first stint and I can honestly say that every year since has been fantastic. It’s a day spent with an amazing group of people from the free from community, be they bloggers, allergy sufferers, parents of children with allergies, food manufacturers or producers. Every year sees me widening that tribe of mine and I absolutely love getting to know new people and oft-times linking faces to names I’ve seen across the various social media platforms I frequent.

This year saw me return to 2 of the categories judged at my first FFFA in 2016 – “Meaty & Fishy Ready Meals” and “Confectionery”. As ever I’m always on the lookout for new possibilities for both G and M and even more so this year as we see the number of safe foods for M slowly, but steadily increasing. I find it fascinating to see what products are entered into each category, particularly with the “Meaty & Fishy Ready Meals” as the range of options can be so wide. From 10am, we were tasting and critiquing breaded fish, breaded chicken, sausages, burgers, a few microwave meals and even a prepacked sandwich. What was particularly great this year was that there was nothing that was really dreadful and whilst not everything might have been to my taste, the final award winners are all very much deserved in my opinion.

My own highlights from this category include:

M&S Made Without Wheat Honey Roast Ham and Mature Cheddar Cheese sandwich:  Honestly, if I hadn’t known that I was eating something freefrom, I absolutely would never have guessed. Forget dry bread, hole-y bread, doesn’t-really-taste-like-bread bread…this sandwich was unquestionably as good as its gluten-filled counterparts and generously filled with ham and cheddar cheese. If I had to find a criticism, perhaps that it is a little limited in just being gluten-free, but that really is being incredibly picky. It didn’t really “fit” with the rest of the entries in the Ready Meals category, but with no “Foods to Go” category this year as part of the #FFFA20, I don’t object to it having been entered. This is definitely one that I would recommend to anyone needing or wanting to follow a wheat-free/gluten-free diet.

Co-op Irresistible Pork Sausages: “Wow!” – my honest comment after a taste of these sausages. We are, without a shadow of a doubt, a family that enjoys any meal including sausages and indeed G’s favourite and go-to meal is a plate of bangers and mash. These were delicious – juicy, succulent and absolutely more-ish, the description of these GF sausages as “irresistible” couldn’t be more accurate. We buy nearly all of our meat from our local farmers’ cooperative or from our small-holding friends, but it was great to discover such a good product at a competitive price in a supermarket chain.

Co-op Chunky Breaded Cod (MSC-approved): There were several free-from fish fillets to compare, as this photo shows, but this is the one that absolutely stood out to me. The crumb coating was crispy and robust and the piece I took didn’t fall apart on the fork before it had left the plate and reached my mouth. Well-seasoned, tasty and a balanced mouthful where the fish was definitely the highlight. Even better, the cod is responsibly sourced and MSC approved, which really made it stand out from the crowd.

Tesco Free From Chicken Korma with Rice: A more traditional ready meal in my eyes and a fantastic one at that. Not only gluten-free, but top 14 allergens free and included an interesting mix of brown rice and quinoa in the dish which made it stand out from a competitive crowd. It has been on the supermarket shelves for a little while as this was one of the dishes we were lucky enough to be sent to try just after their launch, but it reminded me just how good these ready meals really are. A rich creamy flavour, which was well-balanced and didn’t taste too watery despite being microwave cooked, something I have found to be the case with other similar ready meal options.

As you can see, it was a real mix of what I would consider the more traditional ready meals that are ready in minutes and foods that need little preparation other than cooking. It was great to see offerings from many of the major supermarkets and, whilst I didn’t mention them above, there were also some good options from both Aldi and Lidl. I love seeing more and more supermarket chains coming on board with their free from food choices and making them more available and affordable than they perhaps have been before.

A Night of SeriousFun

It’s no secret that I absolutely love listening to our local radio station. It’s a great opportunity to hear about local people and stories as well as the national and international news. Sometimes I’m lucky enough to hear a friend or acquaintance being interviewed and I’ve even been on the radio 4 times speaking about M, G and the impact that his EGID diagnosis and restricted diet have had on our family. One of my favourite times to listen is in the morning, when the regular presenter hosts his phone-in on a wide variety of subjects from the sublime to the ridiculous and it was this morning’s topic that triggered my thoughts for today.

Today is World Children’s Day, a day to focus on children and more specifically, according to the UN, To recommit to putting children first. For every child, every right: the right to be a child, the right to play and the right to be safe.”

And this made me think.

It brought to mind an event that Mike and I attended in London last week, the annual gala dinner for the SeriousFun Network, the global family of camps for children with serious health challenges, their siblings and families. We were there to support Over The Wall, the charity that runs the incredible UK-based camps that both G and M have been fortunate to attend over the last few years. Those camps work hard to help those children who go to feel “normal”, often for the first time in their lives and to realise that they are not as isolated in their experiences as they so often can feel, whether as the child living with the chronic illness or as their sibling.

I’ve spoken so many times about the impact that OTW has had on both G and M since the first time they went and those effects are long-lasting. Friendships have grown with those they’ve met at camp and for G in particular, those same people have become her tribe. Time and distance has made no difference to those connections they’ve built and each camp sees them re-establishing their friendships from where they left off in years before.

The gala dinner was a great opportunity to celebrate the work that the SeriousFun Network camps do across the world. Much to Mike’s delight we were seated, purely by chance, with a group of Canadians connected to OTW through their corporate giving and they managed to spend half the evening talking all things ice hockey with great enthusiasm. It is thanks to individuals, groups and companies like these that OTW have managed to increase the number of campers they take each year and, having broken their target of 1,000 campers this year, have now got ambitions to reach 1,200 children in 2020. We were entertained by a variety of great acts including 2019 Britain’s Got Talent winners, Twist and Pulse, singers and musicians Damien Rice, Charlie Siem and Diane Birch and comedian Steve Coogan as well as a few of the SeriousFun campers who have performed at Stage Night at their respective camps.

It was a lovely evening, spent with people who all have the same goal to support and bring a touch of the usual to the lives of children who are anything but. We feel privileged that since 2016 our children have benefitted so much from the extraordinary efforts of the surprisingly small handful of staff members and the huge army of volunteers working for Over The Wall. In a reality where M’s health challenges have been an unwelcome, yet prevalent feature, it can never be underestimated just how much of a difference OTW has made to both G and M, and Mike and I are already planning to join the party again next year.

This truly is an organisation that has committed to putting children first and focuses on that right of each child to be a child, no matter what else life has thrown at them.

Hair today…

…and gone tomorrow!

It’s an old joke, I know, but it sums up perfectly the start of the new school year for G. For those of you who’ve been following me for a while, you may remember that 2 years ago G took the plunge and decided to cut her beautiful long hair for charity. She donated the hair itself to the Little Princess Trust, who use it to create real hair wigs for children who have lost their hair due to intensive medical treatments. G also took the opportunity to raise funds for Over The Wall and it turned into an impressive occasion, leaving her with a very grown-up hairstyle as well as raising £500, which was then match-funded to create a staggering £1,000 fundraising total.

Over the summer months, G has been talking once again about wanting to cut her hair – I think the hassle of combing numerous tangles and knots out of it had all become too much – and so at the end of her second day back at school, she headed to our local hair salon and once again braved the cut. Mike suggested to her that she consider donating to the Little Princess Trust once again and as soon as she realised that there was enough length to allow her to do it, there really was no stopping her.

This time round she’s gone a little shorter than before, but it’s still an absolutely stunning style for my fast growing-up firstborn. We are so proud that she didn’t think twice about making the donation and even more so when she said that she wants to continue to donate her lengthy locks whenever she can. To paraphrase G, she wants to “…donate my hair, just like Dad donates his blood” – a fantastic ambition and who are we to argue.

Time to stop and smell the roses

New job, end of term, fundraising plans, health challenges, summer holidays… sometimes it really is nice to be able to stop and smell the roses, especially when they’re as beautiful as this bunch of flowers currently gracing G’s windowsill. A thank you from her Stagecoach school for all her help last week at their summer school – a small acknowledgement of her efforts and one that has very much been appreciated and enjoyed by us all.

We’re all taking a little time this week to slow down and appreciate life. With a couple of days off planned for the end of the week, I’m winding down to just spending some much-longed-for family time together and am wondering if I can convince the children to give up their technology for at least some of that time too. M is spending the week planning 101 things he wants to do with G before we have our break, whilst G tries her best to ignore him and focus on some gentle revision instead. Mike and I will complete as much work as we can and anything left outstanding will quite simply have to wait until we head back to our desks on Monday morning.

I hope you too get the chance to stop, take a breather and appreciate life in its fullest this week.

20 years of #mischiefandmagic

A lot can happen in 20 years.

In the years since our wedding in December 1999, our family has doubled in size and we’ve moved schools, houses and jobs at a rate that has to be seen to be believed. We’ve survived illness and loss within both our families and our friends, and continue to do so on a daily basis thanks to some long-term diagnoses that have oft-times caught us when we were least expecting them. Chronic illness has become a much bigger part of our lives that we could ever have imagined, but with that has also come some amazing friendships, connections and opportunities that we never even dreamed would happen and that, in many ways, I wouldn’t change for the world.

One such relationship that we have all absolutely come to value is the one with the charity, Over The Wall. They have been a phenomenal support to G and M since both first attended their camps in 2016 and are, in an almost unbelievable stroke of serendipity, also celebrating 20 years since they were first launched by UK businessman Joe Woods following in Paul Newman’s footsteps and the development of the Hole in the Wall Gang camps in Connecticut USA in the late 1980s.

So what are we doing to make this a year of note?

As far as our anniversary goes, I’m hoping that Mike and I might manage a night out somewhere special, though celebrating the week before Christmas can make that difficult as we negotiate the huge numbers of office Christmas parties that we inevitably encounter when trying to book a table anywhere without a lot of forward planning.

And, of course, it will come as no surprise that we are also working hard to raise awareness and funds to support Over The Wall’s ambitious plans to take a record-breaking 1,000 children to camp this year. Mike started the year in style with a sponsored polar dip on New Year’s Day and we’ve turned our hands to a few other things – some old, some new – to see just how much we can raise. We followed the “sparking joy” fashion and adopted a Marie Kondo approach to clearing out our wardrobes, committed to giving a regular amount each month and even stood in the entrance of our local Tesco superstore a couple of weeks ago to collect what we could and spread the word about the camps too.

We’ve taken OTW with us wherever we’ve travelled, sporting branded t-shirts, hoodies and bandanas with aplomb and almost quite literally went “over the wall” with them during our visit to Berlin.

G and M have obviously been a big part of many of our efforts, but are now launching an appeal of their own. Their yearning to do something truly spectacular has unfortunately been somewhat hampered by not yet being quite old enough to participate in the activity of their choice, but they have instead picked the next best option in their eyes and will be taking part in a sponsored indoor skydive at the end of this month.

How can you help?

Well, it goes without saying that any sponsorship you can give would be very gratefully received by G, M and OTW, especially if you can help them meet their fundraising target of £200 – scaled back somewhat from M’s original suggestion of £20,000 – by visiting their fundraising page here.

If you’re not able to donate, but live near a Tesco store in one of the following areas*, OTW is one of their Bags of Help Centenary Grants recipients until the end of August and by adding your blue token to their box, and encouraging friends, family and fellow shoppers to do the same, you will help them receive a significant grant that will be genuinely life-changing. Remember “Every Little Helps”, even if that’s by a blue token!

Finally, sharing the OTW message of #mischiefandmagic with friends and across your social media channels will not only help the charity reach even more of the estimated 50,000 children and young people living with serious health challenges across the UK, but sharing our fundraising page will hopefully bring even more cash donations pouring in to help them achieve their goals not only this year, but in the future too.

Thank you!

*OTW is currently starring in stores across: Perth & Kinross, Angus, Stirling, Fife, Clackmannanshire, South Ayrshire, East Ayrshire, Dumfries & Galloway, Scottish Borders, East Lothian, Midlothian, Somerset (inc Bristol), Wiltshire and Swindon.

Go Big or Go Home

June was definitely busy, but it didn’t really prepare me for the double whammy that hit as it was heading out the door and ushered July in in unbelievable style. Many of those who know me personally will have already seen this news and have stated the same thought in a multitude of ways, but I think my sister-in-law said it best what she commented “…M can’t go small, can he?..“!

It all started a few weeks ago when M came back into the house with 4 or 5 insect bites on either side of his waist. This is not an uncommon occurrence in our household as we are fortunate to live at the far end of a small village, right on the edge of farmland and during the summer months, M spends a lot of his free time running around our paddock, jumping on the trampoline and climbing trees. It sounds idyllic, doesn’t it? And, to be fair, it mostly is and the less perfect elements of insect bites and his reaction to cut grass are really small and insignificant in comparison. The bites were itchy and red, but nothing looked especially untoward or unusual, although 1 in particular on his right side appeared to have grown into a reasonably large welt thanks to his incessant scratching of it. I shrugged my shoulders, rubbed some cream on to it to relieve the irritation and promptly forgot all about it.

Fast forward 2 weeks or so and M was now complaining of a small lump on his ribs – the right-hand side once again – which was causing him pain and disturbing his sleep every time he rolled over onto it. After putting up with his incessant moaning, I finally capitulated and booked an appointment for him to see our GP to have it checked. I had spotted that that 1 bite was still in situ and now sporting a rather angry-looking red rash around it, so determined it worth getting that checked out whilst we were there too. Add in the fact that one of M’s classmates had been diagnosed with shingles the week before and I had yet one more thing swirling around the back of my head as something else to be mentioned as well.

As soon as M pulled up his shirt in the GP’s surgery, there was no doubt in my mind that we were going to be in for the long haul. As well as the suspect bite and small lump visible on his ribs, there was now a further red rash over his right ribs, which the GP didn’t hesitate to confirm as shingles with really nothing more than a cursory glance in its direction. He didn’t want to start M on anti-viral drugs straight away, but warned that if the rash spread, I’d need to get him back in as quickly as possible for a prescription – and 2 days later that’s exactly what I did. The small lump proved to be nothing more than an overactive and swollen lymph node likely to be the result of his body desperately fighting off the shingles infection and it was quickly dismissed.

However, it was the bite that really raised our Dr’s eyebrows and after a few probing questions from both him and me, I had a sneaking suspicion that I knew where we were headed with this rash. One week on, a 5-day course of anti-virals to treat his spreading shingles rashes and the third doctor’s appointment of the week, there was no question what was going on with M. The red rash circling his bite had become the most perfect bulls’eye rash and Lyme Disease was diagnosed instantly. Fortunately, we appear to have caught this condition early and we all have our fingers (and toes) tightly crossed hoping that the 3 weeks of strong antibiotics will stop the disease in its tracks and reduce the risk of ongoing problems from it.

We’ve been lucky. M is feeling more tired and achy than normal and has been heard grumbling that this double diagnosis hasn’t secured him any time of school. However, his indomitable spirit in the face of unquestionable challenges has shone through and he has determined that he was going to carry on as much as possible despite feeling truly under the weather. The shingles rashes are mostly gone and the impressive target rash of Lyme Disease is also fading as the antibiotics do their thing. There is no question that it all could have been an awful lot worse, but I do wish that M would start to listen when I say that there really is no need to take a “Go big or go home” attitude to life!