Tag Archives: Social media

Allergy Blog Awards UK 2017

Why not write a blog post about your success?” they said.

“Yes, why not?” I replied.

Ask your readers, family, friends, colleagues, social media followers to vote for you

and I nodded my head in agreement.

They might even promote you through their own social media channels!

“Fantastic!” I thought.

And then came the task of sitting down and putting pen to paper and doing that very un-British thing of talking about my success to, well you know, to other people.

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I am incredibly flattered and proud to have been nominated in 2 of this year’s Allergy Blog Awards UK‘s categories, the Parent Allergy Blog and Allergy Blog of the Year and would like to thank anyone who took the time and effort to put my blog forward for these awards. I am up against some wonderful other bloggers who have become friends over the last few years and they are definitely strong contenders for these awards, but I’m hoping that with the help and support of my readers, and maybe even your friends, I might make the shortlist for one category at the very least.

I started my blog to share the highs and lows of life with EGID and multiple allergies, not least the road we travelled to reach M’s diagnosis. I didn’t want any other parent to feel as isolated as Mike and I did when we were trying to convince the medics that there was something wrong as well as letting other families know that they really aren’t on their own with their battles. Since my first post in 2013, my blog has morphed into more than just a commentary on a child with a chronic illness, but looks at all aspects of family life from birthdays and days out to schooling and hospital visits. Without a doubt, I will always find the time to keep writing because each and every day brings a new challenge to overcome or achievement to celebrate and it gives me a form of release that helps maintain a level of sanity at all times.

So what can you do? – and yes this really is the trickiest bit to write. You could click on this link here and cast your vote in either of the categories I’ve mentioned above. Just scroll through the lists until you find 7yearstodiagnosis and click to make your selection. You could also share this through your social media channels or email contacts to ask friends to add their votes too. I really appreciate each and every vote cast between now and 30th November 2016, and will hopefully be able to share whether I have successfully made it through to the next stage or not.

thanks

 

Kids’ eye view of Lisbon

One of the attractions that M was keen to visit was the Oceanário de Lisboa, opened in 1998 as part of the last twentieth century World exhibition and which is the largest indoor aquarium in Europe. Having explored Old Lisbon on our first day, we were all happy to change pace a little and eventually made our way there via the beautiful Praça do Comércio and a necessary decision to hail a Tuk-Tuk, when our hop-on, hop-off bus couldn’t be spotted except as a dim mirage in the distance. By the time we arrived the main queue was dishearteningly long, but thanks to the helpful advice of our friendly Tuk-Tuk driver, IMG_0943[1]we instead joined the one for the ticketing machines and found ourselves moving through it fairly rapidly and were into the aquarium itself within little more than 30 minutes of our arrival.

We were directed to begin our visit with the temporary display before we cannily stopped for a relatively early lunch, which meant we managed to dodge any lengthy waits in the cafeteria. Both children were eager to head into the main and permanent exhibit, lured by the promise of manta rays and rainforests and we spent a glorious afternoon there. This was a truly amazing exhibit that took us on a 2-level tour around the world and around the incredibly impressive huge tank that formed the centrepiece of the aquarium. This tank was filled with all manner of fish and could be easily viewed from just about every angle as we made our way around the building. IMG_0955[1]G and M spent their time photographing or filming what they could see, racing between displays and tanks, and excitedly sharing the tidbits of information they had picked up along the way. From penguins to puffins, jellyfish to sunfish and sea otters to sharks, the kids got to see them all and were totally fascinated the entire time we were there.

Our second child-friendly stop was spotted as we left the Oceanário and meandered our way in the glorious sunshine to where we had been reliably informed we could catch that ever-elusive tour bus back to the main centre. M had actually already identified it as a possible place of interest, but it wasn’t until breakfast time of our final morning that we decided to pay it a visit. After an unsuccessful lengthy wait for the renowned Tram 28, Mike, the children and I decided to abandon the rest of our group as they continued to queue for it and instead headed off to the Pavilhão do Conhecimento or Knowledge Pavillion. IMG_1009[1]We have previously had great experiences visiting other interactive science museums such as the Science Museum London, @Bristol and the Ontario Science Centre in Toronto and G and M have loved every moment of them. I was confident that we would have similar success in Lisbon and couldn’t wait to see what experiments and activities were on offer there.

It was absolutely another day that was more than well worth the very reasonable entrance fee and we explored every inch of the place thoroughly. We started downstairs in the Viral exhibition, which looked at what contagion is and how it works, not just from a bacteria point of view, but also looking at the current spread of the social media trend. G and M loved the interactive displays from capturing and identifying different germs to seeing if watching others yawn can cause you to do the same , as well as whether they could incite a virtual audience to copy their clapping, dance moves and Mexican wave. IMG_0980[1]We paused for a quick lunch, which included a plate of rice for M and some gluten-free chips for G in the on-site restaurant before heading upstairs to tackle everything else the museum had to offer. M was particularly enthralled by the prospect of riding a bike across a high-wire suspended above the main floor of the building and successfully rode there and back, though G was a little more cautious and couldn’t quite brave it. Our afternoon was packed full of activity for us all and I was especially appreciative of the strategically placed armchairs spotted throughout the exhibits for those of us who didn’t want to be on the go the whole time! We filled the time we had there and managed to do most of the exhibits, though not quite all of them. It was a fun afternoon for the whole family and I wouldn’t hesitate to take G and M back if we had the chance.

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The Italian Job

Sometimes you just need some time off; a week away from it all; an opportunity to have a break from the everyday, to just rest and relax and be. The thing is that that is hard enough to achieve when you’re a parent and near on impossible when you’re a special needs parent. The stress of leaving your chronically ill child with someone else, even when accompanied by a small novel’s worth of detailed instructions about what to do in every possible and conceivable situation, threatens to overwhelm and can seemingly be insurmountable for a day or two, let alone more than that. Mike and I are lucky that my Mum lives close enough to give us some nights off during school holidays, but those days usually mean longer hours at work for me as I attempt to make up time missed for hospital appointments with M and include only the occasional trip out to the cinema or for dinner somewhere where we aren’t tied to the essentials of chicken, rice and cucumber of our everyday menus.

Last December, in fact the day before M was admitted to GOSH for those disastrous food challenges, I received a Facebook message out of the blue from one of my fellow FABED Mums:

“Is that you that has won a trip to Italy with schar? Saw Twitter post? Congratulations x”

and have to confess that at that point I had absolutely no idea what she was talking about! A quick unscheduled peek at my Twitter feed and a long look at my e-mails later, I was stunned to learn that she was indeed right and I had won a 4-night stay in Italy thanks to gluten-free producer Dr Schar and the Allergy and Free from Show, Liverpool. It has taken a little while to put all the necessary pieces in place, but finally, last week, 6 full months since I first received that message, Mike and I left G and M in my Mum’s more than capable hands and jetted off for a much-needed break from it all.

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Getting to that point did take some effort and there were last-minute wobbles before we finally left. It took an unbelievable amount of time to confirm the dates for our hotel stay due to the relaxed attitude of the Italian hotel staff and our flights were researched and scheduled by me once I knew the preferred airports for us to travel to and from. Two nights before we left, Mike questioned whether we really could go abroad given M’s current ill-health, but we trust my Mum implicitly and knew we needed to take some time for ourselves. That’s something that my Mum supported fully as she knows that reality as well as we do due to my T1D diagnosis at age 9. The truth is that you should never under-estimate the impact of a sick child on a marriage: the focus naturally shifts from each other to that child and home life inevitably revolves around what they need in every waking moment. In our household, those needs have not just been during the day, but at nighttime too as M’s sleep issues have been an ongoing problem that we continue to struggle with and every time we seem to be making some headway with it, something happens to set us back to where we were before. His broken leg has been no exception and has added to that regression as it has seen us playing musical beds with G moving to M’s cabin bed and Mike to G’s room to give M the comfort he needed to enable him to sleep in the weeks following the accident. The physical strain of looking after M with his broken leg has taken its toll on me, leaving me exhausted and Mike and I have had little time to spend with each other without interruption.

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Our plane is the one on the left, which looked tiny when seen next to the Easyjet one also waiting for passengers

Last Monday passed in something of a blur and proved to be a long day of travelling with more than its fair share of minor hiccups along the way, just to keep us on our toes. We were up at 3.30am to reach our regional airport before a 6.30am flight to Munich, followed by a couple of hours waiting at the airport before our shuttle bus arrived. Then there was the 30 minutes of pure stress as we failed to connect with the shuttle bus due to the unclear instructions as to where to wait that were written on the booking form and my tears of panic as Mike desperately tried to find a helpful German airport worker to help him communicate with the bus company, before all was finally resolved and the driver turned around to pick us up. IMG_0522[1]The following 4.5 hours in a minibus without functioning air-conditioning and unable to communicate with said driver due to my lack of German and his lack of English was interesting, though we drove through some amazing countryside and realised that 4 countries in 1 day (UK, Germany, Austria and Italy) was a record even for us. We finally reached Lana, our Italian destination, only to discover that the cable car to the hotel – the only way to reach it – had broken down and we were destined to wait for an indeterminate amount of time as the statement that “..it might be 5 minutes, it could be 30…” was accompanied by an unconcerned shrug. But, we got there in the end and, having reached what is an amazing resort, it was, without a doubt, all worth it in the end.

NEAW 2016 – #MoreThanFoodAllergies

The headline in our local paper for this year's #NEAW focuses once again on the allergies

The headline in our local paper for this year’s #NEAW focuses once again on the allergies

I share a frustration with Michelle, one of the lovely co-founders of the FABED, that all too often people living outside of the EGID world get drawn into the food allergies side of this illness and don’t really understand that that is just a small part of a much bigger picture. I can understand why the focus so often falls on it as it’s the bit that people think they understand and can relate to the most. After all, just about everyone knows someone, be it their next-door neighbour, the family down the street or Great Aunt Joan in Australia, who has an allergy. They often feel that that acquaintance, however remote, gives them an insight into what life must be like when your every waking moment is ruled by their presence and I’m all for that belief encouraging them to engage me in conversation about it. Added to that, so much of our social life revolves around food, a fact that isn’t a revelation to me as I’ve discussed it before on my blog. In the last week alone we’ve had to survive the “Second Sunday” breakfast held at our church, sweets brought into school to celebrate birthdays and M’s class cake sale to raise funds for classroom resources. We managed them all in our own way, from arriving late and avoiding the table of food in the church hall, to M’s trusty swap box, which has finally been refilled and returned to his teacher and the gentle request to the TA that the class cakes be moved to somewhere other than next to M’s stationary wheelchair for the day.

Eliminating foods from dietOf course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.

However, despite the truths above, it’s really important to get the message out there than EGID is about more than food allergies, a whole lot more. Whilst it’s common for people with EGID to have food allergies, those with allergies do not always develop EGID. At the risk of repeating myself, EGID is, as I wrote for last year’s #NEAW, about “…the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way.  The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway.  The fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to.  The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst.

It’s about getting used to these things as being normal, or not even realising they’re not.”

icebergWe’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.

EGID is about #morethanfoodallergies and that’s a message the world needs to hear.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation will make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

The 12 day countdown…

13100674_10153433365696123_5191707647482858646_nIt’s hard to believe that we’re already at the start of May, which means that in just 12 days time, it’ll also be the start of National Eosinophil Awareness Week 2016. For me, every year seems to follow the same pattern:

  • At some point in late February/early March I realise that #NEAW16 is approaching and think I probably ought to do something about it…
  • Mid-March arrives and I finally get round to discussing with M and G what they think we should do this year to raise awareness of EGID and might even make some notes…
  • April begins and I realise that time is flying past far quicker than I imagined it would and begin to mildly panic about getting started on our preparations…
  • End of April and, depending on what I’ve managed to arrange thus far, I suddenly go into full-blown melt-down and panic mode as I realise that the start date is just around the corner and absolutely nothing is ready!

This year has been even more hectic than usual and not just because of the additional efforts needed in coping with M’s broken leg and what looks to be a rather nasty flare-up of his EC as a result of it. Between the children and I, we’ve determined to make this year’s Awareness Week bigger and better than ever before, which meant starting much earlier than usual too. In the past week I’ve organised, arranged and pencilled in dates for various events and whilst some will be happening ahead of May 15th, there are others planned for the week itself. Our current plans include:

  • a stall at our local Scouts’ May Fair, raising awareness and money
  • an article in our local paper all about our plans and an update on where M is a year on since the last Awareness week
  • yet another interview on our local BBC radio station, who are willing and delighted to have me in talking all things EGID for the 3rd year in a row
  • M and G have written, illustrated, filmed and directed a brand new video for #NEAW16, which I will be posting a link to in due course
  • M is in discussions with his Headteacher and is hoping to have display boards up in the school hall or library during #NEAW16. He has also planned some lunchtime games to raise some money for Over The Wall, our chosen charity for this year, and wants to show his presentation during an assembly too
  • a stall at our local market at the end of #NEAW16, again an opportunity to get information out there about EGID as well as fundraising once again
  • Mike, G and I have all committed to “Eating like M” for the week, which is the first time that G has wanted to be fully involved and will require lots of inspirational cooking from me
  • Finally, I have committed to attempting to post a new piece of information about EGID, be that fact, photo or update, via my FB and Twitter feed throughout May – and have given fair warning that I’ll be doing 13124538_1016891105068739_2619415221843487211_nso!

Over the next few days, profile pictures across FB and Twitter will slowly turn purple as those families living with EGID around the world start to raise awareness of this chronic illness. It won’t just be me posting facts and information to share with families and friends about how it impacts on everyday life, but others will be doing it too. So, if you see a post, or a blog, or an update that particularly resonates, either from me or someone else, please share it on and help us reach another person who has perhaps never heard of EGID before.

We have decided to support Over The Wall and their serious fun camps through our fundraising this #NEAW. If you’re able to donate even a very small amount, you can follow this link to my JustGiving Page and help us to help OTW make a difference to another child with a chronic illness and their family.

Reaching out

I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. social-media-treeMy blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

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A pain scale for every season

My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

painG’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

charlie_brown_pain_scale-170452A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

legoThis third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

Signal LightAt G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.

Changing Attitudes – NEAW 2015

Last week I took part in the Diabetes blog week and looked at my changing attitude to my T1D over the past 3 decades as well as changes I hope will happen in the future.  social-media-treeMy plea for improved education about T1D vs. T2D is closely linked to my longing for increased awareness about EGID and has resulted in my efforts to bring the focus of family, friends and our local community to the subject through local media coverage and social media this week.

During a music break in my recent radio interview, the presenter asked me an interesting question: whether I’m upset when people misunderstand EGID?  We had been discussing off-air the fact that there is often recognition of the food allergies side of the illness, rather than the disease itself and whilst I understand that allergies are something easy for people to understand, I’m frustrated that that’s what gets people interested in finding out more.  I pondered his question for a while and once the session was over was able to give him my honest answer: No.  I’m not upset that people misunderstand EGID because I’m usually impressed that they know something about it. The truth is that they must have heard of EGID in the first place to be capable of misunderstanding this complex disease and therein lies the problem.  Ignorance of EGID and the unseen effects it has on individual and family alike means that those of us living with it are sadly often viewed as making it all up or wildly exaggerating the severity. That attitude can leave a family feeling very alone at a time when emotional and practical support is needed most.

 This is what today’s C is all about – Changing Attitudes.


The truth about EGID is this:  It’s not just about the food allergies, that’s the easy bit to understand and, in many ways, the easiest bit to live with.  It’s about much, much more than that.  It’s about the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way.  The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway.  legoThe fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to.  The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst and you’re familiar with just about every pain chart created in the history of man.

It’s about getting used to these things as being normal, or not even realising they’re not. 

And it affects the whole family, not just the one with the diagnosis.  The endless merry-go-round of numerous hospital appointments, medicines to be taken and food to be cooked safely, avoiding cross-contamination at all costs is exhausting.  The keeping of meticulous daily records of food eaten and symptoms experienced to try to find a link and make sense of what’s going on, and dealing with the self-recrimination when you miss a day out because what if that was the one that would give you more answers? Pictures July 06 030Day trips, meals out, holidays all require military precision to organise and every decision is coloured by whether needs can be met or not. The feelings of isolation, for parent and sibling alike, because it’s frequently the case that there is no-one else nearby who has the same experiences or can truly understand. The lack of any conversation that doesn’t revolve around toileting and being too worn out to come up with an alternative subject.  The sense that I, as the parent, know more about the intricacies of my son’s chronic illness than any medical professional we meet along the way and the frightening realisation that my children know infinitely more than them too.

It’s about the heartbreak of holding my sobbing child at 3am, tears streaming down my own cheeks as I struggle to find the words to bring the comfort that nothing else can bring at that moment in time.

At our recent admission at GOSH, one of the gastro consultants told me that it is widely recognised that children with gastro conditions have the worst quality of life of any child living with a chronic illness.  EGID is an invisible illness, one where the individual frequently learns to hide, disguise and survive their struggles and just carries on regardless, accepting this life as their norm.  Families supporting a loved one with EGID often feel isolated – not just from their circle of friends, but from the medical community, who know little about it and may question the integrity of the very people who are fighting to get the best care they possibly can.  It’s not a parental fad about food allergies or an over-anxious Mum fussing about the small things; and it’s definitely not a figment of anyone’s imagination.  The effects of EGID can be cruel to experience and devastating to see.  So a change in attitudes is not only important, but a necessity for all those living with this diagnosis.

Now you know a little more about EGID and just how it impacts, take some time to think about how you can support those you know living with this disease.  Don’t think that there’s nothing you can do to help.  An offer of a cup of tea once the school-run is over, a home-cooked meal for the parent not in hospital or checking to see if there’s anything they need from the shops is more than enough.  No gesture is too small: a smile, a text message or even a FB like or comment on Twitter will let that family know that they’re in your thoughts and that there is hope for change in the future.

The Message from “My Man” at the BBC

Three weeks on from that episode of the BBC’s hospital drama, Holby City and I’m still reeling from the amazing response to my blog post and the unexpected bonus of two phone-calls with series producer, Simon Harper.  When I penned my heartfelt response to what Mike and I had watched on-screen, I expected to reach a few more than my usual readership and dared to hope that I might beat my previous “top score” of 186 readers in a 24-hour period with my letter to our local hospital.  I never dreamed that over 2,000 people across the world would read, comment on and share that plea for responsible portrayal of chronic illness in the mainstream media.  As well as sharing my thoughts through my blog, I made a formal complaint to the BBC and, through the wonder of Google, managed to track down Simon Harper and sent him an e-mail, expressing my concerns about the inaccuracies about EGID portrayed in that episode.

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

I didn’t expect to hear anything back, so you can only imagine my surprise and absolute delight when Simon not only replied to my e-mail, but also offered to pick up the phone and discuss the matter with me.  We agreed a day and time to talk and I spent the week making notes and talking to fellow EGID parents through FABED and other on-line forums to get their points of view on what I needed to raise in my conversation.  That first phone-call lasted for around 30 minutes and at no point did I feel that Simon was keen to close down the conversation and finish the call,  He was genuinely interested in learning more about EGID and understanding why this episode had caused such distress in the on-line community. We spent a long time discussing the difference between “intention” – what the program was trying to portray – and “perception” – what the viewing public understood – when it comes to producing a drama for television viewing and here Simon explains it in his own words:

The intention: “the guest character’s general allergies were a dramatic smoke screen to the actual underlying cause of his pain, neuralgia – but that in no way were those allergies supposed to suggest a condition as specific and, as I now know from talking to you, severe as EGID.  In no way was the story supposed to say that EGID was in fact just neuralgia!“.

The perception:I think it comes down to one scene where Zosia (the doctor) mentions that Nigel’s eosinophils are up –  due to his general allergies – and she then goes on to mention “his eosinophilic gastro-enteritis”.  What I can see maybe wasn’t clear was that Zosia, excitedly bandying round theories and possible prognoses at this stage of the story, is in fact supposed only to be raising EGID at a possibility at that moment.  perceptionA possibility that, in fact, turns out not to be the case.  But I can see that the phrasing “his” – combined with the fact that dramatically speaking, we never see Zosia rule out EGID (a moment we assume happens off-screen) – could have given the wrong impression.  It’s a tough call with medical drama – you never play on-screen every single beat of medical treatment that would happen in real life, choosing the moments which best serve the story,  and sometimes rely on the audience’s imagination to assume and deduce. It’s a delicate balance, and there is definitely a lesson to be learned here, because evidently, missing out that moment has in this case given the wrong impression.

I also mentioned my concerns that a range of inflammatory bowel diseases had appeared to be ruled out through a simple ultrasound, whilst those of us living with this family of illnesses know, from our first-hand experiences, that endoscopies, colonoscopies and biopsies are the only reliable ways to confirm a final diagnosis.  The conversation ended with an agreement that Simon would spend time investigating what research was done, talking to the consultant concerned and checking out the ultrasound situation before phoning me back a week later to talk some more.  I was struck by his commitment to unpicking where and how things went so wrong and have to confess to being cheeky enough to send another e-mail, thanking him for his honest discussion with me and pointing him in the direction of various EGID websites, so that he could truly understand what our families deal with on a daily basis.

A week later and that second phone-call happened.  Another 30 minutes valuably spent clearing up those outstanding points, including his agreement that the discussion regarding the ultrasound came across as far more definitive than was their intention.  I have to say I’m impressed with the research into EGID he had done during that week and appreciate that he took the time to properly review the research done originally for the program.  Finally, and definitely most importantly, he has sent a huge apology to our EGID family and I truly believe it is a heartfelt one.

apology

Courtesy of psmag.com

I repeat,  I  am absolutely aware that despite all this, an upsetting impression was given due to the way EGID was referenced and never ruled out on-screen and there is absolutely a lesson to be learned there for the future.  I can’t undo any upset caused, I realise, but do so hope I have been able to reassure you that we take the medical research aspect of HOLBY with the utmost seriousness and that in this instance, it truly was not an instance of inaccuracy, but, I think, a point of clarity that had an unforeseen impact on how the story came across.

 I truly have enjoyed our conversations, as not only did I get an education on the condition that  your son,  you, your family and many others are so courageously living with, but, as a producer, it is always absolutely invaluable to get insights on how our story intentions actually translate to an audience member –  that gives us great help in the way we tell our stories for the better to make HOLBY an entertaining but hopefully also stress-free hour!  And I do hope that you will continue to watch and enjoy the show.

A big thank you to Simon Harper for his willingness to be open and honest about the research done for this storyline, the errors of judgement made in the production, to talk to me not just once, but twice and his apology for the upset unintentionally caused.  As one of my fellow EGID Mums asked (and I wholeheartedly agree):

Any chance they’ll get Mr Allergy (grrrrrr) back and do a proper episode on EGID?

Simon, I wait for your answer!

Dear BBC Controller

Sometimes something happens that leaves me lost for words.

Having heard the furore on Facebook from fellow EGID parents, Mike and I sat down last night to watch Tuesday’s episode of “Holby City” on the I-player.  To say that I was speechless as the drama unfolded would be an under-statement; to say that by the end I was fuming would be a gross denial of the feelings that it had caused.  My hackles started to rise from the moment we were introduced to the character later described acerbically as “Mr Allergies” and we both sat in stunned disbelief as the storyline ended with everything being cured by a rapid diagnosis and a special injection.

For those of you who aren’t Holby City fans, or who didn’t have the misfortune to catch it when it aired on Tuesday night, let me give you a quick precis.  A young man, portrayed from the start as little more than a time-waster and with a list of allergies as long as your arm, is admitted into the hospital.  Nobody can pinpoint what’s wrong, but the doctor in charge of his care recognises that his symptoms fit with EGID.  She performs that little-known-as-highly-reliable diagnosing tool of an ultrasound (!) to rule out Crohns disease and Diverticulitis and comes to the conclusion that it could possibly be EGID, but is more likely to be a mental health issue due to him craving being a “rare” individual and the attention that obviously affords him.  On the basis of all this, and having given him leaflets about planning his own funeral, she tells him it’s a previously unidentified trapped nerve, gives him an injection and within minutes he’s up on his feet, completely cured and feeling better than he has in years.

If only M’s life were that simple.  If only a simple injection could take away the pain and acute discomfort that M struggles with on a daily basis.  If only I could tell him that the magic wand we both are longing for has finally appeared and all his hurt and frustration and despair will be gone, just like that.  If only it was likely that since he was small, my distraught 8 year-old has been craving nothing more than extra attention by being a medical rarity.  If only I’d known that it was all in his mind, or, more likely, all in mine as I’ve known from babyhood that there was something very wrong.

It has taken 7 years for us to reach a diagnosis, bypassing multiple doctors who thought it nothing more than a bad case of toddler diarrhoea and a somewhat neurotic mother.  Even though we now know his chronic illness by name, lack of funding and research means that we still don’t have any answers and every step taken with GOSH is a step of faith that something will help at some point. Every day I meet with people who have no idea what EGID is and the impact it can have on the family as a whole, let alone on my 8 year old himself.  Most of the medical staff we see have never heard of the illness, do not understand the subtle nuances of this hidden disease and have no idea how much we all need their help.  And we’re not on our own.  There are over 300 other families who look to FABED for support and share the highs and lows of this illness with each other, as we can understand like no outsider can; and that’s just in the UK.

 I’ve done my bit:

I’ve made my complaint known – via Twitter, via Facebook and via the BBC online complaints system – and I’ve written this blog.  BUT the damage is done.  Nothing is going to be able to take away their careless portrayal of EGID to the 5 million who watched Holby City on Tuesday night.  I would love to meet the researchers and writer for Tuesday’s episode to understand who they spoke to and where their information was sourced.  The daily battle that M and other EGID children struggle with bears no ressemblance to what was shown, but sadly that is the viewpoint the public will now hold.  I would love for them to spend time living life in the shoes of an EGID family, even for a day, so they could experience a fraction of the living hell that that life can be at times.  To comprehend the heartbreaking decisions we EGID parents have to make and the challenges of restricted foods, bowel problems, chronic pain and a multitude of daily medicines our babies deal with.  This type of inaccurate and frankly irresponsible representation of a serious illness is not what I associate with the BBC and it is left to parents like me, who have enough daily battles to fight, to raise awareness and voice our concerns.

You can do your bit too:  Just share this blog.  Make your family; friends; colleagues; strangers in the street aware of it and the rare illness that affects children like M and families like mine.  I don’t mind how you do it – RT it; link it to your Facebook page; send it out to your email address list; print it out and pin on noticeboards around your town; or get it emblazoned across the sky – but please do it and help us get our voice heard.