Category Archives: Chronic Illness

Impractical Jokers – Birmingham 2017

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The last month or so has been filled with an unusual number of opportunities for Mike and me to take a little time off from our jam-packed lives at home and have some much-needed time to relax, rejuvenate and re-find ourselves as a couple. We’ve been fortunate that, just as she did last June when we enjoyed my surprise holiday win to Italy, my Mum was willing to take charge of G and M for the duration and we’ve been celebrating our 40th birthdays in style. Our first treat involved a road trip to Birmingham, an overnight stay near the Barclaycard Arena (previously the National Indoor Arena) and an evening spent laughing, courtesy of the tickets I had bought for Mike as part of his 40th birthday present.

img_13471Just over a year ago we discovered the American hit comedy show, Impractical Jokers and have spent many hours curled up in front of the TV, often with the children added to the mix too, giggling and guffawing at the escapades we’ve watched unfold in front of our eyes. For those of you who have never heard of the Impractical Jokers, this hidden camera show follows 4 childhood friends from Staten Island, Sal, Joe, Murr and Q, as they play a series of practical jokes on each other and the unsuspecting general public. In a hyped-up version of “Truth or Dare”, they challenge each other to complete a string of ridiculous tasks, knowing that failure to complete or achieve the goal will result in the biggest loser of that episode having to undergo a punishment at the hands of their friends.

The Jokers usually do not know the details of the pranks until the moment they have to do them and are often pushed to say and do things that are well beyond most people’s normal comfort zones. From saying outrageous comments when serving customers at one of the many stores, fast food joints or cafes featured from New York, to having to convince strangers that they have met before in the most unbelievable set of circumstances, the pranks nearly always have us all laughing out loud. I’d be hard-pushed to say which part of each show we most enjoy, but the final punishments are almost always as funny as the pranks themselves and go from the sublime to the ridiculous. img_13531In many ways, it’s seeing the response that adds to the humour of the situation. My Mum freely admits that she can’t see what makes us laugh so much and perhaps it’s true you require a certain quirky sense of humour to enjoy the half-hour episodes.

Having missed out on tickets for their first UK tour in February 2016, I was determined to get some for January 2017 and was delighted when I managed to secure 2 great seats at the Birmingham Barclaycard Arena. It took some strategic planning with my Mum – well, I had to check she’d be in the country to look after G and M for the night! – but we got there in the end and I even managed to keep it a secret until the big reveal on Mike’s birthday in October. M was not so impressed with our planned night out, but Mike was as thrilled as I was and the time just flew past until we found ourselves taking an afternoon off from work and bombing down the motorway towards our final destination. We found a great place to stay – City Nites Serviced Apartments – within walking distance of the Arena that included a secure location to park the car and enjoyed a delicious dinner at Thai Edge before the show itself started.

We were hoping for a great night out and weren’t disappointed. The Jokers, also known as The Tenderloins comedy troupe, have been performing stand-up for years and their show was filled with a skillful mix of scripted jokes, some improv and the inevitable reveal of previously unseen clips from their successful TV show. I’ll be honest, a few long days and nights on UK tour had obviously taken their toll on all their voices and a heavy drinking session meant that one member of the group in particular was not as sharp as he usually is on-screen, but my favourites, Sal and Joe, were in fantastic form and made the night for me. Mike loved being at yet another live comedy show, having already enjoyed seeing Josh Widdicombe and Dave Gorman for previous birthday treats. It was a brilliant overnight break from the children and one that we both needed after the medical stresses that had stalked us at the end of last year.c2dvr6txeaan_op

Young Carers Awareness Day 2017

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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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Beating the Blues

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Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

New Year Resolutions

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Two weeks into 2017 and, for some, their good intentions may already be beginning to waver as the grey skies, endless rain and post-Christmas blues sap away any enthusiasm that might have existed at that moment of pressure when they were asked by a well-meaning friend or work colleague what their New Year resolutions were. Love them or hate them,newyearsresolution you’ve probably got an opinion of them, even if it’s just that they’re not worth doing as only the very few manage to keep to their chosen goal.

Last year, Mike and I both had resolutions, though of very differing types and whilst I was fully aware of what Mike was planning to do, I set myself a goal that I chose not to share with anyone. Mike’s resolution for 2016 was to extend his previous challenges of giving up alcohol during Lent by trying to be dry every other weekend throughout the year. He sensibly took the approach that there would undoubtedly be occasions when he would want to drink 2 weekends in a row, so was flexible in managing it, sometimes choosing to abstain for 2 weeks before drinking for 2 weeks. It seemed to work well and he was delighted that he reached the end of the year having managed to stick to his resolution for the full 52 weeks.

In comparison, mine was a blog-based goal and one that I was secretly hoping to achieve and would monitor throughout the months to see if I was still on track to succeed. The one thing I love about the blogging platform that I use and something that really appeals to my accountant’s heart, is the statistics I can access and drill into on a regular basis. As well as showing me my daily hit rates and what posts are proving particularly popular, I can also compare and contrast my monthly statistics and averages since I first started writing nearly 4 years ago.  In my first 10 months, I achieved nearly 6,000 views, whilst the following 2 years saw me hitting the heady heights of over 11,000 blog post reads over the year. Last January I decided I wanted to break the 12,000 mark and set myself a target of 1,000 hits a month to reach it. Some months it was close with the lowest read rate being 1,030 in March, whereas other months were hugely successful including a 2016 high of 2,396 in August. My year-end goal of 12,000 was well and truly met and I can confirm Successthat I actually achieved over 16,000 hits in the year, something I never really thought possible when I started blogging in 2013. I haven’t set myself a NY resolution for years, so it was a fantastic feeling when I finally passed that last 1,000 mark in December and could quietly pat myself on the back.

This year our household has taken something of a mixed approach to the whole matter of resolutions, being firmly split between 2 distinct camps: those who do (Mike and G) and those who don’t (M and me). I’m not going to publicly share the resolution decisions of my loved ones at this stage in the game, though I promise to let you all know if they manage to achieve what they’re planning to do as and when they reach their end goal. As for me, well it’s not strictly true that I haven’t set myself a resolution, but rather a year’s goal that is to successfully juggle the new pressures of blog writing, awards judging, T1D managing, parenting and full-time working so that I can do enough in each area and hopefully fail at none. My focus is having to be sharpened at the moment to ensure that none of the balls is dropped and I guess only time will tell how successful I can actually be. Of course, I will undoubtedly share my progress on my blog.

How about you? Have you started 2017 with a resolution or goal in place? I hope that if you have you’ve managed to keep it so far and that you have continued success with it!

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Thermos-inspired lunches

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There are 2 things that are promising to totally transform the look of M’s packed lunches for school in 2017. The first is the reintroduction of parsnips to his diet as I’m finally able to cook a crisp-like addition for his lunchbox, which makes them seem a lot more like those of his friends after a long time of feeling so very different. 9270635_r_z002a_uc1440961The second was thanks to a somewhat last-minute Christmas present from good ol’ Father Christmas, which M is absolutely thrilled with and can’t wait to try out now that the new term has started – an individual thermos flask complete with a folding metal spoon tucked neatly into its top.

He’s been considering the matter at great length and has already come up with a long list of meals that he is keen to try out over the coming months. From pasta dishes including lasagne, to risotto and stir-fry, the options are endless, but today’s maiden meal was new-found favourite, parsnip and apple soup. This simple meal is beautifully easy to make, which is something I’m extremely grateful for now that I’m back to work full-time and every second saved cooking is a second gainfully employed somewhere else. Even better, the range of herbs and spices that I can safely add to M’s meals means that I can img_12781create enough subtle flavour differences to his soups to provide some much-needed variety and keep him engaged in the novelty of his first hot school lunches in a long time.

For the launch of our experimental hot meals at school, I made a spicy apple and parsnip soup and included a few of the Rude Health mini rice crackers that have become an integral part of many of M’s lunch and snack times. Whilst nothing can really compare to the unquestionable delight of dipping some crusty French bread into a bowl of rich, creamy soup, the portion of homemade, and safe, parsnip and apple soup accompanied by a handful of rice crackers was everything that M was longing for it to be and that meant it was a resounding success. Over the coming weeks I’m looking forward to experimenting a little more with texture and flavour and will be looking at replacing the apple with pear as well as changing the herbs added to each bowlful. Most of all, I’m hoping that M continues to be excited about the prospect of enjoying a mix of hot and cold meals during the next few months of the school year.

Looking ahead

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The start of a New Year is always an opportunity to reflect on the things that have passed, but more importantly, to look ahead to the adventures that are yet to come. We had a 2016 filled with as many highs and lows as we’ve faced in previous years and I don’t doubt that 2017 will be equally challenging in ways that are both startlingly similar and scarily new. I’m looking forward to a year that will investigate new possibilities for M’s diet and seek potential answers for what’s going on in his body as well as watching as G tries out new opportunities and starts thinking ahead to the school subjects she wants to study for GCSEs – a conversation that has filled our end-of-holidays walk this afternoon. We don’t know exactly what this year will bring, but it’s always good to look back on everything that has brought us to this place:

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Giving something back

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23567358210_2327dd548d_mAs we counted down the days to Christmas within the confines of GOSH last year, one of the seasonal highlights for both M and me was the carol-singers that we encountered during our stay. Hearing the gentle strains of familiar carols outside the main entrance, within the beautiful chapel and along the hospital corridors helped us feel a part of the excitement building in the outside world, even though M was ward-bound for so much of the time. I was fortunate enough to be able to go to the Carols by Candlelight service at St. George’s Holborn, a church just across the road from the hospital itself 23104290053_5ffd34741a_zand M, Mike and I had great fun another evening joining the choir from All Souls Church, Langham Place as they sang their way around GOSH, serenading patients with their cheerful Christmas singing.

Knowing how much those experiences lifted our spirits during a difficult and emotional time away from home, I leapt at an opportunity this year to give a little back. One of the choirs I sing with was invited to spend an afternoon singing carols and Christmas songs at a regional Children’s Hospice, whilst one of the local football teams delivered presents and spent time talking to current patients and their families. It had been an occasion that I’d been hoping to take part in last year, so as soon as I heard we were invited back this year, I knew that I just had to be a part of it if at all possible.

img_13021Yesterday was that day and what a truly magical experience it was. A small group of just 9 of us gathered and spent the afternoon singing carols and Christmas songs to the children and their families, who are so dependent on this Hospice to provide some precious moments of respite during the year. I took the opportunity during our visit to speak to staff members, parents and even some of the children themselves and gleaned just a small insight into how important this Hospice is to them all. There were no tears yesterday; just a celebration of the individuals gathered in those rooms and an opportunity to make memories that will last a lifetime. When favourite songs were requested, we gladly sang them to bring a little extra cheer to what was already an amazing party. I gently persuaded – ok, 15578155_10154311119488790_2228089488536286007_operhaps, more honestly, I coerced with a cheerful smile and a little Christmas spirit – some of the footballers to join us for a rousing rendition of “The Twelve Days of Christmas”, which ended with friends, family and staff also singing along and sharing in the joy of that moment.

We received thanks for our attendance again this year, but the truth is that we received from the experience far more than we gave. It was a huge honour to be able to be even a small part of a fantastic event and, for me, a real opportunity to give something back to families that are living through a reality that reminded me just how lucky our family truly is. Not everybody can sing; not everybody will be able to offer practical help, but if you can find a way to #givesomethingback this Christmas season and beyond, please do.

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A Bento Box Journey

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Packed lunches can easily become boring

Have you ever seen a picture of something on-line and be so impressed that you just wish you’d known about it sooner? 18 months ago, a friend and fellow FABED Mum started posting on FB photos of the most incredible Bento boxes that she had been putting together on a daily basis for her daughter’s school packed lunches. Contending with a limited diet as well as other sensory issues, this Mum wanted to create an appealing meal that would encourage her child to eat whilst at school and ensure that she didn’t feel like she was missing out because of her restrictions. On a regular basis, I see updated photos of her most recent creations and I love how she tailors the themes of the boxes to match events at school or in the outside world. I can’t imagine anything better for a child than opening this lunch box at school to discover what food has been included and the theme that has been picked for that day, and I’m sure she must be the envy of many of her friends. To be frank, I’m quite envious as I would love to have these bento boxes for my own lunches too!

 Are you wondering exactly what I mean? Well, take a look at these amazing boxes that have come from N’s kitchen over the last year:

 But why take the time to make your child a bento box meal like these? Without a doubt, a creative lunch may take a little bit of forward planning, but I’m certain that the benefits gained far outweigh the extra time and effort needed each day. Children with food allergies often have an unavoidable sense that they are missing out because they can’t enjoy the same crisps or chocolate or even sandwich fillings as their friends, but when their safe meal can suddenly become as appealing, if not more so, than that of their peers, that disappointment can start to disappear. 12662534_10153359363278176_2469231552454213776_nA child with sensory issues or a reluctance to taste new foods and textures may be tempted to take a bite when faced with a Minion banana or a star-shaped piece of cheese. Of course, there’s no guarantee that your hard work will reap immediate rewards, but as with most things, a continued effort may make all the difference in the long run.

 I just wish M and G were back at the stage of just starting school as I can well imagine how delighted they would have been to eat lunches as inventive as these, but I think we’ve probably passed that window of opportunity, although I am tempted to ask M if he’d like them during his final year of Junior school. As you can see from the pictures I’ve shared above, what helps make the boxes so special is the various pieces of paraphernalia that can be bought online from Bento box company, Eats Amazing. There is an astounding amount of bits and pieces available, from mini cutters to letters and accessories, all there to help turn the run of the mill into a work of art. I suggest that you give yourself plenty of time to discover all that the website has to offer and choose items from themes that will not only appeal, 10629611_10153108516363176_8999877504252818384_nbut can be used on more than one occasion. At first glance, this isn’t a cheap hobby, but by picking a few strategic pieces and taking inspiration from everything that’s available, I am sure that this would be a sound investment for anyone wanting to make their child’s lunchbox something really special. I suspect it would have even tempted my pickiest of eaters when she was a few years younger.

 I am so grateful to N and her family for sharing their bento box journey and showing how a little creativity can make a big difference to a child surviving food allergies and issues in the school environment.

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The 450th day

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449 days…

449 challenging days of trialling one food after another until 17 foods have been tasted and rejected by M’s body.

449 emotional days of soaring highs and crashing lows as hope is dashed time and time again.

449 testing days of comforting and reassuring and convincing an increasingly despondent 10-year-old that we will keep trying, keep persevering until we find that elusive new safe food.

449 long days since M last successfully trialled a food and believe me when I say that we have all felt the impact of every single one of those days.

And then came day 450. 450_banner_closeup

A glorious, cheerful day. A day when food challenge number 18 was accepted and finally, after 449 days of waiting, the sun peeked out from behind the dark clouds and we had success.

This success has been hard-fought for on all levels and we all needed it, not least M. After nearly 15 months on a diet consisting of rice, chicken, cucumber, apple and pear day in, day out, he finally gets to add parsnips to his list and there’s no-one more delighted than him. It’s not been a 100% pass, but it is one that he desperately needs right now and we’ve taken the decision that the boost to his morale is worth so much more than total perfection. We’re only a couple of weeks in and the variation it has already brought to meal-times is, quite simply, a game-changer. From mashed parsnips to parsnip crisps and roasted parsnips to parsnip and apple soup, the options are endless and so are the smiles in our house. And, just like that, those 449 days are over and forgotten, and instead we’ve started on day 1 of our next set of adventures.

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Indescribable fear

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b6e83c2b62a1e0ec0cd3fbc189efbc94When I wrote this blog last week, it was one of the hardest things I’ve ever sat down to write. Life has a way of throwing a curveball when you least expect it and these last 2 weeks have been no exception. My words captured my emotions at their most raw, at their most honest, when the fear of what could be had me tightly in its grip.

In November I wrote a blog all about World Diabetes Day 2016 that contained these words:

“The 18 years since that fateful day have been filled with… the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment…”

not realising that that moment would come so much quicker than any of us expected. Before Diabetes awareness month had finished, I went for my annual retinal screening at the local eye hospital and was given the devastating news that my right eye is showing the early signs of diabetic retinopathy. I was told that there is no choice. That I have to have laser surgery as soon as possible. Before Christmas. The last few days have been full of unending tears and constant fears about what this could mean for my sight and not just my future, but the future of our family’s life together.

The good news is that the retinopathy has been caught early, far earlier than that in my left eye 18 years ago and the consultant is confident that the amount of laser burns I will need should leave me with enough vision to still be able to safely drive my car. He listened to my concerns that the same complications could occur again and told me that technology and the equipment used has come on a long way and that the treatment is a lot more gentle than it was then.

The truth is that I’ve a lot to be grateful for this time round, but that doesn’t stop the fears that have haunted every night’s sleep since that appointment.

The fear that I might never be able to read or write without aids.

The fear that adventures to new places will be restricted to the things I can hear and smell and that I will no longer be able to fully appreciate the beauty of the world surrounding me.

The fear that I will lose so much of the independence that we all take for granted and will become dependent on those who surround me.

The fear that there will ultimately be an unfair role reversal and my children will feel a responsibility to look after me that they should never have to feel, ever.

The fear that I might not be able to clearly see my beautiful children’s faces ever again.

Nearly 2 weeks on and the fears have been joined by their eager and willing bedfellows, confusion and doubt.

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Unable to trust fully the opinion of our local eye hospital who did, after all, make such a dreadful mistake 18 years ago and left me dependent on the ongoing health of my right eye, Mike and I took the decision to go to Moorfields Eye Hospital, London for a second opinion. I needed to be sure; to be certain that this time the advice I’d been given was right and to have the confidence in the doctor who would treat my eye. That’s what we expected to get, but instead I’ve been left confounded by the outcome of that appointment, almost as much as I was stunned by the appointment at our local the previous week. Last Wednesday, this consultant said that he could see no signs of diabetic retinopathy in my right eye. None. At. All. He could not identify anything that would cause him to support the suggestion of my local hospital that I had urgent laser surgery and would, in fact, suggest that, given my past experience and subsequent loss of sight in my left eye, no treatment be given at the moment. He could not justify even considering it as an option.

Which left me feeling absolutely bewildered. Two top eye hospitals; two specialist doctors; and two very different opinions. I wanted to be pleased by the new diagnosis, but those fears had taken a hold and weren’t willing to let me go without a fight.

So yesterday I was back at our local eye hospital, seeing my named consultant, who is considered to be one of the top ophthalmologists in the field of diabetic retinopathy. This is a specialist who knows me, saw me safely through 2 pregnancies and carried out my cataract operation 8 years ago. I can’t lie. My confidence in our local hospital is at an all-time low and I dread to think what the outcome might have been if we hadn’t decided to seek a second opinion before the surgery took place. The outcome was the very best that I could hope for. She completely concurred with her Moorfields colleague and said that laser surgery is the very last thing I need right now. She acknowledged that our trust in our local hospital will be at rock-bottom and knows she has to do a lot to rebuild our faith in them. From this point on, she has insisted that I will only see her for my future appointments and has given me free access to her via her secretary whenever I need it.

The last 2 weeks have been a terrifying rollercoaster ride that we were unable to escape until we reached the end. We have been supported by our fantastic families and an amazing group of friends who have offered love, prayers and help every step of the way. That help has enabled us to protect the children from the turmoil and kept our fears from impacting on them.

I am hoping beyond hope that those fears will never be realised, but only time will tell.