Tag Archives: Conditions and Diseases

When 37 is the new 46

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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.

Eating Out with Allergies in Rome: Dessert Edition

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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.

Eating Out with Allergies in Rome: Mama Eat

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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:

Mama Eat

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!

Eating Out with Allergies in Rome

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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:

Hard Rock Cafe Rome

: 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.

Il Nuovo Faro

: 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.

La Taverna del Ghetto

: 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.

Eating Out with Allergies in Umbria

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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.

Enjoying the best of the Lakes – Part Two

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When I said that the second half of our week’s holiday was just as busy as the first in last week’s blog, I wasn’t joking. Everyday saw us exploring a new corner of the Lake District in a myriad of different ways:

Borrowdale Valley: Our walk here was inspired by an article I had read about the so-called “Borrowdale Banksy” and a desire to see if we could find one of these stunning pieces of art whilst we walked the hills. Sadly we didn’t manage to uncover the location, which is a something of a secret, but we did find some stunning views and had the chance to climb the most spectacular hill of slate to look out over Derwentwater. It was a challenging walk, but we had a glorious day for our trek around the loop.

West Lake Adventures: During our visit to Lake Windermere, G and M spotted several people paddle-boarding and kayaking on the lake and asked if we could squeeze a similar excursion into our week for them. We hadn’t previously booked it, so were a little sceptical about what we might find, but were lucky to come across West Lake Adventures who offered a 2-3 hour kayaking session on the much quieter Wastwater. Wastwater can be found at the foot of Scafell Pike, which meant some absolutely amazing photos of both children and Mike kayaking with a simply jaw-dropping backdrop.

Whinlatter Forest: When G said she’d love to horse-ride whilst we were away, M made it equally clear that that wasn’t something he wanted to do and so we looked for an alternative adventure for him for a different day. The answer was a forest segway trail with Go Ape at Whinlatter Forest. Whilst the boys tackled the trail, G and I headed off on a search for the Gruffalo, which led us to a most perfectly positioned picnic area looking out over Derwentwater, somewhere we returned to with Mike and M to enjoy our lunch. We were very impressed by the cafe here too as it served the most amazing allergy-friendly sandwiches and ice-creams, something that came in very handy when we realised that Mike had left the children’s packed lunch in the fridge back at Brockwood Hall.

Morecambe Bay: Our final stop as we began our homeward journey, and one I insisted on, was at the delightful seaside town of Morecambe Bay. Of course best known for it’s iconic statue of classic British comedian Eric Morecambe, Morecambe Bay is more than just this depiction of its most famous son. We had perhaps the best weather of our whole trip as we strolled along the prom and walked out along the stone jetty to gaze back at the peaks that had been our home for the last week. Charming in every regard and the perfect ending to a truly stupendous holiday.

Eating Out with Allergies in the Lake District

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I have to confess that I didn’t do as much research into allergy-friendly restaurants for our stay in the Lake District as I would normally do when we travel. Part of that was that I wasn’t really sure how comfortable I would be in eating out during the week as the COVID restrictions have lifted and knew that we could take advantage of our self-catering lodge for our meals if we wanted, albeit that would mean not as much of a holiday as I would perhaps have liked. However, despite my unusual lack of planning in advance, we found some wonderful places to eat that were more than able to accommodate the various dietary requirements for us all:

Bentley’s Fish and Chips, Blackpool: I mentioned this wonderful chip shop in last week’s blog, but absolutely felt it needed including in my round-up of our allergy-friendly eateries. They boasted a dedicated gluten-free fryer for the fish and chips and the portions were more than large enough to satisfy the appetite of the teenage M for at least an hour or so! I enjoyed the scampi, whilst Mike added battered haggis to his order, and although neither of these were gluten-free, they were delicious.

The Punch Bowl Inn, Millom: This was an unexpected find less than 10 minutes away from our base for the week and we were so impressed by their offerings on the Saturday night, that we booked to go again the following Wednesday. They change their menu on a weekly basis, always making sure to include some new allergy-friendly options alongside the regular gammon and steak offerings. G and M chose the gammon and chips, which again were generously portioned and a big hit with both children. Mike tried their allergy-friendly king prawn curry on the Wednesday, which also got a good review.

Vinegar Jones, Bowness-on-Windermere: There’s nothing better than spotting a place that’s keen to advertise their allergy-friendly options and Vinegar Jones’ large window display stating that they serve gluten-free fish and chips daily absolutely did that. Obviously a popular destination in Bowness-on-Windermere, we joined the lengthy line that was queuing along the pavement and kept our fingers crossed that it could meet the requirements of my discerning duo. Given it’s presence on this list, it’s perhaps needless to state that it was another resounding success and somewhere I’d be more than happy to recommend to anyone visiting the area.

The Flying Pig Pub, Bowness-on-Windermere: This was an unexpected late addition and not somewhere we had planned to eat at all. M had spotted swordfish on the menu at the nearby Hyltons restaurant whilst we were waiting for our food to be cooked at Vinegar Jones and asked if we could pop back on another evening. We hadn’t really expected to have the time, but a quicker than anticipated visit to Keswick meant that we had time to head back to Bowness, only to find the restaurant in question closed for the evening. Instead, we found the Flying Pig Pub, which proved to be a reasonable replacement, although they didn’t offer swordfish much to M’s disappointment. G once again plumped for the gammon and chips, whilst M tried the chargrilled steak burger without the cheese. Both were happy with their meals and I certainly enjoyed the moules marinière with fresh bread.

 

Re-opening the World – 7Y2D COVID-19 Diaries Week 15

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How has the easing of lockdown affected you and your family? Have you gone back to life as it was pre-lockdown, are you still following strict social distancing or shielding rules, or are you slowly working towards finding your feet in your new normal?

The last few days have been interesting ones for me as I’ve started to receive phone-calls from local services and businesses as they begin to re-open their doors and are keen to get people in after months of self-isolation. I’m sure there are those that will think I’m being overly cautious, but my answer to each of those enquiries has been simple: thank you, but no thank you, not at the moment. Having strictly restricted my movements over the last 15 weeks, I’m not in any rush to get back to the way things were before lockdown happened and will be keenly watching to see what happens over the next few weeks, particularly as pubs and restaurants reopen this weekend as well as some other businesses.

We’ve also been prepping to make sure we have everything we need as we do start to move towards relaxing our own version of lockdown. Despite the reluctance of the UK government to mandate the wearing of face masks or coverings when out and about in England, we have discussed the importance of them with G and M and agreed that the whole family will be wearing them once we start to venture further afield. Mike is already wearing a mask daily as he travels for his work and M has independently decided that he will wear his when he goes into school next week for an hour-long “keeping in touch” session before the end of the school year.

Both children had input into the face masks that they wanted to have and are happy to wear them when needed. We knew that having their buy-in was important, not least because there is a requirement to wear them when going into hospital for appointments and sooner or later that will be necessary for M and me, although we both currently have either telephone or video appointments booked for later this month.

Whatever your movements this weekend, be it to your local pub, restaurant or simply more staying at home, stay safe and keep well.

Easing Lockdown – 7Y2D COVID-19 Diaries Week 11

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How things have changed in the last week in the UK. The government announced that we could start easing the lockdown measures that have been in place since the end of March, a decision that has received mixed reactions from across the country. Changes have been discussed at the daily briefings, or published via press releases late at night, and all too frequently there has not been sufficient detail or further explanations provided to give comfort to anyone expressing concern that maybe we’re moving ahead too quickly when considering current statistics.

As lockdown eases, I’m able to continue to work from home for the time being, which has been especially reassuring given the recent publication of scientific research into the risk of COVID-19 on those living with diabetes. We had all been advised that those living with underlying health conditions were at higher risk during the pandemic, but the evidence suggests a particular link with diabetes and other health factors, some of which are relevant to me, others that aren’t. I won’t be changing the way I’m working at the moment and continue to limit myself to being at home or out for a walk in the area surrounding our village, somewhere I haven’t left since lockdown began.

Both G and M continue with their homeschooling and it was confirmed just before half-term that neither of them will return to school before September at the earliest. We continue to balance school-work with other activities to keep them entertained during the day, but they are yearning to spend some time with friends, although they do understand why that just isn’t possible at the moment. Our old trampoline finally gave up the ghost with a number of springs popping off in the first few weeks of lockdown, but we managed to get an order in for a replacement one and M has been waiting eagerly for it to arrive. The delivery finally happened at the start of this week and the introduction of a 16 foot trampoline to our paddock is certainly a sight to see. G and M have already been out bouncing as much as they possibly can and it’s definitely big enough to accommodate them both at the same time.

The biggest change with the easing of lockdown is for Mike. Having been furloughed on 1 April, he has spent the last couple of months doing a number of DIY jobs around the house and garden, but that is now coming to an end as he starts back at work tomorrow. This has come with its own set of concerns, not least about how Mike can best protect himself to minimise the risk of him bringing COVID-19 home to either M or me. We have agreed a process whereby he will change in the garage as soon as he gets home from work, put his clothes straight into the washing machine and will then come in and go straight to the shower before coming into contact with the rest of us. He has also been provided with a supply of PPE to wear throughout his day as he travels between houses to complete surveys and valuations. Finally, as I have taken over his study for my home office, he will be using the desk in the spare bedroom for when he needs to work on his reports.

What does the lockdown easing mean for you and your family? Are you returning to your new version of “normal”, or taking a more cautious approach for the next few weeks? Whatever you’re doing, stay safe and keep well.

Awareness in Lockdown – 7Y2D COVID-19 Diaries Week 9

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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.