Category Archives: Personal

Welcome to 2019

It feels a little strange to be putting fingers to the keyboard and sharing news with you all once again. Since the last time I wrote, we’ve celebrated Christmas, seen in the New Year, made some big decisions about future plans and the children have headed back to school. Mike kicked off the New Year in style – something I’ll share more about in my next post – as part of our family commitment for 2019.

To be honest I was glad to see the back of 2018, which had challenged us all from almost the beginning of the year, thanks to a nasty bout of Aussie ‘flu and…well…everything else that then followed on from that. Don’t get me wrong, it wasn’t all bad and there were also lots of highlights from our year to celebrate too. Unfortunately and almost unbelievably, 2018 finished in much the same way it started with the sad news that one of my Godmothers passed away just before Christmas and 2019 obviously didn’t get the memo that it needed to improve on our experiences and kicked off with further news of ill-health for both friends and family.

However, I’ve learned some important lessons in 2018 and will be taking them forward into our New Year. I have some wonderful freefrom finds to share amongst other news and I’ve no doubt there will be discoveries and adventures to write about as 2019 unfurls.

Here’s to a year of discovery and wonder for us all.

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Supporting local business

As Christmas fast approaches, we are all in that mode of frantically searching high and low for the perfect presents for our loved ones, or, at very least, the best price for whatever it is they want. My two are complete opposites when it comes to writing their Christmas wish lists: M knows exactly what he wants, be it the latest computer console and games (PS4 and Fortnite), musical instrument (electric bass guitar plus amp) or the slightly more random Tempur mattress (just don’t ask). Whilst these all come with a significant price tag and the ongoing conversation about having any one of them as a joint Christmas/birthday present, at least we know what to look for, although I’m not convinced he’d be that happy if all he got was a new mattress!

G, on the other hand, is a little more challenging. For the last couple of years, her list has been small and fairly inexpensive, which is great from a financial perspective, but far more challenging given she’ll be turning 15 just 2 weeks before Christmas and various family members want suggestions for both occasions. Having given the best idea to my Mum, I’m not quite sure what Santa will find to leave in her stocking this year, but hopefully with some hard work, heavy head-scratching and even brainstorming, we’ll get there in the end.

One of things that I love to support is local business whenever possible and I’m sure I’m not the only person to have spotted the memes on social media asking folks to consider buying from small, local businesses at this time of year to find something truly unique when it comes to gifts. We’ve been doing our bit to support our local business community for at least 10 years and love discovering new opportunities to do so along the way. We started with buying our weekly groceries from our local food co-op, who source local meats, dairy products, fruit and vegetables, baked goods and even ready meals and deliver to our door. They work very much in the same way as some of the bigger names in this market, but with all the added benefits of locally grown and produced seasonal products, thus reducing our carbon footprint as much as possible. Our nearest big city has an active fruit and vegetable market too and so they can also offer the more “exotic” items, such as bananas, which means we’re not heading to a big chain supermarket for just a handful of groceries too often.

Over the last 15 months, we’ve been supporting another local enterprise and one which is bringing great health benefits to us all. A local farm has converted one of its unused buildings into an environmentally friendly swimming pool, using water from its own bore-hole and heated by burning grass grown on the farm. It has a limited occupancy due its size and so rents the pool out on a private basis to small groups, who can book a regular time slot to spend there swimming. Every Tuesday evening at 8.30pm, our family can usually be found eagerly splashing into the pool, ready and raring to go for 30 minutes swimming time. It is conveniently close to us – just 10 minutes from home by car -, impeccably kept and we have developed a passing acquaintance with the 2 groups, 1 family and 1 a group of friends, who swim in the slots before us. We are allowed access to the spacious changing rooms for the 15 mins before and after our slot and despite my fears that M and G would dawdle, they both manage to get themselves showered, changed, dressed and ready to go by 9.15pm at the latest.

Even better, not only does this local farm provide this fantastic facility which has seen M’s confidence in his swimming skills soar whilst G, but we are also able to buy fresh eggs from the farm door on an honesty box system and their Christmas offerings include beef and turkey. I have long said that we have the best of all worlds where we live, being just 8 miles from the centre of a vibrant city with amazing theatres, music venues and sports stadiums, but having a cottage on the edge of farmland and being able to see fields and green spaces for miles. The children have grown up with a dairy farm just across the road and are accustomed to seeing cows or sheep in the field next door whilst they’re bouncing on the trampoline in our “paddock”. I love being able to access so many things so easily, even the coastline is just 20 minutes away, and truly appreciate and understand just how lucky we are. Supporting the small, local businesses that are trying to survive and thrive in challenging times is just one way we can help our local community continue to grow for years to come…and hopefully will help me source some great presents for G in time for December!

14 years

“…But it’s been
Fourteen years of silence
It’s been
Fourteen years of pain
It’s been
Fourteen years that are gone forever
And I’ll never have again…”

14 years since I last spoke to you; since I heard you laugh out loud at Terry Pratchett books; since you held my hand or shared a story. It’s been a tough year and we’re now missing not only you, but other much-loved family members to spend time with. 14 years too long xxx

 

 

#NEAW2018: E is for Educate

May 20: E is for Educate

When M was finally diagnosed with EGID 5 years ago, it came at the end of a long, relentless and frustrating battle with the medical profession to have our concerns heard and acknowledged; and not simply be dismissed as over-protective parents; or worse. By the time the diagnosis was actually formalised, I had done a lot of my own reading around the subject and already knew as much about the condition as was readily available online. In the 5 years since that hospital appointment, we have found ourselves continually having to educate those around us, including the medics, who know little to nothing about what is becoming an increasingly controversial diagnosis, especially when it affects the lower GI tract as M’s does.

EoE, or Eosinophilic Oesophagitis, is becoming more widely recognised and the diagnostic criteria for this condition are well established, not least thanks to the continued research of Dr Marc Rothenberg and his team at Cincinnati Children’s Hospital. When it comes to the rest of the GI tract however, there opinion is very much divided. There are no clear guidelines as to how any of the other Eosinophilic disorders should be identified and diagnosed; and as the recent documentary about GOSH revealed, there is definitely no consensus on how they are best treated. One of the biggest problems facing children like M is the minimal investment into the research of gastrointestinal disorders and the fact that there is absolutely none into paediatric gastro research. With the credibility of EGID as a “real” chronic illness under debate, consultants all too often veer away from it as a possibility and either move towards a more psychological diagnosis or simply shrug their shoulders and leave these individuals to cope on their own, with little or no regular input.

Whether you want to lay the blame of M’s health issues at the feet of eosinophils, or mast cells, or indeed any other type of white blood cell that could be causing his body to attack itself and react to more foods that you can even begin to imagine, I don’t really mind. I’m not one to hang my hat on labels particularly, especially when that label has no meaning for the greater proportion of the people that M comes into contact with on a day-to-day basis; but I also know that being able to put a name to a problem lends a sense of genuineness to his symptoms as well. As a family we’re not able to walk away from the reality of living with this condition day in and day out because every week we experience the effect of it. I’ve said it before, I’ll say it now and I will no doubt say it many times in the future:

The symptoms that M suffers are very real and can be hugely distressing at times.

M is absolutely your average 12 year-old. He has attitude, he knows it all and he could argue that black is white with the best of them. He loves computer games, fantasy stories and endlessly watching Star Wars or Marvel films. He runs around and is noisy and can drive even a saint up the wall at times. He doesn’t look ill and I’d defy anyone who doesn’t know him to pick him out as the “sick kid” in the line-up. But that’s the face he presents to the outside world and reflects the attitude to his health that Mike and I have worked hard to engender within him.

What you don’t see is the worn out child who can’t move from his bed at times because of the pain and lethargy that accompany a flare-up. You don’t hear the quiet heart-to-hearts late at night, when he’s struggling with yet another reaction and doesn’t understand why it’s happening to him again. You don’t feel the despair that hits hard after another food causes soul-destroying disappointment because it’s clear that he just won’t be able to eat it without problem. And you can’t imagine the heartbreak of seeing the quiet acceptance that he won’t be able to go to a friend’s sleepover or away on school camp because of the possibility of suffering an embarrassing symptom that none of his friends really understand.

That is the truth of life with EGID and that’s the reason we will always endeavour to educate those who come into contact with M as well as the rest of the world in whatever way we can.

New beginnings

It’s hard to believe that 2 years ago I was working as an accountant in a small local, family run practice, happily going from home to school to work and back again, never imagining that big changes were just around the corner. Less than 3 months later, I was made redundant overnight, quite literally, and unexpectedly found myself back on the hunt in the job market, not quite sure where I was headed, but knowing I wanted something new.

I decided to make what felt like a strategic decision about a change in my career path and chose to move into the charity sector. My new job was with a local museum, which was moving from being purely a project to becoming a successful operational business and it has come with a series of challenges, ups and downs, long hours and late nights. I have had to work out a way to deal with the unpleasant reality of workplace bullying and have come out the other side, hopefully a stronger person for it.

All things considered, the last 18 months have stretched and developed me in so many ways and I have had the pleasure of working with some of the loveliest people I have met in my working life. So, tomorrow is going to be a tough and no doubt emotional day. Back in January, for a number of reasons, I decided that the time was right to move on and tomorrow is my last day at the museum. I am taking up a new role as the Head of Finance and Premises with our regional Air Ambulance charity and I can’t wait to get started. I have been privileged to be a part of an exciting new venture and I will miss massively the people who have supported me, laughed with me and had the odd drink or 3 with me since I began. I wish them all every success with their future careers, wherever their paths might take them and I’m looking forward to embarking on the next part of my own adventure.

And I’m back!

You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.

But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.

It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.

Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.

Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!

Marking 100 years of Votes for Women

2018 is an important year. This year marks the centenary of the end of World War 1 and there are a number of events planned across the UK to commemorate the occasion, including the ambitious plan to recruit 1,400 new bell-ringers – the number of ringers lost during the war – to allow church and other bells to ring out on November 11th, just as they did to mark the end of WWI in 1918. Nearly two years ago, young men across the UK remembered the start of the Battle of the Somme in an incredibly heartfelt way and I am certain that this year will see similar shows of respect and passion as we remember those who sacrificed so much for us all.

However, today marks a different centenary, one that is just as significant and whilst not many of us would argue to know much about the passing of the Representation of People Act 1918 per se, I’m certain we all understand what that Act achieved – allowing women to finally have the vote. This Act was an important first step in the journey to equality for men and women and whilst there continued to be a number of restrictions on which women could vote until the passing of the Equal Franchise Act in 1928, when finally all men and women over the age of 21 had the vote, 1918 was the recognition of the hard work of the Suffrage movement, both Suffragettes and Suffragists, and the irreplaceable contribution of women during the years of WWI.

G spent time studying the Suffrage movement during her History lessons last year at school and I was delighted to discover that she was asked to research and learn more about this fascinating era of UK History. She had to explore the arguments for and against the actions of the two groups fighting for women’s votes: the Suffragettes, those who were prepared to fight hard, sometimes through violent demonstration; and the Suffragists, a group who fought just as hard but through using non-violent tactics; and then consider which group she would more likely have joined.

I cannot stress how important I think it is for girls today to be taught about the battles fought, both figuratively and literally, to achieve women’s votes. Since I turned 18, I have actively made an effort to vote in every local and national election and will encourage G to do the same when she reaches her majority. It is a 100 years since women won the vote in the UK, which may seem like a part of the dim and distant part to my 14-year-old and her friends, but the reality is that, even during their lifetime, there have been other women fighting this battle and the women of Saudi Arabia only achieved that right just 7 short years ago.

Reaching our majority

Another year on and we’ve finally reached our majority! 18 years of marriage, which according to this website, requires a trip to either China or Denmark. We enjoyed our nod to the first when we ate dinner in Chinatown, London on Saturday evening, but today will just be about a meal at home once the children are in bed, a glass of something cold and probably not too much else!

Happy Anniversary Mike – love you always