There’s something special about being able to celebrate* two milestones in my life on the same day. February 24 not only marks 46 years since I came into this world, but also 37 years of conquering an illness that could easily have seen it end if not for an awe-inspiring medical discovery in 1922.
The last year has seen a lot of changes for me in all aspects of my life. I was appointed as the Finance Director for the charity I’ve worked for over the last 3 and a half years or so, which has stretched me in ways I couldn’t have imagined, but has also been more fulfilling than I could have hoped. Working within the social care sector during a time of financial crisis following 2+ years of pandemic has been challenging, but the things I’ve learned and the friendships I’ve built at work have bolstered me during what could easily have been some mentally exhausting moments.
Both children – well, I say children, but really now one adult and one in their late teens – have started to explore and venture out onto the next steps in their lives and I’ve had to learn to balance wanting to solve all of their problems myself with allowing them to make their own mistakes and find their way through those challenges as best they can with our support as needed.
And my 37th year with T1D has seen another new technological development for me. Seven years ago I spoke about my introduction to the Freestyle Libre, the flash glucose monitoring system which turned me into the bionic woman and transformed the way I tested my blood glucose levels. Seven years on, my whole T1D life has been revolutionised once again as I’m now the proud owner of a “hybrid closed-loop system” or artificial pancreas, to use the vernacular, which allows my insulin pump to speak to the CGM (continuous glucose monitoring) I wear and adjust the steady administration of insulin to adapt to my changing blood sugars, activities and food intakes.
When that diagnosis happened on my 9th birthday, I’m not sure any of my family could have imagined the changes and developments that would happen to mean that I could spend a little less time focused on getting through each day with T1D in one piece and a little more on enjoying all that life has to offer.
Today will be a quiet day with family, enjoying time with my most favourite people in the world and loving the life I’m able to live with a new constant companion, my insulin pump, to help manage the one that’s been there for almost as long as I can remember. It is time to celebrate both of today’s occasions and I will certainly be raising a glass and a cupcake to do so.
*I thought long and hard about whether celebrate was the right word here or not. Should I have said that I “mark” these landmark points in my life rather than “celebrate” them, but I decided not. I do celebrate 37 years of living with T1D, of surviving all that it has thrown at me over the years and that is something to be proud of and that’s worth celebrating in style.
If there is one thing that Italy is famous for other than pizza and pasta, it has to be the incomparable gelato you can buy on pretty much every street corner or, if in Rome, at what feels like every third shop on the street. When your children have allergies, finding safe desserts is almost always the most difficult challenge when you eat out and even in Rome, was more of a challenge that we would have liked. Lots of shops do offer gluten-free cones or, of course, you can buy a scoop or two in a paper cup instead; and if you’re happy to eat fruity sorbets, then there are some great safe options to be had. Unfortunately, G is not a fan of the sharper flavours of a sorbet and at one point I did wonder if we might end up without trying this delicious Italian treat during our Roman sojourn. However, we did find a couple of gems and I had to share them with you:
Magnum Pleasure Store: We’d wandered past the Magnum Pleasure Store a couple of times on our way to and from our apartment and on one particularly scorching afternoon, we decided it was worth a shot to see if we could find a dairy-free option to help G and M cool down. They are both big fans of vegan Magnums here in the UK with G favouring the almond version over the plain vegan option that M enjoys. It seemed like a good starting point to find an ice-cream for us all, so it was disappointing to discover that there were no vegan ice-creams to be seen. They selected a cold drink instead whilst Mike chose the toppings for his designer magnum at the behest of both children – the speciality of the pleasure store.
I headed to the freezer to see what I could find and struck proverbial gold. They might not have stocked vegan magnums, but instead I stumbled across the fantastically named “Bikini 1969”, a gluten- and dairy-free ice-cream sandwich bar. Needless to say, both G and M were quick to take up my offer to try this treat – their first ice-cream sandwiches ever – and what a hit it was. We didn’t quite make it back there every day, but we did partake of an ice-cream from the Magnum pleasure store more than once during our stay.
Sublime Gelateria: This was another unexpected find during our time in Rome and one that we came across disappointingly late in our trip, especially given its proximity to where we were staying. Situated just a couple of doors down from Mama Eat Lab, M spotted this gelateria thanks to the duck-egg blue Vespa in the doorway and the brightly coloured sign next to its entrance stating it had vegan-friendly and gluten-free goodies inside. Having struggled our way through the impressive 3-course meal at Mama Eat Lab, none of us had space for a sneaky ice-cream, not even M, but we vowed to head back the following day and even managed a return visit as we headed back to the airport on our final day.
All of the ice-creams were clearly marked with the red scoops depicting those flavours that were safe for vegans and therefore for our dairy-free duo. What was fantastic was that there was a great mix of traditional ice-cream flavours, fruit sorbets and some more unusual ones for us to try and they all tantalised the taste-buds. I can’t quite remember all of the flavours we tried between us, but I know chocolate orange, fig, peach and lime were amongst them. Once again it was fantastic to see G and M experiencing being able to order a gluten-free cone filled with 2 scoops of their choice of an array of safe ice-cream flavours, something they’ve never been able to do before.
Our stay in Rome was relatively short and we were able to find some great places to eat safely and enjoy some delicious meals. As well as those mentioned in my last post, we also tried the restaurant that turned into our absolute favourite find of our Italian trip and somewhere we’d all happily go back to time and time again:
This small chain has 3 restaurants in Rome, one of which was Mama Eat Lab just a short walk from our Vatican City homebase. I can’t begin to tell you just how fantastic the food here is and I’ve no doubt that if we’d discovered it on day one, we may well have ended up eating there every day!
Mama Eat specialises in gluten- and lactose- free cooking and more or less every dish on the menu at our chosen location was safe for G and M to eat. Needless to say it simply had to be a 3-course meal, which was tough given we’d already enjoyed a delicious pasta lunch, but the whole family was up for the challenge. We took our time perusing the menu and were utterly spoilt for choice, so it wasn’t an easy decision to make.
Our final dinner choices included arancini, fried chicken, pizza and lasagne and was finished off with a shared dessert of mini doughnuts. It was great to see some gluten-free beers on the menu too and all-in-all it was one of the best dinners we’ve had whilst away from home. In fact, so good was the food that we headed back the next day for a late lunch when the queue was a little less lengthy, but the food equally delicious. The lunch menu is much, much smaller, but no less fantastic.
If you’re looking for somewhere that is allergy-friendly to eat with excellent Italian food, I would heartily recommend Mama Eat – we all gave it a 10/10!
After our week near Orvieto, we wended our way to Rome for the last few days of our holiday. I had done a smidgeon more research for our stay there, which uncovered one absolute cracker of a restaurant a mere stone’s throw from our apartment near the Vatican City. We enjoyed some great, safe meals elsewhere too, most of which we walked into from the street and were impressed by just how well catered for both G and M were:
: The one request we had on the drive from Orvieto to Rome was if we could find the Hard Rock Cafe in Rome for dinner during our stay. Whilst Mike and I were keen to find some more authentically Italian places to eat whilst we were there, it was an easy option for the our first evening in Rome and allowed us to fit in a little sightseeing as well as we found our way to the restaurant via the Spanish Steps and wandered past the Trevi Fountain on the return trip. After such a fantastic meal in HRC Florence, we had high hopes for a repeat performance at the Rome branch, but both children were disappointed with the quality of the gluten-free bread rolls being too dry to complement the rest of their meal.
: We wandered into this restaurant by mistake, but oh my goodness, what a success story it turned out to be. Less than 5 minutes from the Trevi Fountain, right in the heart of the tourist area, bustling and excellent service throughout the meal. There were so many safe options on the menu and M decided to take this first opportunity to try a traditionally Italian pizza. He started with a platter of smoked salmon and orange slices, followed by a Hawaiian pizza without cheese, whilst G chose a gluten-free spaghetti carbonara. Disappointingly there were no freefrom dessert options available that my 2 could eat, but after a delicious and filling meal, pudding wasn’t something any of us could realistically manage.
: Another knock-out walk-in win, this time for lunch in the Jewish Quarter. This was a relatively quick stop between our guided tour of the Colosseum and Roman Forum, and an afternoon visit to the Capitoline Museums. We found a street of welcoming restaurants and Mike did a quick scout of which could offer allergy-friendly options to our discerning duo. Most of them were able to serve gluten-free pasta even though it wasn’t clearly shown on the menus displayed outside the restaurants – a great demonstration of just how accommodating Italy can be, particularly to those who need to eat gluten-free. This time both children chose rigatoni – M with a tomato and basil sauce, whilst G again opted for a carbonara sauce. The portions were filling, but not too big, which was exactly what was needed to hit the spot in the middle of another hot day in Rome.
It has been quite some time since I lasted blogged and boy have those months been busy! Amongst other things we’ve celebrated a 16th birthday, survived the onslaught of BTEC and GCSE exams – as well as nearly all the results – some big changes at work and a performance in the West End by G and M. With so much going on, it’s been difficult to find time to put the proverbial pen to paper, but having just come back from an amazing 10 days in Italy, I was determined to find 5 minutes wherever I could to share our travel experiences.
Unusually, I didn’t do as much research on safe places to eat before we travelled as I have in the past, but having seen how well Italy accommodates those on special diets on our quick jaunt there a few years’ ago, I was hopeful we might have reasonable success. And so we did. With a little light touch internet searching on the ground to assist us, we found some amazing places to eat.
Our journey started in Pisa where we walked to see the Leaning Tower before heading for a quick pit-stop in Florence for lunch, and finally on to a beautiful farmhouse just outside Orvieto, where we spent the first week of our holiday. We didn’t eat out much whilst we were there, but the meals we did have were brilliant:
Hard Rock Cafe Florence: A holiday simply wouldn’t be a holiday without lunch at the local Hard Rock Cafe. I can’t say we go as far as planning our destinations around the HRC locations, but it is pretty much always one of the first things M asks about once he knows where we’re going. The Italian approach to allergy-friendly eating was a little different than we’re used to, with no separate menus, but we did have an extremely knowledgeable server who was able to tell both G and M if their selections were safe or not. G picked the BBQ pulled pork sandwich, whilst M chose a starter of chicken wings, followed by the grilled chicken sandwich. Their plates were cleared in the usual fashion when we eat at a HRC and I’m told that the gluten-free bread rolls were the best that they’ve eaten anywhere in the world.
Antica Cantina, Orvieto: Our base for the week, La Grande Quercia, was a fabulous farmhouse found on top of a hillside overlooking the cliff-top city of Orvieto and mid-week we decided to venture there for an explore and a lunch at the Antica Cantina restaurant. There were some great local specialities on the menu and M was delighted to learn that all of their pasta dishes could be made gluten- and dairy-free. The children started with a plate of parma ham and melon before G enjoyed a platter of goats’ cheeses with gluten-free bread and salad, and M selected the rigatoni with a tomato and smoked bacon sauce. Mike and I also chose regional dishes and we all very much enjoyed our first proper Italian meal out.
Trattoria del Buongusto, Marmore: Our one big day trip out was to the awe-inspiring Marmore Falls, the tallest man-made waterfall in the world. We spent our time exploring the various trails and climbing to get the most amazing views of all 3 tiers of the falls. We managed to buy a very basic hot dog lunch at the Falls themselves as there were no allergy-friendly options on offer, but our dinner at the nearby Trattoria del Buongusto more than made up for a somewhat scrappy lunch. Disappointingly they didn’t have any gluten-free pasta available the evening we were there, but our waitress was brilliant and helped translate the menu for us as well as letting us know which dishes could be prepared gluten- and dairy-free. This time G chose a cold meats and cheeses platter with salad and potatoes, whilst M feasted like a king on a mixed seafood platter starter followed by a mixed grill entree.
100 years to the day that the very first dose of insulin was administered at Toronto General Hospital to a 14 year old boy called Leonard Thompson, who was on the brink of what would have been a fatal diabetic coma.
That moment was revolutionary and from then on, life was never the same again for millions of people across the world.
Having discovered an effective treatment for diabetes, Frederick Banting, Charles Best and Dr James Collip were awarded the American patents for insulin in 1923, which they then sold to the University of Toronto for just $1 each. This life-saving treatment they gave away with no desire to sell it on for a profit, understanding how important their discovery was to all who live with diabetes and that it would no longer be the death sentence it always had been. Unbelievably today thousands worldwide, in both developed and developing countries, are unable to afford even a fraction of the insulin they need to not only keep them healthy, but keep them alive.
I’m forever grateful for this discovery and the generosity of those who developed it as without it I wouldn’t be here today, nearly 36 years since my T1D diagnosis.
This week I’ve managed to book a couple of those annual leave days off work and am celebrating a milestone anniversary from the comfort of my sofa, rather than at my desk. It doesn’t seem possible that today marks 35 years of living with what I previously described as my one constant companion in life, my Type 1 diabetes.
The last 35 years have unquestionably had their ups and downs as far my T1D is concerned. Amongst the ups was my move to using diabetes technology just before I marked 30 years with T1D, when I first tried out the Freestyle Libre and these days I can still be found with this small device attached to my arm. When I started with it, I made the financial decision to have 2 weeks on and 2 weeks off, but soon realised that I appreciated the ease of it more than expected and quickly determined that it was worth the investment of wearing it permanently. Five years on and I’ve finally had my sensors approved by the NHS and am able to get them through my monthly prescriptions, alongside my blood glucose testing strips, needles and insulin.
As for the downs, well, I’ve talked before about the loss of sight in my left eye following botched treatment for diabetic retinopathy many moons ago as well as the fear I faced when told that I urgently needed treatment in my right eye too in more recent times. Following a second opinion at that time I managed to avoid the treatment, but five years and many phone appointments with my consultant later, it was agreed that I needed some pre-emptive laser surgery to hopefully head off any further complications at the pass and so had it just before Christmas. It wasn’t the ideal time given the risks of heading into hospital during a pandemic, but the precautions taken were excellent and all went well. It did leave me with very blurred vision and sore eyes over the Christmas and New Year period, but I think I rocked the “sunglasses in December” look in style.
I don’t know what the next 1, 5 or even 35 years will bring in relation to my T1D, but I know it will no doubt continue the roller-coaster ride that I’ve been surfing since I was 9. The one thing I do know is that today there will be cake and bubbles and presents and a special dinner to celebrate – although that might be more to do with the fact that I’m also celebrating my birthday today and not just my diaversary!
This week has been a focus for raising awareness for 2 causes close to our hearts: National Eosinophil Awareness Week (NEAW) and Mental Health Awareness Week (MHAW). It somehow feels apt that these two go hand-in-hand this week as we have so often experienced first-hand how closely linked life with EGID is with the mental health well-being of all in our family. This year that is even more important as so many of us are struggling with the changes that the coronavirus lockdown has brought with it and none more so than the young people in our household.
National Eosinophil Awareness Week: We have been very active in raising awareness about eosinophilic diseases for a number of years, but decided to start taking a step back from that last year. Eosinophilic Colitis (EC) was the initial diagnosis that we received for M all those years ago from his consultant at GOSH, but in recent times, the diagnosis criteria for this condition have faltered and existing diagnoses have been actively questioned by many within the medical community. These days conditions such as mast cell activation syndrome (MCAS) have been bandied about in relation to M, but ultimately the root cause of his health problems still remains a mystery to us all. As I’ve said so many times, having a name to put to his health issues has helped us all, even when very little is known about it, and I continue to use both his original diagnosis of EC and the newer one of MCAS when filling in paperwork or talking about M with other people.
Despite our own uncertainty about whether EGID is the correct diagnosis for M or not, I will always continue to encourage and support the fundraising and awareness-raising efforts of organisations seeking to research and understand this family of conditions more. Lockdown maybe stopping us doing anything active to raise awareness this week as we have in the past, but it’s good to be able to do my bit even from within the constraints of my own home.
Mental Health Awareness Week: Mental health well-being has been a buzz word in our household for a number of years and never has that been more important than now as we see the impact of 9 weeks in lockdown on us all. I’m a happy introvert, who enjoys spending time in my own company and so, in many ways, lockdown life is suiting me quite well. Regular contact with my work colleagues through Zoom and conference calls, webinars and online catch-ups with other friends is keeping me in touch with the outside world, which is especially important at a time when my T1D is keeping me at home.
However, I see a greater effect on Mike and the children and I think a lot of that is due to the changes to their daily routines. I am still working 9-5 every weekday, albeit from home and more often 8-7, but the 3 of them are going through a very different experience to me. Mike was furloughed from his job as a chartered surveyor on 1 April and for someone who is very used to being out and about as he values or surveys properties every day, the restriction of staying at home has been difficult. He is also much more of a social bug than I am, so not having daily face-to-face time with anyone other than the children and me has also taken its toll. However, that being said, the online capability to chat to family and friends across the world is something he has definitely embraced, even taking part in his regular whiskey-tasting evening via Zoom the other night!
As for the children, well G and M are almost a perfect reflection of Mike and me. G is comfortable entertaining herself and being in her own company, whereas M thrives on spending time with his peers as well as being constantly active and mentally challenged by them. Both have found lockdown difficult and we have worked, and continue to work, hard together to find the best outlet for their emotions as well as effective ways to meet their social needs. Chatting on WhatsApp or connecting via the PS4 has been a good solution and both are also having tutoring sessions via Zoom or MS Teams every week. This connection with people from outside of the family has been key to giving them something that is a very faint semblance of what they’re used to experiencing daily. Keeping them in a routine has also been important as Mike and I are very conscious that their return to school in September, after the best part of 6 months home-schooling, will exhaust them physically, mentally and emotionally from the minute they step through the school doors, if not before.
The buzzword for MHAW has been Kindness and considering what random acts of kindness you can do for others has been much encouraged. However, I think it’s key to remember that, whilst showing kindness to others in all situations is important, so is showing kindness to ourselves. We truly are living through extraordinary times and we shouldn’t feel guilty if we are not coping as well as we perhaps believe we should. Be that by taking some time to do something we love to do as an individual – bubble bath anyone? – or spending time relaxing with our family or even reaching out to a friend because we just need to talk, being kind to ourselves will improve our own well-being, which is something we all need right now.
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
Nothing brightens up a gloomy day like a beautiful sunflower. Tall, majestic and reaching for the sun, its bright yellow colour is sure to cheer up even the darkest of moments. There really is just something intrinsically cheery about this flower to my mind; but did you know just how powerful sunflowers can be?
I am, of course, not talking about the flower itself, but rather the incredible Hidden Disabilities Sunflower scheme, launched in 2016 in response to a query from Gatwick Airport as to how to better its help to travellers passing through its doors and since adopted by numerous airports, supermarkets and other stores and businesses across the UK as well as slowly being recognised worldwide. The scheme uses bright green lanyards covered with sunflowers to indicate that the wearer has a hidden disability and therefore might need additional support, time or space to use that particular facility. All done in a subtle yet visible way.
We hadn’t engaged with the sunflower scheme previously, but given G’s recent challenges with panic attacks and anxiety as well as M’s ongoing health issues and his own anxieties when it comes to travelling with his medicines and foods, the time finally seemed right to give the sunflower lanyards a go during our Christmas trip to New York. I requested them through the Heathrow airport website and was delighted with how promptly they arrived with us with no hassle. They formed a part of the big reveal on Christmas day and both children were wonderfully willing to wear them as we travelled with G having to be reminded to remove hers once we reached our hotel in NYC.
The support given throughout the airport was fantastic and extremely thoughtfully and carefully given. The Virgin Atlantic staff at check-in approached Mike and I to see what additional help we might need, but didn’t ask questions in front of either G or M. Our journey through security was remarkably easy as the airport security staff opened a new lane for us to go through without comment and were then careful to minimise the examination of M’s medicines and the food that we were having to carry with us. I was impressed with just how well all the staff working at Heathrow appeared to have been trained and how they offered us help and support without making a fuss.
The only problem encountered was that M found the material of the lanyard uncomfortable to wear, complaining it irritated his neck, so instead I attached it to his backpack, which made it less easy to spot on a first glance. I’m sure that he will not be the only person who will struggle with this because of sensory issues and so was glad to be able to give some constructive feedback to what is otherwise a fantastic scheme. Our sunflowers were unquestionably powerful during our Boxing Day adventures and will no doubt be something we make use of again the next time we travel.
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