Tag Archives: raising awareness

Mental Health Awareness Week 2019: Body Image

This week is Mental Health Awareness Week (#MHAW19) in the UK and the focus this year is on body image – how we think and feel about our bodies. I’ve talked about mental health in relation to our family before as there is no question that the ongoing challenges of M’s ill health and the restricted diets of both children have impacted not only them, but Mike and me too. Just because I’ve not written about body image issues before doesn’t mean we haven’t faced them and I thought it was finally time to try and put my pen to paper and talk about our experiences honestly.

It’s taken me a long time to become comfortable with the way I look. I am not a size 10 having, as I have often said, passed through it on my way to bigger and better things. I struggled as a teen being taller and bigger than some of my friends and again as a new Mum, when some of my antenatal group bounced back to their size 8 jeans within a ridiculously quick space of time, something I was never going to achieve. The depression that has haunted me since my early teen years didn’t help with my sense of self worth and it has taken me 40 years to finally accept that I am the way I am and that that is enough. That doesn’t mean that I don’t occasionally have a crisis of confidence even now, but I have learned to wear clothes that flatter my shape and can truly step out with confidence when everything comes together to help me feel good about the way I’m presenting myself to the outside world.

There is no question that G is the spitting image of Mike and his side of the family, which gives her beautiful tanned skin and dark hair, although her build is very similar to mine. She has struggled at times with not being as slender as some of her friends and these days complains that she appears to have stopped growing whilst her friends are still inching past her. She is a beautiful young lady on the inside as well as out and we encourage her to find her worth in the way she behaves and reacts to the people who are around her and not her physical looks. We have all heard the criticisms of both print and social media and the airbrushed images that all too often create unrealistic expectations in our children and young people. The increasing popularity of taking selfies and then using social media filters to manipulate the image presented to the world can add to our unrealistic perceptions about the way we should look. I still remember a discussion we had with one of the paediatricians when she was little, who told us that the danger these days is that our perceptions and expectations of body shape and size are such that we fail to recognise when people are a healthy weight for their height and instead view them as overweight. G is learning to eat healthily, keep active, believe in herself and, most importantly, to not constantly compare who she is to her friends.

It is easy to believe therefore that if you’re slim you have no reason to have body image issues, but I can tell you that’s not true either. M is the complete opposite to the rest of us and has always been on the slender side. He is chatty, witty and can ooze absolute self-belief at times, and yet he has struggled with feeling too thin, too short and lacking muscles when compared to some of his friends. He refused to wear shorts during his Junior school years, even when the weather was gloriously sunny and we asked for permission for him to wear jogging trousers rather than shorts for PE – all because he hated the way his legs looked. These days he’s a little more prepared to reveal his legs, particularly when it’s too hot to be comfortable in jeans, but he frequently comments on just how much taller than him many of his classmates are.

Boys can be just as much affected by body image issues as girls can and we’re lucky that our secondary school is very aware of that fact and looks to support all of the pupils in its teaching about these matters. We are all aware that puberty is a tricky time and one that needs to be carefully navigated by all involved. At home, we look to help both G and M grow up with a positive self image and belief as well as teaching them the importance of balanced meals and regular exercise. We also encourage them to talk openly and honestly with us about how they’re feeling about various issues, not just about the way they look, and will help them find answers or solutions if they want. Our youngsters grow up sadly believing all too often that they need to be thin and conventionally beautiful to succeed in this world and I find it devastating that they do not truly understand and believe that there is so much more to achieving success than the way they look.

Advertisements

Young Carers Awareness Day 2019

Today is Young Carers Awareness Day 2019 and the purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs. Young Carers often struggle with mental health problems of their own due to the strains they can find themselves under, hence the launch of their #CareForMeToo campaign.

I was recently invited to write a blog for Over The Wall about the impact of their camps on our family and I chose to particularly focus on the importance of the siblings camps for children like G, who is recognised as a Young Carer locally. I thought I’d take the opportunity to share my thoughts here too.

 “…when one person in the family has a chronic illness, the whole family has it…”

Jamie-Lynn Sigler

When you live with chronic illness you know that it is about so much more than just the disease itself. Pain, exhaustion, medicines, appointments and hospital admissions are often accompanied by a loss of self-confidence, doubts about self-worth and mental health issues that need time, patience and understanding to come to terms with and overcome. As parents to a child with a rare illness that is little known and little understood, Mike and I have had to find a resilience and strength within ourselves to not only support M as he finds his way to understanding his condition and living his life to the fullest, but also to fight those battles that he is not yet ready to tackle himself.

For the last 8 years, since our appointment with M’s first gastro consultant, our focus has been on finding answers and researching ways to give him the best quality of life we can despite the challenges he faces. As he now heads into his teens, we are seeing the fruits of those endeavours as M begins to make his own choices about the foods he eats, knowing full well the reactions he may experience, and taking on more responsibility for his medicines.

You could say that we’re achieving what we set out to do when we got his diagnosis: to raise a young man who won’t let his illness define or constrain him and who believes that he can be successful no matter what; but we have not been alone in supporting M. Family, friends and our local community have walked every step of this journey with us, helping us in more ways than we could ever imagine was possible; but there is one person who has been there since the very beginning, without any choice and yet who loves M unconditionally and is an indisputable rock for him, even when they don’t always see eye to eye.

She is, without a shadow of a doubt, the unsung hero in our family story.

Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.

From the interruption of frequent hospital appointments to badly timed admissions over her birthday 2 years in a row, G has had to take the back seat to M’s illness more times than seems fair and these are not the only ways in which her life has been affected by his diagnosis. We cannot ignore the reality that having a chronically ill sibling has had a massive impact on G and her mental health too. Anxiety, panic attacks, facing fears and anger management issues are all inextricably tied up with the role of being a young person caring for another and it has been crucial we find a supportive environment for her that has taught strategies for dealing with her yo-yoing emotions and provided a safe and understanding outlet for them. Encouraging G’s involvement with our local Young Carers group as well as applying for a place at the Over The Wall Siblings camps have been important steps in recognising the impact that M’s health has had on her over the last 15 years and have helped her feel that we really do understand and appreciate all that she has had to put up with and sometimes give up too.

That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.

Polar Dip

Despite the assertions of some Canadian friends that it couldn’t be a “real” polar bear dip without having to break some ice, in the middle of December Mike decided to take part in our local New Year’s Day polar swim. With just a smidge over 2 weeks to prepare for this madness, you wouldn’t be blamed if you thought Mike was completely mad – believe me when I say it was something that went through my mind too – but the reason for it is actually a fantastic one.

You have all heard me talk a lot about the amazing charity, Over The Wall, who provides free therapeutic camps for children with serious health challenges as well as their siblings and families. G and M have been fortunate enough to go to these camps twice each over the last 3 years and the difference it has made to them both is incredible. Since G’s first trip to the South Siblings Camp in 2016, we have taken every opportunity we’ve been able to find to raise awareness and funds for them – from M’s presentation at school to G’s sponsored hair-cut. I’ve talked to more people than I can even begin to count about just how special this charity is and in the last year have been delighted that 2 fellow EGID Mums were successful in their applications for camps too.

2019 marks 20 years since OTW’s first camp in the UK and they are looking to mark that anniversary by being able to send 1,000 children, young people and families to one of their camps. We want to help them achieve that goal, knowing from firsthand experience just how invaluable their camps truly are, and will be spending the year finding new ways to support them just as they have supported G and M.

And that’s why Mike kicked off our fundraising year in style with his Polar swim. He chose to swim in 9° water for 20 minutes – 1 minute for every year that Over The Wall is celebrating this year – and we set a tentative target of £200. Thanks to the generosity of friends and family, Mike not only more than managed his New Year’s Day dip, but also raised a fantastic £223!

If you’re able to give even a small amount, I know that Over The Wall will make very good use of it and you will be helping enrich the lives of young people living with health challenges, just like G and M. You can donate via their special 20 years donation page here.

Welcome to 2019

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

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

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

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

Small businesses too good to miss!

There really is something very rewarding about shopping local and supporting small businesses and that is even more true when those small business owners are also friends, or become friends as a result of their business. We have been extremely lucky over the last few years to develop friendships and therefore fantastic working relationships with food producers who have, as a result of those friendships, readily taken on the challenge of feeding M, even at his most restricted, and succeeded to the absolute delight of us all. I would really recommend getting to know your local farmers and food producers and don’t be afraid to strike up a conversation with them to see if they can help – you might just be surprised by their reply.

Borough 22 is one such success story and someone I love to shout out about on a fairly regular basis as you’ll quickly discover if you browse my blog. Created by the incredibly talented Ryan, who holds the as yet unchallenged place of ultimate superhero in M’s heart, this company bakes the most delicious allergy-friendly doughnuts, which have graced our table on many occasions. I discovered Ryan through the FreeFrom Food Awards a couple of years and he readily accepted my challenge to create an M-friendly doughnut using just the 5 safe foods M had at the time. Not happy with just creating a passable doughnut, Ryan continued to try to perfect the recipe each time we ordered until he produced a masterpiece that has kept us all delighted. With the countdown to Christmas now fast approaching, I will be placing our order for doughnuts soon and would highly recommend you beat the final order deadline of December 12 to add these unmissable treats to your seasonal table.

Another favourite was also a discovery thanks to the FreeFrom family of Awards, though this time the Eating Out Awards, rather than the Food Awards. Café Nouveau near Frome is a worthy three-time gold winner and owner Susan has become another family favourite since we first judged the venue 3 years ago. She has also embraced the challenge of feeding M safely and was delighted to hear this year that his list of safe foods had expanded enough for her to try a new dish when we visited as part of this year’s judging panel. This paragraph is something of a confession to Susan, who I know is a regular reader of my blog, as we had gone on the pretence of a late birthday lunch for Mike, carefully concealing the fact that it was a convenient cover story for our judges’ visit. This anonymity is critical when acting as a judge and it was fantastic to see first-hand that Susan’s care for her customers extended to all who were visiting the café that afternoon and not just those she might have suspected! G loves eating out here as she can happily choose anything from the menu and was delighted by the prospect of safe waffles the weekend we visited, though she was disappointed to learn they had run out of the dairy-free ice-cream she was hoping to sample.

My final shout-out is for a new business to my blog, but one that we are delighted to have found. Ben is an ex-work colleague of mine and he and his wife Mandy have become firm friends over the last few months. They own a small-holding just outside of Bristol and Ben has ventured into the world of producing home-made meat products, including some great gluten-free options, through his business, Ben’s Farm Kitchen. G has been delighted with their delicious GF honey roast sausages and sausage rolls, whilst Mike and I have become big fans of the “normal” and GF scotch eggs, especially the pickled beetroot ones. However, the real success story has been their willingness to try and prepare M-friendly sausages and burgers, which has possibly been one of the highlights of 2018 for M. I worked with Mandy to make sure the ingredients used were as safe for M as possible and the meat mix she created has been a huge hit in our household. M has already asked me to make sure we have a supply of “his” sausages and burgers in for Christmas and that’s a request I’m delighted to fulfil. Not only do we know the provenance of the food we’re eating, but I’m reassured that they want to get it right for the family as much as we do.

#NEAW2018: E is for Engage

May 26: E is for Engage

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

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

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

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

#NEAW2018: T is for Thank

May 25: T is for Thank

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

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

Thank you xxx

#NEAW2018: A is for Awareness

May 24: A is for Awareness

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

#NEAW2018: C is for Change

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.