Category Archives: Personal

Perfect Faces for Radio

Looking back this evening at some of the photos taking up the precious memory that’s left on my phone, I’ve realised that there have been so many things that I haven’t quite got round to sharing with my blog. As you’ll have noticed, my foray back into the world of full-time work after being made redundant almost a year ago has meant that I just don’t have the time to dedicate to writing 2 or more blog posts a week, but I still want to share many of our recent experiences and so the updates may take just a little longer to arrive on your screens than before.

The first looks back to May, when every year we mark National Eosinophil Awareness Week and for the last 4 years, a big part of my campaign to raise awareness has involved live appearances on our local BBC radio station, talking all things EGID and answering questions surrounding the inevitable interest about M’s extremely restricted diet. Whilst it is always a challenge to think on my feet and answer questions without any prior warning about what the presenter might ask, I relish the opportunity to spend 20 minutes speaking about EGID and what it means to our family to live with it day in, day out to those listening within our regional broadcast area. I have spent 5 years being extremely grateful to those within the EGID community who have been honest about their experiences and take the time to support those who are newly diagnosed and often looking for an understanding that the medical community jut can’t offer. Sharing our story, both through my blog on a regular basis and through these occasional newspaper articles and radio appearances, are my way of giving something back to our EGID family, new members and old.

This year I wanted to change the dynamics of that radio interview if I could and so asked if I could bring G and M along to our local BBC studio to talk about what living with EGID means to them. The radio presenter and his team were more than happy to agree and so it was that on one rather glorious Monday morning, I found myself heading into town with an excited M and somewhat apprehensive G in tow. They had slight nerves that they didn’t know in advance what questions might be asked, but M had sought advice from his Stagecoach drama teacher the previous week and was confident that he knew how to develop his responses to any closed answer questions to avoid giving one word answers. I’ll be honest, I did have some concerns about both children speaking live on local radio: I wasn’t convinced that G would break from her current monosyllabic, teen state and had absolutely no idea what might come out of M’s mouth at any moment. In both cases, I would be hard pushed to exert any sort of control over them once we were on air, except by thoroughly preparing them on our car journey there and then reminding them of my expectations through meaningful glances and subtle eyebrow raises across the microphones!

To my delight, both children were absolute stars and whilst, unsurprisingly, M took to the experience like a duck to water, even G found her confidence to answer some of the questions and we had only one awkward silence to contend with during the 20+ minutes of our appearance. The children spoke clearly and slowly to make sure they could be understood and took their time to give well-thought out answers without leaving the listeners waiting for the dead air to be filled. They both loved every moment of it and have expressed an interest in finding out more about possible future careers that would see them working for the BBC, though G was fascinated by the research being done for the different news programmes and M has a yearning to explore the life of a TV camera man. My big thanks go to our local radio station who were prepared to take a chance on interviewing G and M live on air and for giving us, yet again, the opportunity to spread the word about EGID far and wide.

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#40thcelebrations

It will come as no great surprise to many of you when I say that February 2017 has been all about the #40thcelebrations in our household. Last year, I marked the occasion of 30 years living side by side with T1D, so this year it only seemed fitting that I celebrated with equal clamour that next big milestone in my life: hitting the big 4-0. c5ao3diwmaatk4uI am a huge fan of celebrating birthdays in style and you will often find the birthday cards in our house hanging around for a good 2 or 3 weeks past the notable date itself. Unlike my husband, and possibly much to his disappointment, I don’t likeabsolutely hate…’m not so keen on surprises and would much prefer being involved in the planning, to a greater or lesser extent, of any significant occasion. The plans for celebrating my 40th this year were no different.

When I turned 30, there were 2 destinations I wanted to visit, Las Vegas and New York. We discussed at length where we would go and settled on Las Vegas, with the clear understanding that only New York would do when it came to turning 40. The last 12 months or so have been filled with booking, researching and planning the finer details of our perfect trip to this iconic city and since just before Christmas, the excitement has gradually been building. Thanks to my Mum, we were able to spend an entire week in the USA and even managed to tag on a couple of extra days at the beginning to be part of the judging panels for this year’s Free From Food Awards. Her generosity meant we could take full advantage of travelling without children and fitted the trip in before we hit the price hikes of February half-term.

c3p22qjweaihqonWe decided to travel with Virgin Atlantic, from whom we have had great customer service in the past and again were not disappointed, especially when they marked my birthday with a couple of complimentary glasses of bubbles and bars of chocolate on the flights. We also chose to book our hotel and city passes as part of a Virgin holidays package and settled on the Hotel Beacon for our stay. Located on the Upper West Side of NYC and within 5 minutes walking distance of Central Park, the Hotel Beacon was a fantastic choice and we loved everything about it. As well as being able to walk to Central Park, we were also able to walk the couple of blocks to the 72nd subway station and were surrounded by a great selection of cafes and restaurants to try. What we particularly liked was the fact that the rooms have fully equipped kitchenettes, which may have only had a limited use for our stay this time, but would be perfect for when travelling with anyone with food allergies who might want to prepare safe food themselves.

img_34951Our trip was understandably dominated by our sightseeing plans and we did pretty much everything we wanted with a few added extras thrown in for good measure along the way. I’d be hard-pushed to narrow down my favourite part as everything we did was gloriously marvellous in their own unique ways. Mike loved seeing the architecture of the city, from the splendour of the Empire State Building and the Chrysler Building, to the stunning beauty of the interior of Grand Central Station and the sheer engineering magnitude of the Statue of Liberty. One of Mike’s favourite parts was, without doubt, our Sunday spent on Ellis Island, where he was able to track down the immigration paperwork for when his mother and her family moved from Jamaica to Canada by way of NYC in the late 1940s.
img_35731I loved our wander through Central Park, both in the blazing sunshine and then again in the snow as we made our way to the Frick Collection, a fabulous small museum containing some leading Old Master paintings and sculptures. Around every corner we stumbled across yet another masterpiece and I am so grateful to my colleague who recommended this as an ideal way to spend a couple of hours seeing these well-known pieces of art. Thanks to our open bus city tour, we also discovered, to my absolute delight, where we could see the original Winnie-the-Pooh and friends given to Christopher Robin Milne before they became the inspiration for that much-loved children’s classic, a visit that took up hardly any of our time and yet was a worthwhile stop for this literature fan. In stark contrast, we spent a long afternoon at the 9/11 Memorial, a hauntingly heart-breaking and harrowing museum to visit, which did an amazing job in walking the visitor through both the timeline as it unfurled on the day and the stories of great heroism and unbelievable tragedy.

Our week-long stay was a truly fantastic way to celebrate my 40th year and there is so much more that I’ll be sharing over the next few blog posts.

New Year Resolutions

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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Celebrating Christmas 2016

It may only be the second week of January, but Christmas already feels like a lifetime ago and the memories are already fading fast. December was yet again an interesting month for our family and whilst we had irrefutable success at keeping M out of hospital, we had enough other medical crises to more than meet our quota for the year. As I have already shared, December started with a huge scare about my remaining sight when I was incorrectly told that I needed urgent laser surgery to sort out the developing diabetic retinopathy in my right eye. The hugely positive outcome that in fact the diagnosis was wrong and no treatment was required was a massive relief, but those first 2 weeks of Christmas planning were overshadowed by the frightening threat of surgery that loomed over the household.

img_3185Our medical dramas didn’t stop there. Mike took a tumble from his bike back in October when he was cycling to our local train station on his way to work and has been complaining of severe pain in his left shoulder ever since. The initial thoughts were that he may have torn his rotator cuff and so was referred onto a physiotherapist who, as well as recommending a heady combination of co-codamol and naproxen to ease the inflammation and pain, made his own referral for an MRI to be done as soon as possible. Mike had that MRI at the start of December and by the middle of the month had received a letter stating that it looked like he had a possible “avulsion fracture of the greater tuberosity of the humerus“, but that it would need to be reviewed by a consultant to confirm diagnosis. That diagnosis has now been confirmed and further complicated by the onset of frozen shoulder, a common occurrence following this type of injury. Last week Mike was treated with a cortisone injection and is already beginning to feel some of the symptoms beginning to ease a little, though we have been told it could take a number of months for his shoulder to recover completely. He struggled with taking the co-codamol and a switch to Tramadol has helped massively there. Unfortunately, despite skipping a dose of the Tramadol so that he could enjoy a glass of something with Christmas lunch, the alcohol and painkiller combination didn’t really work and he spent a lot of Christmas Day asleep, which didn’t go down well with most of my family!

img_13241As for M, well he was looking forward to celebrating his big sister’s birthday at home with her for the first time in 3 years as well as taking part in all of the end-of-term Christmas activities being held at school. Unfortunately, once again his health took a nosedive as he came down with both ‘flu and tonsillitis during that last week and was really quite poorly for a few days. We knew he wasn’t well when he decided not to go to our local pantomime with us and instead stayed at home and in bed with my Mum for the evening. The necessary course of antibiotics took their toll on his system and we found ourselves taking a few steps back from our hard-won gains from the last few months. M has gone back to school recovered to generally good health and eager for the term ahead.

img_13361Despite these small hiccups to keep us on our toes, we celebrated the festive period in style. Christmas was spent with my family down in South Wales, where we were able to enjoy a refreshing walk around the nearby reservoir in fine Boxing Day tradition. Both children were thrilled with the presents they received and have been engrossed in listening to their new CDs – Olly Murs for G and Pentatonix for M – or reading their new books, as well as the inevitable time spent playing on the Wii U that was M’s main present. This last has proved to be a real opportunity for the children to work together and pool their resources as they were keen to buy a Disney Infinity starter pack with additional characters and spent a lot of time researching and budgeting before asking me to help them buy their final choices with their pocket-money. We’ve been ice-skating, saw New Year in with friends, managed a return visit to the pantomime so M could see it too, gone on walks and spent time together as a family. All in all, the perfect end to 2016.

Enjoying a little Olly Murs!

Enjoying a little Olly Murs!

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:

Indescribable fear

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.

Lest we forget 2016

They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.

– Robert Laurence Binyon

#Somme100 #wearehere #armisticeday #shroudsofthesomme

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