Tag Archives: T1D

2021: Vaccine Update – 7Y2D COVID-19 Diaries Week 50

I’m definitely one for stretching out celebrations as long as possible, hence the Christmas lights are still up inside and outside of the house as well as the Valentine’s cards and my birthday cards from last week, and with M’s 15th birthday fast looming this is definitely a busy time of year for celebrating, but I’m thrilled to be able to add another celebration into the mix this week – and that’s that I’m finally having my first COVID vaccine tomorrow.

I’ve been incredibly lucky in that our local GP practice has kept their website and social media accounts updated with their plans for the vaccination rollout and so I’ve known for a couple of weeks that they had chosen to leapfrog Group 5 as those individuals could book appointments online at one of the mass vaccination centres and instead were going to focus on working their way through the 3,000+ of us in Group 6. I was rather hoping for an extra-special birthday present and whilst I didn’t receive the vaccine itself, I did get a text inviting me to book my appointment for this week.

After 50 weeks of spending very little time with anyone outside of our immediate household and not venturing much further that the 8 miles or so to my office on the odd occasion, it is extremely encouraging and exciting to finally be going forward with a positive step towards being able to widen up my circle. Of course, we will continue to follow the guidance given about wearing masks and social distancing, but it does feel we’re going in the right direction at long last. G and M return to school next week which naturally comes with its own concerns, but I’ve been clear that I expect them to continue with the precautions we put in place back in September and both have also said they will masks as needed whilst there.

I don’t know how my body will react to the vaccine, especially knowing that my T1D is likely to bring some additional tricks to the party given just about anything can impact it and not always in the ways you’d expect it to. Keep an eye on my Facebook and Twitter feeds over the next few days as I will be attempting to give regular updates following my jab, assuming that there’s much of anything to say other than that it’s done!

2021: A Milestone Anniversary – 7Y2D COVID-19 Diaries Week 49

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!

Virtual Appointments – 7Y2D COVID-19 Diaries Week 27

Another significant change that has happened during the COVID-19 pandemic has been the way in which medical appointments are held. Appointments are a regular feature of life for both M and me and they have continued in a variety of ways since March, some of them decidedly better than others.

For M, his appointments with his gastro consultant at our local hospital have been held over the phone, although I would have preferred the video conference option that was originally offered. A key part of M’s hospital visits for me is the visual review of his health, and whilst I can see just how much he has grown and how healthy he is looking at the moment, I would have liked for his consultant to have been able to do the same. He also has his height, weight and blood pressure monitored to ensure that he is growing as is expected, something which is particularly important as he heads into puberty. Right now, things are looking relatively stable for M health-wise, though his return to school last week has seen both him and G picking up a heavy head cold and bringing it home to generously share with Mike and me.

In comparison, I’ve had a mixture of telephone and face-to-face appointments with various members of my healthcare team. My long-awaited referral to one of our local hospitals for consultant-led care of my Type 1 diabetes finally happened and, even though the initial appointment was done over the phone, I am now the proud owner of a prescription for the Freestyle Libre sensors, something I’ve been self-funding for the last 4 years. This technology has made a huge difference to my T1D management and so both the community care nurse and consultant were happy to support the funding of this equipment for me.

My podiatry appointment was face-to-face (or should that be face-to-foot) at the health centre in the next town over. I was required to wear a mask throughout and use hand sanitiser each time I went in and out of the surgery, which happened more often than you might think for 1 appointment. I was called in by the podiatrist, who accompanied me to and from the building, bearing his pack of anti-bac wipes to clean any surface I touched whilst I was inside. The appointment went well with an almost clean bill of health for my feet, the only problem being a rather painful case of plantar fasciitis in my right foot. A couple of new pairs of shoes with arch supports later, and already everything is beginning to improve.

We’ve both also had appointments for vaccinations, which obviously have to be done in person. M had his Year 9 booster jabs during the summer, whilst I had my annual flu vac last weekend. M is having his flu vac this coming weekend, with both G and Mike booked in for them in a couple of weeks time. I’ve also had an appointment with my GP, which required me to take and email photos to them ahead of my telephone consult. So far, all appointments have gone as well as we could have hoped and I can only hope that as the government guidance changes over the next few months with the increasing number of COVID-19 cases here in the UK, our medics continue to keep in touch and make sure we’re all keeping well.

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

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.

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

The Power of Sunflowers

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.

#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!

#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?