Category Archives: Family

#NEAW2018: C is for Change

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.

Advertisements

#NEAW2018: U is for Unite

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

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

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 Gormleys 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!

“War is over if you want it”

In planning our Easter adventure around Scotland, we quickly realised that our desire to visit all the places we were hoping to go would create what can only be described as a whistle-stop tour of the country. We could easily have chosen a half-dozen more places that one of the other of us, or perhaps even both, wanted to see and I can already foresee more visits North being squeezed into our future travel plans. For each location we settled on, we decided to stay just 2 night only, giving us one full day to explore where we were and so asked G and M to do a little research about different museums they wanted to visit or landmarks they’d like to see. There were no promises that we’d manage to do any or all of these, but I was keen for them to be as excited about our travels as we were.

The first leg of our journey took us to Liverpool, famously home to The Beatles as well as Premier League football clubs, the Grand National and the White Star Shipping Line, owners of the ill-fated Titanic. Mike and I spent a long weekend in the city for our 15th wedding anniversary a couple of years ago and so had already determined that we wanted to take the children to “The Beatles Story” exhibition at Albert Dock. A lengthy Google search by G and M led to the discovery of “Western Approaches”, a museum delving into Liverpool’s role during WW2. As both children have been studying aspects of the First and Second World Wars at school, they quickly decided that this was somewhere they absolutely wanted to go and Mike and I were more than happy to agree.

After a quick breakfast in our hotel room, something we usually choose to do as it ensures we have safe cereal and milk for both children whilst we’re away from home, we headed off on foot to our first destination, “The Beatles Story” exhibition. This marvellous museum is based at the iconic Albert Dock and charts the history of The Beatles, starting with childhood stories and finishing with all that the individual members of the band have gone on in their solo careers. As always, we all opted for the audio guides, something that M loves to do as he listens to the stories unfold as he traipses round the exhibits and touring at our own paces, moved from room to room. I’ll be honest and say that M didn’t manage to stay engaged for the entire exhibit, but he did reasonably well and by the time he’d had enough, I was ready to remove my headphones and wander the remaining spaces with him. Both children enjoyed the museum, especially the areas displaying memorabilia and costumes and picked up some interesting facts about one of our favourite bands. They also loved walking around Albert Dock and exploring the multitude of small shops that are there.

From Albert Dock, we walked back to Liverpool One, where we found a fantastic allergy-friendly diner for lunch. I will leave reviewing our dining choices until my next blog, but I will tease you with the tidbit that this lunch-time destination was easily one of the best we went to and M was desperate to go back again if only time had allowed. After a late lunch, it was time to go on to the children’s choice of the Western Approaches War museum. Hidden in a fairly unprepossessing building, I cannot begin to tell you just how fantastic this small museum turned out to be. Based in the wartime bunker beneath Derby House, Western Approaches takes you on a journey explaining just how the Battle of the Atlantic was won by the Allied Forces. The staff were incredibly knowledgable and helpful and took a keen interest in explaining what we were going to see to both children before we entered. G had just been learning about the Battle of the Atlantic at school and so it seemed a particularly apt museum choice, especially when she was told that young women, not much older than her, would have been working down there during the war years.

What particularly appealed to M whilst we were here was the Treasure Hunt that saw him toting a gas mask case filled with instructions, code-breaking equipment, notepads and a mini UV light around with him. Some of the clues were easier to crack than others and both children had a great time trying to find where they were hidden and working out where they needed to look next. Most of the exhibits were hands on, which is great for children of all ages and both M and G quickly spotted the link to Bletchley Park and the code-breaking work that went on there during WW2. My favourite bit came right at the end of our visit, when we reached the street scene set up, including unexploded bomb and the tiny canteen asking for 2d for a cup of tea or coffee. I happily paid my 2p over, plus a little bit more to support their cause, and sat down to enjoy it whilst we all played one of the period board games that was available. It was a fantastic way to spend a couple of hours on a fairly grey and miserable afternoon and I would highly recommend this museum to anyone who’s looking for something to do in Liverpool.

The only disappointment with our visit was that we hadn’t realised that the Terracotta Warriors are currently on display at the World Museum, something that Mike and I would both love to take the children to see. We were lucky enough to see them in-situ in Xian when we visited China back in 2001 and want to take advantage of this opportunity to share this fascinating exhibit with G and M. Our plan is to book tickets for a visit there over the summer and have another long weekend in Liverpool, perhaps experiencing some of the other things we didn’t manage to do on this trip.

Easter holidays

There’s only one thing that beats going on holiday for me and that’s planning for the next one…or two…or several. After our hugely successful Greek jaunt last summer, our attentions had naturally turned to our travels for 2018 and beyond: or perhaps, more honest, my attention was drawn to the “beyond”, whilst Mike and the kids were happy to just think about the next 12 months! With G heading into the start of 2 years studying for her GCSEs, which will kick off our family’s long haul navigation through the wonderful world of exams for both children, our holiday choices will need to accommodate school deadlines and revision demands as well as giving them, and us, the chance to kick back and relax away from it all.

We have long been considering a much overdue trip back to Canada to visit our family and friends, and have decided that 2018 is the year to do it. We are still ironing out the finer details for the trip – including which time of year is going to work best for us to go allowing for term dates, weather and flight availability – but with that big holiday tentatively pencilled into our calendars, our attention turned to fitting on some other smaller adventures throughout the rest of the year. Our starting point was a holiday in Scotland, somewhere neither child had been to before as well as a place we knew we’d be able to cater for M with relative ease and minimum stress. Having heard that G didn’t have a place on this year’s South Siblings OTW camp, we decided on 10 days during the Easter holiday and set to planning with relish once Christmas was out of the way.

Unfortunately, the bout of Aussie ‘flu that hit Mike and M in January combined with the tough couple of months that followed, meant that March rolled around with, much to my discomfort, nothing booked and only a very basic sketch of our proposed route through the North of England and Scotland. We decided to involve G and M in as much as the planning as they wanted and had been informed that the key places to visit on our approximately 1,800 miles car trip included Liverpool, Glasgow, Inverness, Edinburgh and Scarborough (don’t ask!). Armed with our calendar, a list of activities in each location, a reliable internet connection to facilitate mileage, travel time and hotel bookings in each of our destinations and a glass or two of wine, Mike and I sat down one night and booked what rapidly became known as our “Premier Inn” tour of Scotland.

As ever with our family, our plans to set off early to our first stop of Liverpool didn’t quite go according to plan, when Mike managed to enthusiastically floss a filling out of one of M’s baby teeth the weekend before our start date. It was only once the emergency appointment at our dentist was complete that we finally found ourselves on our way. Despite the late start, the Wednesday afternoon traffic wasn’t too bad, albeit the week before the Easter weekend, and we arrived in Liverpool by dinner time, ready to immerse ourselves in all things Beatles before carrying on in a more Northerly direction.

#NationalSiblingsDay

I don’t have one, whilst Mike’s the youngest of three. At the end of the day, though they might fight like cat and dog at times, the one thing I can confidently depend on being true is that, no matter what else happens, G and M always have each other’s back. They can criticise the other to their heart’s content, but woe betide anyone who thinks to express their opinion of one sibling in the other’s hearing. Even when one is trouble at home, the other can often be found defending what happened (she only did it because of something I said), offering cuddles to calm down or rushing off to find Cat (for M) or the replacement blanket (for G). Today is #NationalSiblingsDay, so I thought it only fitting to recognise the infallible bond between my 2.

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!

Hitting 12

It may be International Women’s Day, Jedi Day (thanks to Mark Hamill’s Hollywood star) and the eve of National Science week, but in our household, there’s only 1 thing that March 8th marks and that’s young Master M’s birthday. Except this year he’s not quite so young, having hit 12 years already – and just how did that happen? – and I can’t believe that this will be the last year that we only have 1 teenager in our household.

Today has been a great day at school for my youngest and despite a reluctant start to the day, he came bouncing back to the car at 3.30pm, keen to share everything that had been good about it. It’s not been the celebration that perhaps it might have been given the topsy-turvy nature of the last 2 weeks for our family, but it will be the celebration that we want it to be.

Happy 12th to my beautiful, strong, sensitive boy; who pushes the boundaries at every step, but has a true heart of gold xxx

Daddy’s new toy

Somehow, and I’m not entirely certain how, we have limped our way through what has proved to be a tough 5-weeks and finally Term 3 has drawn to a close and half-term has arrived. M’s health was hit hard when he came down with Aussie ‘flu just into the New Year and the term has been turned topsy-turvy as he’s struggled with high temperatures, heavy head colds, aching joints, lethargy and low energy levels. He’s also been trying to cope with unbelievable bouts of insomnia since the end of last term, a problem that has taken its toll not only on M, but the rest of the household too as Mike and I have juggled home and work as well as the impact of the serial bed-hopping that has become an almost nightly occurrence. Except on Wednesdays. I’m not yet sure what makes Wednesdays so special, but over the last couple of weeks, M has achieved something that has been such a rare event that I can pretty much count the number of times it has happened in his lifetime on the fingers of one hand. In bed – his bed – fast asleep and then nearly 10 blissful hours of interrupted sleep for the rest of us!

One of the highlights of half-term has been opportunity to finally try out the new toy that Mike had for Christmas. A stove-top smoker. Following the discovery of what quickly became a new favourite with M when we were in Greece last summer, Mike has been exploring whether there was any way to replicate the delicate flavours of this smoked chicken at home. He talked a few times about the possibility of buying a smoker, but as so often happens in our household, the chat didn’t lead anyway and eventually the idea faded away into seeming obscurity. However, whilst all thoughts of a smoker had disappeared from Mike’s head, it had taken up permanent residence in my mind and I was undertaking some research of my own.

Finding the perfect Christmas present for my other half is always a challenge, particularly as his birthday is just 2 months before, but waiting until December gave me enough time to read around the subject and pick out what I hoped would be the perfect choice. It came as a complete surprise on Christmas day and a present that both Mike and M were looking forward to experimenting with in the New Year. Sadly ‘flu got in the way of any such trials in January, but Mike being at home with the children for half-term gave them the perfect opportunity to give the smoker and a variety of wood chips a whirl.

By the end of the week, it turns out that Mike’s worked hard to see just what flavours he can produce and M feels that there’s still some work to be done to perfect the chicken to his exacting standards. It appears it’s all too easy to over-smoke the meat and end up with a bitter dinner, rather than the aromatic flavours we were hoping to find. M has suggested adding lemon and herbs to help flavour the chicken and I’ve no doubt that Mike’s new toy will be a source of much fun and experimentation over the coming months.