Tag Archives: help

Young Carers Awareness Day 2017

Today is Young Carers Awareness Day, a national day for the recognition of the estimated 700,000 Young Carers in the UK. I’ve written before about Young Carers and how G was finally recognised as one last year. She now regularly attends our local carers support group and has developed friendships with a couple of other girls who are in her year at her secondary school. Young Carers can care in a number of ways, the most obvious being giving physical help to family members, but, as we discovered with G, the emotional and psychological support given is just as important to recognise and can take just as big a toll on the young person. Organisations such as the Carers Trust, Barnados and Over The Wall all work to ensure that these young people are given the same opportunities as their friends and have time to be a child. This support is vital to ensure that G, her friends and others like them have as happy, healthy and balanced a childhood as they can.

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The many faces of friendship

Good friends have become a valuable commodity for our family over the years, something I have written about before and no doubt will write about again, but a few events over the last couple of months have made me realise yet again just how important these friendships are to us. In each case, the thoughtfulness of those friends turned what could easily have been difficult experiences into ones that were a little less stressful, something I always appreciate, but most of all at the moment as we deal with new school years, new medical teams and new jobs. Some of these are old friends, people I’ve known since my own school days who still play an important role in our lives, whilst others are those we’ve got to know as G and M build their own relationships with their classmates, but it doesn’t matter how long we’ve known them, they’ve been there to make a difference when it mattered.developing-friendship-machines-working-word-building-up-concept-construction-black-alphabetic-letters-forming-isolated-31326540

The first event was one of the most stressful I’ve had in a long time and even with this wonderful friend stepping in to help out, it was an experience I would have much preferred to do without. My Mum was away enjoying the wonders of Russia, Mike’s parents had flown home to Canada and Mike was back at his work, which is over an hour away from home even when the trains are running in his favour. For once I hadn’t left leaving work to pick up the children from school to the last possible minute and everything seemed to be under control, so naturally that was the point when everything suddenly went horribly wrong. My car wouldn’t start. Not only would it not start, but even with the engine turned off, the electrics seemed to have a mind of their own and the ignition refused to release my key. Even on the best of days this wouldn’t have been a good thing, but poor G had already had to disappear to the school library for an extra hour after school and I was now left with the dilemma of how to get home and get both kids without a car. Thank goodness for a good friend in our village, in the shape of the Mum of one of G’s friends, who kindly agreed to pick up M from his school, send her daughter to rescue G from their school and hold on to them both until either Mike or I was able to take them home. Her calm acceptance of the situation worked wonders on my frazzled nerves – I had by this point already phoned Mike in tears to tell him that not only had my car broken down, but that I was close to breaking down too – and reassured me that there was no need to panic as all I needed to do was get myself safely home. A couple of hours later I’d been rescued by our local garage and I rescued this friend from having to put up with my excitable duo for too much longer. It probably didn’t seem like much to her, I know it’s something I’ve more than willingly done for other Mums in the past, but it really did make a car-wont-start-186299740-e1431698432132bad situation a whole lot better and helped dampen my panic down to just concerns about how exactly we would manage without a car at all, given we’ve become a 1 car family over the last 6 months (and yes, I can be something of a “glass half empty” person at times and this was definitely one of them). Fortunately, the problem was nothing more than a flat battery and within 24 hours, it had been replaced and normal service had been resumed.

Fast forward a few days to when one of M’s friends brought a smile to his face with a small gesture that made the world of difference to my currently very sensitive lad. As I’ve mentioned recently, M has a well-stocked swap box in the classroom to ensure that he never has to miss out when his classmates bring sweets or treats into school to celebrate their birthdays. M has
become accustomed to swapping out the sweets for a non-edible treat of his choice, but I know that he misses the days when he used to be able to join in just like his friends and could eat a far wider range of foods. He had already brought home a number of Hero Attack trading cards for other birthdays, but I was met at the gate last week by a small boy hqdefaultwith the biggest smile on his face. This good friend and his thoughtful Mum had remembered that M can safely eat Foxes Glacier mints and so had taken a handful of those in for M, whilst the rest of the class enjoyed another brand of sweets. M was thrilled about being treated just like everyone else, his teacher was pleasantly surprised by this thoughtfulness and I was touched by this small step to include him in the thrill of the celebration.

Finally, we come to a recent Sunday afternoon spent with old friends and their family enjoying the chance to chat, play and share a meal. This is a friendship that has lasted over 25 years and which made them an obvious choice when we were choosing G’s godparents nearly 13 years ago. We arrived early afternoon allowing the children plenty of time to hang out and play together, whilst the adults enjoyed some much-needed catching up of their own. We talked about recent job changes, secondary school decisions and summer holidays as well as the ongoing saga of M’s health and hospital care; and before we knew it, dinner time had arrived. To our surprise, and M’s absolute delight, this wonderful couple had decided to cook a dinner that was completely M-friendly for us all and so we sat down to enjoy chicken kebabs, chicken goujons, rice, cucumber and some delicious applesauce together. friends-meal-jpgM felt a part of the proceedings in a way that was fantastic to see and when pudding arrived on the table – a safe baked rice pudding with more lashings of the applesauce – he was beyond ecstatic. That simple show of solidarity with our boy was amazing to see and whilst they didn’t think twice about doing it, was a thoughtful gesture that made an impact on us all. M didn’t feel that he was missing out on anything the others was eating and it perhaps gave them a small insight into what he lives with everyday.

As you can see, friendship has many faces and each of them, in their own particular way, makes a difference. I don’t think any one of those individuals thought they were doing anything out of the ordinary or extreme, but without those gestures our life would be far more challenging and a lot less fulfilling and colourful than it is.

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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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.