Tag Archives: diabetes

The 7Y2D COVID-19 Diaries – Week One

Without a shadow of a doubt, the world as we have known it has changed radically in the first 3 months of 2020. The fast spread of the COVID-19 virus not just through Wuhan, China, but worldwide has shocked us all and we find ourselves living in extraordinary times. Times that go far beyond the much-fabled “interesting times” often quoted as an ancient Chinese curse*. Life will never go back to the way it used to be for most of us, if not all and so we have to search for our normal despite not really knowing when things will start to be more “normal” once again.

Our first week at home was mostly a good one.

G and M continue with their home studies, though some days with more dedication and, let’s be honest, success than others. They’re keeping up with the extra courses they’ve both signed up to as well and we’ve found additional activities to keep them busy. G has been using the Diversity online tutorials to hone some more dance skills thanks to their 20DV website and I’ve signed M up for online tutorials for his bass guitar through Fender. Stagecoach Performing Arts has also provided some at-home online learning videos, which helps break up what can be long days.

My 12 weeks working from home is off to a good start with all finance and banking systems working well on our home wifi. There are daily conference calls with the rest of the senior management, sometimes via Zoom, to review the situation across our charity and track the progression of COVID-19 through both our staff and the individuals we support in our homes. I’ve also scheduled weekly catch-up sessions with the other members of our finance teams to make sure they are all coping okay with their new work situation. Keeping an eye on the mental well-being of all my staff is critical in times like these and they have my phone number to be able to call or WhatsApp whenever they need.

It has taken a new level of cooperation and adaption for us all. Mike is used to working from home on his own. He takes to his study in the morning, may reappear for drinks or food and then disappears again until his day is finished. M and G each have work stations set up in our dining room and manage to avoid conflict by being plugged into their own devices as they study. I have set up on the 1 remaining downstairs in the kitchen, which works brilliantly for me as I have ready access to the kettle, but can prove challenging to the rest of the family when they look to escape to the garden or make their lunch.

The last week has been filled with rainbows, working from home and trying to convince 2 increasingly grumpy teens to keep going with their own home studies…and I think we just about managed to do it all.

*There is no clear evidence that the curse “May you live in interesting times” is in fact either ancient or Chinese. It is purported to have come into more common parlance in the early 1900s, in all likelihood in the UK thanks to Sir Austen Chamberlain, brother of UK PM Sir Neville Chamberlain. You can find a good explanation of this origin here. Chinese or not, it is now widely accepted to mean times of trouble, rather than of peace,

What does COVID-19 mean for you

I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

#FFFA20 Confectionery

Now, I fully accept that there may be some of you out there wondering what on earth a PWD* is doing even considering judging a category at the #FFFA20 called “Confectionery”, but let me assure you, it means that I don’t tend to over-indulge in the first few mouthfuls and with 35 entries in total – 32 of which were chocolate-based – that’s definitely a good thing! On a more serious note, my Freestyle Libre gives me the opportunity to have tight control on my blood sugars at all times and helped me keep things on an even keel that afternoon.

 

I love judging this category as I have 2 food-allergic children who enjoy the occasional sweet treat and it’s always a great opportunity to find something new to tickle their taste-buds. After a busy morning trying the delights of “Meaty and Fishy Ready Meals” and a wonderfully refreshing light lunch prepared by Michelle and her #FFFA team, we were ready and set for the challenge ahead. And believe me when I tell you that tasting and judging so many sweet entries really can present some problems, especially when trying to give constructive comments to the 3rd dairy-free dark chocolate in a row!

These were my highlights:

M&S Fizzy Dinosaurs: In a category that was dominated with chocolate offerings, it was great to find these sweet treats. It took a while for us to realise that M reacts to gelatine, so we are always delighted to find sweets that are gelatine-free and delicious. He and I both love sour, tangy, fizzy sweets, so I knew the moment I tried these dinosaurs that they would be a big hit with my youngest…and the speed with which the bag I took home with me disappeared would absolutely support that!

Truffle Pig Truffles: We tried several truffle selections on the day, and these stood out from the crowd with their wonderful Butter Nut variety, which was perfectly reminiscent of their more well-known dairy counterpart, Ferrero Roche. The peanut butter content obviously means these are not safe for those with nut allergies and disappointingly to me, even though they are vegan and delicious, they are not soya-free either. A great treat that would be a brilliant gift and make the recipient feel truly spoiled, but not one for our household yet.

My Sweet Chickpea: The surprise success story of the day for me, and one that has proved to be popular at home too. There were 2 flavours that we were lucky enough to try: cappuccino and coconut, and both were delicious. The chickpea was not at all detectable, something which I tried out and proved with G, who was surprised to learn it was a key ingredient. Dairy-free, soya-free, hidden chickpeas and snack-size – what isn’t there to like about these?!

Moo-free Sea Salt & Lime Chocolate: I am not the biggest fan of anything salty and I definitely do not like caramel, so the whole “sea salt and caramel” revolution has passed me by, even though I’ve successfully created a safe version for G and M. So, I was intrigued by the lime and sea salt flavour offered by Moo-free and this will probably have me raving for weeks about it. A perfect balance to the sweetness of chocolate and very definitely more-ish. This is my winner of the day, not least because it was one of the few chocolates that was both dairy- and soya-free.

All in all, it was a great day of judging with lots of memorable products and not too many that completely missed the mark for me this year. The final award winners will be announced on 28th April, so keep an eye on your social media to find out who won those much-coveted golds.

*Person With Diabetes

World Mental Health Day 2019

When I realised that this year’s World Mental Health Day was focusing on the subject of suicide and suicide prevention, I paused. I wasn’t sure that this was an area that I could write about knowledgeably and, in fact, even as I write this blog post now, I’ve got a constant thought in the back of my mind that it could be just as easy to press “delete” as it would be to press “publish” when I’ve reached the end of my musings.

I’ll be honest, suicide is not a tragedy that we’ve had to deal with firsthand. I know friends and colleagues whose families have been shaken to their very core because of the unexpected and sudden death of a loved one, but I can’t pretend to understand just how difficult it is to come to terms with that death, deal with the impact of it or find a way to somehow carry on with life “as normal”.

Can I understand what leads someone to believe that death is the only answer to their problems? Possibly.

I’ve never been in the position to feel that there is no other escape, but my own experiences with depression over the years due to my T1D, following the traumatic birth of M and the massive mental health impact of workplace bullying do perhaps give me a slight glimpse of how frighteningly easy it is to spiral downwards into the darkest of places and not know how to climb back out of that hole. Sadly, it’s been a truth we’ve also had to face with M in times when he has struggled to come to terms with the reality of his chronic illness and all the consequences that come with that; and we’ve watched G battle to overcome the challenges of having a sibling with health challenges. I’ve written about these experiences and how they’ve affected me, G and M many times and you can find those posts through searching “mental health” or “bullying” on my blog.

Today I saw this image posted on social media by our local NICU ward, a place I know well after the births of both G and M, and it perfectly encapsulates everything we should be teaching our young people about their own mental health: that no emotion should ever be considered to be wrong and, most importantly, that it’s okay to not feel okay.

Be my Valentine…and #SpareARose

How did your day start today? With a card, chocolates or maybe a bunch of flowers? A promise for dinner tonight? Or maybe tonight will just be a quiet night in front of the TV.

You can’t have missed that it’s Valentine’s Day today and you may, or may not, be celebrating it.

Whatever your plans, could you please do just one more thing?

By gifting the price of one single rose (£4) to Life for a Child, you will be helping the Diabetes community to “take care of one another around the world” and giving one month’s supply of life-saving insulin to child living with T1D in an under-resourced country.

It really is that easy and what a wonderful gift to share with your loved one this year.

Happy Valentine’s Day!

Grief

We’re almost at the end of term and not just that, but also the end of the school year. As I said in my last blog post, it’s been a time of reflection about M’s health and his first year at secondary school as well as an opportunity to draw breath before we head into the chaos of a busy summer and swiftly followed by the start of G’s GCSE studies. Following the challenging start to 2018, when both Mike and M came down with a nasty bout of Aussie ‘flu, life continued to be incredibly difficult and the saddest of circumstances meant that my birthday, M’s birthday and the 5th anniversary of this blog passed quietly and with far less recognition than would normally be the case. I’ve sat down so many times to try and find the words that could even begin to explain my extended absence from my blog, but it felt for the longest time as if my creative well had run dry and only now am I beginning to emerge from the other side of a deep, dark hole.

Just a couple of days before my birthday, I received a message to say that my Uncle had been taken ill and rushed overnight to ITU. There was no question of my next move when I received that news and fortunately Mike was working from home that day, which allowed me to get home, pack a bag and drive to South Wales to stay with my Aunt for as long as I needed to be there. We were both extremely lucky to be working for understanding employers, which enabled us to adjust our working arrangements and commitments to accommodate the needs of all concerned, most especially G and M. Whilst this sudden downturn in health came as something of a shock, we had actually visited them both the previous weekend when my Uncle was first admitted to their local A&E with a stubborn chest infection that refused to go away. It wasn’t quite the visit we had had in mind, but now we are all so glad that we had the opportunity to spend a little time with him, laughing, sharing news from work and school and that the children could create memories that will stay with them for a lifetime. There are hopefully no regrets that they didn’t have time to come to say a final goodbye as they had that precious time with him before he was taken so ill.

Sadly, despite all our hopes and prayers, there was no coming back from the sepsis that had taken hold so unexpectedly and just a few days later I sat by his bedside with my Aunt, his sister and other niece as he passed away. He was just 63 and had been fighting MS, T2D and other health complications over the last 20 years, but this last battle was just too much for him to win. Mike continued to hold the fort at home, whilst I did all that I could to support my family in both places. The children have grieved in vastly different ways, just as we adults have experienced and dealt with our grief in our own ways and there have been no easy answers or quick-fix solutions in helping them cope with this, their first real experience of death.

My Uncle was, in many ways, a step-in Granddad for both G and M as my Dad passed away 14 years ago this year; and they both had a very close relationship with him. G has grieved quietly, keeping much to herself, whilst M has shed many more tears and been more open in showing his loss. Never was this so clear than on the day of the funeral itself, when G’s only wobble came as the hearse pulled up outside the house and we took our places in the cars. I was travelling with the women of the family, whilst G and M were both due to be travelling with Mike. It was at that point that G’s eyes filled with tears and we walked hand-in-hand to the car, allowing her some time to look at the flowers with the coffin before she travelled on to the crematorium.

In complete contrast, M was happy to travel with Mike and G, but as soon as we all arrived and it was time to go into the service, the tears started coursing down his cheeks and didn’t let up until long after the service had ended. The days since the funeral have had their ups and downs as you’d expect. In recent days, we’ve been able to talk openly about why their beloved Uncle was taken ill and died and they’ve had the confidence to ask us challenging questions, fully expecting us to be honest in our replies. I never really thought twice about whether they would attend the funeral or not, though we did give them the opportunity to say no if they really didn’t want to go, but they both wanted to have the chance to say their goodbyes and I’m glad that they did.

Devastatingly, this was the start of a tragic 6-week period for Mike and me. Just 2 days after my Uncle’s funeral, we found out that a close friend who we have known since Mike first met her over 20 years ago in Canada had passed away suddenly. She had emigrated to less than 20 miles away from us here in the UK with her family a few years ago and Mike and she regularly chatted on the phone. Jenn had turned 42 at the start of February, just 8 months older than Mike and a year older than me, and her 2 children are more or less the same age as G and M. Her sudden death hit us both hard and left us reflecting on just how fragile life can be.

Not long after we heard the devastating news about Jenn, Mike voiced out loud that one thought that had been playing in the background for us both – who would be the third? His throwaway comment was that he hoped a celebrity death would count and there have certainly been enough of those over recent months to more than count as our third. Unbelievably however, it seemed destined that we would be hit by a third death much closer to home and on Maundy Thursday one of my cousins got in touch to tell me that my 99 year-old Gran had passed away quietly at home that evening. Whilst we weren’t expecting this news then, she had lived a long and full life with 5 children including my Dad, 10 grandchildren, more great-grandchildren than I’m confident to count and even the odd great-great-grandchild. I spoke to my Uncle the day after, who was able to share with me that she passed quickly and peacefully at home in her chair.

It comes as no real surprise that death was a topic of conversation that peppered our Easter holidays as both G and M expressed their thoughts, questions and feelings about it and as we all dealt with our grief as best we could. The children were not as affected by their Great-Gran’s death as they were by that of their Great-Uncle as she hasn’t been more that a name at the bottom of a birthday or Christmas card for a few years. They understood that, whilst they didn’t feel particularly sad, I was and gave hugs and kisses whenever they thought I needed them. Helping our children to cope with death and grief both in the immediate, but also as it revisits at the least expected times has been an incredible parenting challenge. Death is sadly very much a part of life that has to be faced and I hope that we have given G and M the life skills to deal with their grief and to empathise with others struggling with it.

#NEAW2018: U is for Unite

May 22: U is for Unite

Over the years, our primary focus for “unite” has been on spending the week, or a part thereof, “Eating like M“. Mike and I are embracing it fully again this year, much to M’s delight, but I have to wonder whether following his restricted diet for 7 days really does enough to show him that we’re standing in unity alongside him. A natural consequence of our choice is that those we work and spend time with during this week will inevitably ask questions, which obviously gives us both a great opportunity to talk about EGID and start to educate the uninitiated, but I keep returning to the question of whether M truly feels a benefit from us standing shoulder to shoulder with him for such a short time.

Of course, the truth is that, for us, every day living with EGID, even though we are not living with the diagnosis and reality of it ourselves, is a day spent supporting M through what has been some of the toughest times he’s had to face in his 12 years. We have lived through and survived the most difficult challenges, but we are still not really living in unison with him. My 30+ years of living with my own chronic illness, Type 1 diabetes, means that I do perhaps have more of an idea of the experiences and angst that he faces each day than others and I know that that truth has brought M some comfort in his darkest moments. I can’t make EGID disappear, or allow him to eat completely normally once again – or, at least, not without some pretty catastrophic reactions that would take their toll and require a huge amount of time to recover from – but I can offer a level of understanding and empathy to him, along with an ever-ready cuddle, kiss and encouraging words from Mum, which may or may not be gratefully received depending on the occasion.

This week, social media, and Facebook in particular, is swamped with the CURED banner for NEAW, which promotes worldwide unity in the EGID community, with all of those living with EGID holding hands and pulling together to seek a cure. It is an image that has resonated with me, especially given the ongoing tumultuous relationship between EGID and the medical profession here in the UK.  Despite M’s objections to the word CURED (which actually stands for the Campaign Urging Research for Eosinophilic Disease) because, as he rightly points out, “…there isn’t a cure yet for EGID and this makes it seem as if there is…“, he too is a fan of the sense of inclusion rather than isolation that is reflected in the words. The realisation that EGID affects others just like him across the world is sinking in and we all find some comfort in the truth that other countries are investing in the area of gastro research, which includes seeking a deeper understanding about EGID and how it works.

Whether its eating like M this week, or sharing the same meals with him at different times throughout the year; supporting M when life isn’t going as smoothly as it could, or cheering him on when he’s talking EGID to those around him; or actively helping both him and G when they’re fundraising for the charities that have worked tirelessly to support them over the years, all of it is standing in unison with M during NEAW and for the rest of the year. Because unity is not just for a day or a week or even a year, but it’s for a lifetime and it’s a commitment I’m willing to make to the EGID community, not just to him.

The question is, are you?

All Different, All Equal

This week is Anti-bullying week and this year the campaign has adopted the tagline “All different, All equal” to promote difference and equality in schools. As the Anti-bullying Alliance’s website states, the idea behind this is to “…help children and young people celebrate what makes them, and others, unique and help them understand why it’s important that every child feels included in school able to be themselves without fear of bullying...” This has struck a particularly resonant chord with me as feeling different to classmates is something that not only do I recall from my own school days, but something I am aware both G and M have felt over the years.

For me, and let me be brutally honest right now, I hated every moment of living with T1D as a teen. Not only was I having to deal with the challenges of impending adulthood and puberty like all of my peers, but my T1D added another layer to the emotional mix that I really didn’t want to have to face. At school I felt like the odd man out. I didn’t really know anyone else my age with T1D and I was the first diabetic in my school. I suffered extreme teenage angst about not being able to buy sweets and chocolate from the break-time tuck shop and that seemingly small thing became a massive problem that I struggled to overcome. My friends accepted my differences far more readily than I did and yet I felt alienated from them. My own anxieties and poor self-image became mountains I just couldn’t scale, particularly when some of the other girls in my school year began to exclude me from friendships that had been there since I was little and threw cruel words in my direction which hit incredibly deep.  Whether they had truly identified my lack of self-esteem as an easy target for their unkind comments and actions or not, I can still recall just how devastating that time in my life was for me. I’m sure that I was not on my own with those feelings, but I felt isolated in a world that seemed to be quite happy without me.

Sadly, G struggled similarly during her Infant school years when so-called friends who had helped ease her move to a new school, discovered that her health issues could be used as a taunt against her and caused her unbelievable emotional pain. Thanks to a fantastic and supportive Year 2 teacher, G was encouraged to tackle the bullies and their behaviour head-on and she learned to stand up for herself, something I didn’t learn until I was much, much older. I know that her gluten- and dairy-free diet still makes her feel too different to the rest of her tutor group for comfort and she has struggled with sticking to the restrictions, especially when her friends are enjoying treats that she would love to be able to eat. We’ve worked to fill her lunchbox with foods and snacks that make her feel a little more “normal” and a part of the crowd, and I will continue to hope that this doesn’t become a cause for bullying as she moves her way through secondary school.

Likewise, M’s complex medical needs have left him being subjected to cruel words and unkind actions in the past, something that is not unusual in the world of chronic illness. Whether it is an obvious physical difference, or something more hidden like T1D or allergies, the sad truth is that children can, and will, be cruel. All children are fighting to find their place in the world and will look to find their footing without regard for those surrounding them and especially not for their feelings. As parents we need to teach our children about the beauty in diversity and encourage them to be kind in their thoughts and deeds. My children are wonderfully unique as are their friends and that is something to embrace wholeheartedly and without reservation. This year I will be making sure that they understand the truth in these words: All different, all equal.

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.

treatment-questions-quote

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.

The impact of mental health

In a world that is frighteningly open as people regularly share their location, activities and even the contents of their lunch box via social media, there is still a huge reluctance to linger on anything that hints at emotional instability or mental distress; but the sad truth is that matters of mental health are a huge part of living with a chronic illness and not just for the individual concerned. Today is World Mental Health Day, a day that is seeking to raise awareness of mental health conditions in an open and honest way, to encourage individuals to understand more about how these problems can affect just about anyone at one time or another in their lives and how others can support them. There is a tendency to make light of the language used when referring to mental health issues, after all, how many times have we heard someone say that they’re feeling depressed about having to go back to work after a holiday or the break-up of a particular pop group1-in-6-wmhd, when what they really mean is that such events have saddened or upset them rather than the total immobilisation that comes when you struggle with depression on a daily basis. I am not devaluing the emotions they may be experiencing when those things happen, but are they really akin to the overwhelming nature of depression? I think not.

I don’t speak lightly as I have been dealing with the constant presence of recurring depression since my teenage years. I know what that “black dog” is like and just how much it can impact on your ability to function on a day-to-day basis in the real world. As a teenager living with T1D, I struggled with accepting that this was a reality that was never going to change for me, that the need for regular injections, sensible eating and facing the risk of serious complications was never going to disappear. I didn’t handle it well. Though few of my peers may have realised it at the time, I refused to do what I needed to do to maintain my health, not because I wanted to cause myself problems, but because I couldn’t see a way to live like my friends and not feel isolated by my T1D diagnosis. I know that I was not alone in my reaction to my chronic illness and my family and I owe a great deal to my fantastic consultant who worked hard to help minimise what often felt like insurmountable differences as I went through those troubled years. With time and support, untitledI did eventually come to terms with my diagnosis, though sadly my determination to get my T1D control back on an even keel brought with it an unexpected complication with my eyes, which in turn has led to even more serious implications than I could ever have imagined when I was 13 and feeling very much on my own in a battle against the rest of the outside world.

Move forward a few years and I found myself back in the mental health fight when I was diagnosed with post-natal depression following the difficult pregnancy and early arrival of M. This time I was more open to receiving help and my diagnosis, when it came, proved a huge relief as I didn’t have to actively speak out and ask for that support. Having struggled with counselling as a sole answer to my depression as a teenager, I readily accepted the suggestion from my GP that I be prescribed with low-level anti-depressants for the first few months and am not ashamed to say that those helped me through some very dark times indeed. Anti-depressants are not for everyone, just as much as counselling hasn’t always proved to be a success for me. There should be no stigma attached to needing that medicine to survive the battering of a mental health problem. It is a necessity for some, just as insulin keeps me alive or a feeding tube and elemental feed proved to be what M needed to help him regain better health.

I have learned over the years to identify when I start to feel a little low and my ability to cope with the everyday becomes more of a strain. Mike and my Mum have developed their own sixth sense to pick up when I am beginning to struggle and offer me their unfailing support as I try to find my way back out of the pit. Our 7 year journey to get an initial diagnosis for M and the ongoing challenges in keeping him fit and well have taken their toll and there have been times when tempers are frayed and relationships fractured because of it. 1-in-3-traumatic-event-wmhdThat strong support network of family and friends who are constantly surrounding me is invaluable and the knowledge of what is really important – M and G – keeps me getting out from under the duvet every morning and making my way through each day.

Even more importantly, my own experiences with chronic illness mean that I am well-tuned to the impact that his own diagnosis will have on M. It is a frightening reality to face that your own child might end up fighting the same demons that you did at that age, but it also gives me an insight that lends a level of trust and understanding between M and me that is unlike the relationship he has with anyone else. I can fully empathise when life seems unfair and unjust and he can allow his emotions to pour out because he believes that I get it. We have long been arguing for psychological support for M and finally, thanks to a developing shared care relationship with our local hospital, that seems to be being put in place. Our new gastro consultant has fully acknowledged that the EGID diagnosis will have not only shaped the person M has become, but also had an effect on G and on our family dynamics. He wants to adopt a holistic approach to treating M and the next few weeks will tell if that is a solution that will make a significant difference going forward. I know that recognising the signs of mental stress now are really important when it comes to M’s ongoing mental health, especially as there can be no denying that he already struggles with mood swings, anxiety and feelings of isolation, not just due to his EGID, but also because of his dyslexia and dyspraxia. Early recognition of those symptoms will help us and the medical professionals find a way to put into place coping mechanisms that will serve him, not just now, but into his adulthood too. He already has a good cohort of friends surrounding and looking for him, but they are young, only 10 years old. Just as with any other child as they grow up, he will learn to distinguish those who will stand by him through thick and thin and those who are just there for the fun times. Most importantly to me, 70300is that he doesn’t feel ashamed or embarrassed by the times when he’s not able to cope emotionally, or mentally, or even physically with the pressures that his diagnoses will have on his life, and that he learns to openly acknowledge them; and that he realises that he’s not on his own in that regard.

Likewise, we can’t ignore the reality that having a chronically ill sibling has a massive impact on G and her mental health too. The Young Carers meetings that she has attended over the last few months have covered the areas of anxiety, facing fears and anger management, which are all inextricably tied up with the role of being a young person caring for another. Those sessions have taught her strategies for dealing with her yo-yoing emotions and provide an outlet for them in a safe and understanding environment. She has made stress balls and relaxation jars to bring home and use as she needs. I hope that the proposed psychology appointments at our local will not only look to support M, but also to help G in her own right as well as us as a family. These are all things you don’t want to even consider that your children might ever need to deal with, but there is no escaping the reality of chronic illness and mental health, and we need to accept our responsibility to help them both. That is the key message of today’s World Mental Health Day – that we all have a role to play in supporting those around us as best we possibly can.black-dog-step-on-you