Category Archives: Family

Quiet week…?

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I wish!

I thought this week would be quiet as G is away at pony camp for her school’s enrichment week and M is busy doing “activity adventures” for his. I thought that would give me a week to catch up on writing some blog posts, finish the tales of our trip to Scotland over Easter and sort and store the photos from that said-same trip.

And then work just exploded and deadlines needed to be met – and still do to be fair – and life carried on with little consideration for my plans for the week.

Ah well, maybe that quiet week is just around the next corner?

The Hunt for Nessie…and other adventures

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Inverness was the location for yet another flying visit on our whistle-stop tour of Scotland, but was one we all enjoyed hugely and it even saw both children expressing a surprising yearning to move North as they gazed at properties in the estate agents’ windows. Inverness itself was not the primary focus of our visit, but rather nearby Loch Ness, which M insisted was a place we absolutely couldn’t even consider missing out when we were practically passing right by the proverbial doorstep. Our time spent there was tight, but we managed to squeeze in everything we wanted to do and even found an unexpected bonus before we left again to travel on to our next destination.

It was whilst we were in Inverness that the snow that had been dogging our every step finally caught up with us, but it didn’t spoil our morning’s trip to Culloden, the site of the final battle of the Jacobite rising in 1745. Despite M’s reluctant traipse around the visitor centre itself, the rest of us enjoyed the interactive displays which carefully talked the visitor through both sides of the story and depicted the events that led to the final battle. It is not a part of British history that either Mike or the children really knew at all and I enjoyed brushing up on my rather scant knowledge too. Mike and G took their time reading the displays, whilst M and I moved at his usual faster pace as I desperately tried to cut through all the facts to capture his interest in the story itself.

Being the Easter holidays, there were some great children-friendly activities available for younger visitors and they appealed to both M and G, who were fascinated to learn more about the weapons used during the battle as well as glimpsing a small insight into the household essentials of the time. We even participated in the family orientated quiz that was held in the last exhibition space and M proved once again that although he moves fast, he’s able to pick up a surprising amount of information in a short space of time and was able to answer with ease questions that left the rest of our side scratching our heads. Once we had finished exploring all that the museum had to offer on the inside, it was time to wrap up warm and venture out onto the snowy battlefield itself. Despite the grey skies and intermittent snowfall, we managed to make our way all around the site, although the return journey back to the warmth was at speed. Neither child had been particularly interested in visiting Culloden in the first place, so to make a full morning of it counted as a real success in our book!

We enjoyed a picnic lunch in the car as we travelled from Culloden to Loch Ness itself and stopped en route to take a few snaps of the beautiful scenery we were passing. Our destination for the afternoon was the Loch Ness Centre and Exhibition, which talked us through the history of Nessie and all of the scientific (and otherwise) investigations into whether she really exists. The children had the chance to investigate the photographs and evidence themselves and drew their own conclusions about whether the Loch Ness monster really exists. It was a fun and interesting exhibition and I particularly enjoyed the last room, which talked about other incidents and discoveries in the Loch Ness area, rather than focus on Nessie herself. A quick jaunt through the gift shop heralded the end of our day out and we headed back to the hotel for some much-needed sleep before moving on once again for the final destination on our tour of Scotland.

Scottish Engineering

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Looking back now, 2 months on since our Scottish adventures, I can’t believe just how much we did in what really was so short a time. Having “done” Glasgow, our next major destination was through the beautiful, snow-tipped Cairngorms to Inverness, but not before we had stopped off to experience 2 unmissable sights – the Falkirk Wheel and the Kelpies. When we first started planning our trip to Scotland, so many family members and friends told us that we absolutely had to visit the Falkirk Wheel and warned us to pre-book our tickets to make sure that we didn’t miss out that we both took heed and booked our Easter Sunday day out.

The engineering wizardry of the wheel, which was the world’s first rotating boat lift when it was opened in 2002 to link the Forth & Clyde and Union canals, had M absolutely hooked from the moment we showed him the website and he couldn’t wait to actually experience it in person. The transition from the lower canal to the higher one (and back again) is unbelievably smooth and you hardly realise you are moving 35 metres into the air on a remarkable man-made structure, planned in Lego and powered by the energy required to boil just 8 kettles for tea. Without a doubt, it is an impressive sight to observe and having done our “turn” on it, we settled in at the cafe for a light allergy-friendly lunch accompanied by a side order of a great view of the wheel doing its thing as we ate. 

The tour guide on our boat gave us so many facts and figures about the Wheel that it seemed almost impossible for the children to absorb many of them and yet, even now, they still remember the ones that particularly fascinated them whilst we were there. As we looked out from the top canal towards the Firth of Forth, we heard about the Kelpies just a short drive away and knew without a shadow of a doubt that we absolutely couldn’t head further north until we had taken our horse-mad girlie to see these amazing structures.

Built in a phenomenally short space of time in 2013 to form a gateway to the eastern entrance to the Forth & Clyde canal, this monument encapsulates the mythical beauty of the water spirits of Scottish folklore whilst forming a fitting tribute to the horse-powered heritage of Scottish industry. These 30-metres high horse heads are simply breathtaking to see and although we didn’t have time to enjoy the Easter sunshine with a walk through the Helix parkland project, we all relished the opportunity to stretch our legs and even perfect some dance steps on the way to the structures. All in all, it was a perfect way to spend a peaceful Easter Sunday with family and one that perfectly combined so many varied aspects of the Scotland we were slowly discovering each day.

#NEAW2018: E is for Engage

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May 26: E is for Engage

It’s a late post tonight, much later that I would have hoped, but I’ve been busy helping out with an anniversary celebration for the charity I’m now working for. It’s been a long day, but a fab one and I’m delighted to now be able to bring you my final post for NEAW.

This week has been, as I expected, a quiet week when it’s come to raising awareness of EGID. There were no big fundraising plans, no local radio interview and no article in our local paper. The children didn’t present anything at school this year and I didn’t plait pink ribbon into G’s hair or attach awareness ribbons to their school bags. Mike and I have stuck to our commitment to eat like M for the whole week and that has certainly led to a lot of conversations with my new work colleagues about M’s diagnosis…and how to pronounce “Eosinophilic”!

I’ve written a blog post every day this week which have been read and shared on by you all and whilst the daily posts will finish now this week has come to an end, I will continue to post an insight and an image on my social media channels right up to the end of month. Life might get quieter on the EGID front for most of you, but please remember that it will continue to be a permanent and unavoidable fixture in M’s everyday.

Thank you for engaging with us this week; for walking part of our journey alongside us and all I ask is that you keep helping us fight the battle to raise awareness of it.

#NEAW2018: T is for Thank

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May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

#NEAW2018: A is for Awareness

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May 24: A is for Awareness

Today is all about raising awareness for EGID. At home we’ve been working on putting together a presentation for the end of June, when G and M will be introducing Over The Wall at their performing arts’ school’s end of year fundraising concert. We are, as so many others around the world, huge fans of the 2017 smash hit and all round wonderful film “The Greatest Showman” and the song “This is Me” had a particular resonance for the whole family. M and I chose this track to be the backing track for their OTW Powerpoint presentation and I decided to adapt what I’d already made for this year’s NEAW to raise more awareness.

#NEAW2018: C is for Change

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May 23: C is for Change

The dictionary defines change as “to make or become different” or “an act or process through which something becomes different“, but what does that really mean in the context of raising awareness about a rare disease?

There are so many things that need changing when it comes to EGID, some of which we can actively work towards achieving and others which can be nothing more than a pipedream at the moment. Educating others about what EGID is and how it affects those diagnosed with it will hopefully bring about a change in attitude in both the community surrounding M and the wider medical profession. Even though this often feels like an uphill battle, it is an achievable target and something we should all keep working towards, chipping away slowly at the seemingly indestructible walls that surround EGID as a valid diagnosis. Those changes in attitude will help M feel less isolated by his health problems and more confident in being the unique individual he is despite his EGID and not because of it.

The 12-year road we’ve travelled since M was born has seen many changes and there is no question that there will be many more to be traversed as he grows towards adulthood. He’s gone from an active, can-eat-everything toddler, through a stage of being a tube-fed child taking 13 medicines multiple times a day to now being a tween eating 9 foods on a regular basis, taking 4 medicines plus a multi-vitamin each day and thriving. The next few years of teenagedom will undoubtedly bring a myriad of changes to be navigated, mostly thanks to those pesky hormones, and which will hit us in ways we can’t even begin to imagine. Who knows how treatments and medical breakthroughs will change as he gets older and the best change we can hope for is that his doctors will find a way to improve his quality of life beyond our wildest expectations.

What are the changes that M would most love to see happen?

  • To be eating as “normally” as possible. What he wants when he wants and with no repercussions at all
  • To be able to go without all of his medicines, especially the E028 drink, and not worry that a reaction could be just around the corner
  • And to not feel different, or alone, or set apart from his friends because of a condition that he can’t predict or control, but can just manage as best he can

What I want is not really a change at all. I want him and G to remember that they are able to live life to its fullest, loving and embracing every moment of it and grasping every opportunity that comes their way and making the most of them all.

#NEAW2018: U is for Unite

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May 22: U is for Unite

Over the years, our primary focus for “unite” has been on spending the week, or a part thereof, “Eating like M“. Mike and I are embracing it fully again this year, much to M’s delight, but I have to wonder whether following his restricted diet for 7 days really does enough to show him that we’re standing in unity alongside him. A natural consequence of our choice is that those we work and spend time with during this week will inevitably ask questions, which obviously gives us both a great opportunity to talk about EGID and start to educate the uninitiated, but I keep returning to the question of whether M truly feels a benefit from us standing shoulder to shoulder with him for such a short time.

Of course, the truth is that, for us, every day living with EGID, even though we are not living with the diagnosis and reality of it ourselves, is a day spent supporting M through what has been some of the toughest times he’s had to face in his 12 years. We have lived through and survived the most difficult challenges, but we are still not really living in unison with him. My 30+ years of living with my own chronic illness, Type 1 diabetes, means that I do perhaps have more of an idea of the experiences and angst that he faces each day than others and I know that that truth has brought M some comfort in his darkest moments. I can’t make EGID disappear, or allow him to eat completely normally once again – or, at least, not without some pretty catastrophic reactions that would take their toll and require a huge amount of time to recover from – but I can offer a level of understanding and empathy to him, along with an ever-ready cuddle, kiss and encouraging words from Mum, which may or may not be gratefully received depending on the occasion.

This week, social media, and Facebook in particular, is swamped with the CURED banner for NEAW, which promotes worldwide unity in the EGID community, with all of those living with EGID holding hands and pulling together to seek a cure. It is an image that has resonated with me, especially given the ongoing tumultuous relationship between EGID and the medical profession here in the UK.  Despite M’s objections to the word CURED (which actually stands for the Campaign Urging Research for Eosinophilic Disease) because, as he rightly points out, “…there isn’t a cure yet for EGID and this makes it seem as if there is…“, he too is a fan of the sense of inclusion rather than isolation that is reflected in the words. The realisation that EGID affects others just like him across the world is sinking in and we all find some comfort in the truth that other countries are investing in the area of gastro research, which includes seeking a deeper understanding about EGID and how it works.

Whether its eating like M this week, or sharing the same meals with him at different times throughout the year; supporting M when life isn’t going as smoothly as it could, or cheering him on when he’s talking EGID to those around him; or actively helping both him and G when they’re fundraising for the charities that have worked tirelessly to support them over the years, all of it is standing in unison with M during NEAW and for the rest of the year. Because unity is not just for a day or a week or even a year, but it’s for a lifetime and it’s a commitment I’m willing to make to the EGID community, not just to him.

The question is, are you?

Glorious Glasgow

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When we first started planning our holiday in Scotland, I had a quick internet search to try to uncover what there would be to do and see for the few days we were in Glasgow. Disappointed by my search results, I turned to my Mum who has visited there in the past to see if she had any recommendations to make, but her comments were equally sparse, though perhaps more understandably given she had been there for the Commonwealth Games in 2014. Having now spent less than 48 hours in this city, I can honestly say that it’s somewhere that I would like to visit again and take the time to go to some of the hidden gems that we didn’t discover until this trip. There were, however, 2 things that we all agreed were a “must-do” whilst we were there – the hop-on, hop-off bus tour and the Hard Rock Café!

Our day started out a little less successfully than we’d have liked. M had munched his way through the cereal I had brought and was in desperate need of a new box to supplement his banana and milk. It was cold and wet, though we had planned for the likelihood of wintery weather conditions in Scotland in late March/early April so were well equipped with hats, gloves and coats; and even worse, as far as the children were concerned, we had to do some walking before we could join the bus tour around the city! Our hotel was conveniently located opposite the SSE Hydro and SEC Centre, both of which look incredibly impressive when seen all lit up from across the river at night. Unfortunately, we didn’t have much luck in finding the Nestle GoFree rice pops that are M’s current favourite breakfast cereal, though we did stumble across a great little cafe where we were able to pick up some freshly made gluten-free sandwiches for lunch.

With Mike fully laden down with sandwiches, soft drinks and other suitable snacks, we finally made it to a bus stop, bought our tickets and settled down on the next bus for the City Sightseeing tour of Glasgow. M absolutely loves taking these bus tours whenever we’re visiting somewhere new and it really is a great way to learn a little more about where we are as well as being a helpful way of planning the rest of our time in the city. Our plan for Glasgow was to complete around half of the bus tour before we reached our next destination and our stop for lunch, and for the afternoon. Despite our pitiful attempts to find something to do in Glasgow before we arrived, the success story of our time there was the Riverside Museum – and that discovery was thanks to the tenacity and determination of our youngest.

M had taken very seriously the responsibility for finding things to do or visit or see in every place we visited and on the night of our arrival, spent some time before bed scouring Google to find somewhere to go. He had stumbled across the Riverside Museum and instantly announced that he was keen to go there, confident that we would all enjoy what it had to offer. I’ll be honest to say that a transport museum didn’t initially sit at the top of my list of things to do, not least because I’ve been involved in setting up a similar museum over the last 18 months, but I will absolutely take my hat off to him as it was an absolute success. We spent a fantastic afternoon in this gem of a museum, that had more cars, cycles, boats, planes, trains and motorbikes squeezed into the space than you can even begin to imagine. We have visited very many museums over the years, but this exhibition is truly incredible and all 4 of us would highly recommend it to anyone planning a visit to Glasgow in the future.

Our time at Riverside drew to an end and we caught the penultimate bus back into the centre of Glasgow, finishing the tour we had started a few hours earlier. The final destination for our day was the Hard Rock Cafe and it was just a short walk from the final bus stop to the restaurant for our last dinner in Glasgow. We didn’t spend a lot of time in this glorious city and there are definitely things I wish we had done whilst we were there. Of course, the answer to that dilemma is an easy one – it just requires another visit to Glasgow to be planned!

From Gormley to Glasgow via Gretna

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With our brief stint in Liverpool having come to an end, we set off to more Northern climes, planning to cross the border at where else but the infamous Gretna. Before setting off from our Liverpool base, we nipped into the local M&S to pick up a selection from their incredible GF/DF range as well as some other bits and pieces for us to enjoy as a packed lunch whilst we were en route. There was just one more place for us to visit before our journey could properly begin as I insisted on a detour to Crosby Beach, home to Antony Gormley’s incredible art installation, Another Place. Mike and I had visited it during our previous trip, on a grey, wet and fairly miserable December afternoon and the weather wasn’t really all that difference on our second visit this March. The children found the statues themselves quite disconcerting and M wasn’t keen to get too up close and personal with any of them after he’d examined the first one. Whilst Mike and G wandered towards the shoreline to see the furthest one that was still accessible on foot, M and I instead stood back on the boardwalk to see how many we could spot out in the depths of the River Mersey. It is an impressive sight and was a detour I was glad we had taken.

 

Unfortunately, the delays from both the shopping trip and our visit to the beach plus a late morning start meant that we hit traffic as we joined the M6 Northbound and we quickly found ourselves in the hell of bank holiday traffic and lengthy queues. Thankfully M slept his way through the worst of them and by the time he woke up, we had headed off-piste and were relying on my map-reading skills and the GPS on Mike’s phone to find short-cuts along A roads and through small towns to try to circumvent the M6 nightmare. We eventually found ourselves heading towards the Scottish border with a fast-approaching teatime and decided to stop in Gretna to have some food before continuing our journey to the next planned stop on our travels, Glasgow.

 

We spotted the ever allergy-friendly Pizza Express at the Gretna outlet village and instantly decided it was the easiest place to stop as we know they can cater well for both children. The one thing that made me chuckle when choosing my dinner was spotting the Irn-bru – often described as Scotland’s second national drink – available on the drinks menu. As I said to Mike, “You know you’re in Scotland when…!” After an enjoyable and much-needed meal, during which I had explained the historical relevance of Gretna Green for young English couples looking to elope, we set off once again to complete the 90 miles or so remaining to reach our final destination. We arrived at our hotel on the banks of the River Clyde in the dark and were just about able to make our weary way to our room before bedding down for the night. It seems that endless queues of traffic can really take it out of you!