Psychological and Emotional Support

Finally! My third and final blog from Diabetes UK Professional Conference -Psychological and Emotional Support with Type 1 diabetes.

IMG_5732

If you ask any Type 1 whether it is psychologically and emotionally taxing living with diabetes I think it’s safe to say 99.9% would answer yes. There’s an awful lot more to living with diabetes than meets the eye. As a Type 1 myself, I don’t think people understand the emotional demands diabetes actually creates in our day to day lives. I can confidently say that my diabetes has made me feel happy, sad, angry, frustrated, surprised and deflated just to name a few. It’s like you’re on a constant roller-coaster of emotion and you know you’re never going to get off of that roller-coaster.

Everyone deals with the roller-coaster differently and some are much better at that than others. During DUKPC Yvonne Doherty stated that; “Emotion is part of being human. It’s normal. Add in the burden of diabetes and there’s going to be heightened emotions. Emotions are fundamental to the human experience.”

Dealing with an extreme level of heightened emotions brought on by diabetes can be tremendously exhausting and it can really begin to affect you psychologically. People are wired differently and their outlook on life will be completely different to someone else’s. I like to think of myself as a very strong and confident woman. I do have some down days where diabetes really does test me, but I do find it easy to pick myself back up and carry on fighting. I guess being an Actor helps in abundance with that too as you deal with rejection quite frequently, and you learn to get over it and move on. However, that’s just me personally though. I don’t say this like it’s easy, it’s still challenging. I guess I just deal with it quite well. (Or so I like to think!)

I have heard from numerous Type 1s that during their diabetes appointments no-one ever asks questions like; “How are you actually doing?”, “How are you feeling emotionally?”, “How does your diabetes affect you psychologically?” I can vouch for this, as I don’t think I have ever been asked these questions myself either. Which when you think about it – it’s really quite concerning.

Yvonne Doherty talked openly about creating a House of Care which needs to be implemented into the system. She said “what we really need to do is to create a house of care that has emotional and psychological care at the heart of it.” I’m very sure that having that emotional and psychological support system in place within a diabetes capacity would certainly be beneficial. It would help to provide a more well rounded approach to diabetes. Not only focusing on the insulin calculations, the blood glucose readings and the HBA1c outcomes, but focusing on you as a person too.

IMG_5736

For Type 1s with existing mental health conditions and diabetes there needs to be something put in place to support these individuals. It’s very difficult when you have diabetes and any other comorbidity because appointments are separated. There isn’t a through-line that covers all bases for the individuals needs. It’s as if the individual is seen as various different cases, opposed to one person who is dealing with multiple branches.

What I feel is extremely important when it comes to diabetes and psychological and emotional support is simply having a strong support system around you. Taking medical professionals out of the equation it’s so important to surround yourself with family, your partner, friends and other type 1s who really can keep you grounded and always offer a safe space to unburden yourself. I am extremely lucky to say that I have the most supportive family, fiancé and friends that I could ever ask for. They are always there to lend an ear if I need to talk about anything and they always make sure that I’m doing ok.

I also find that the online community of Type 1s is an extremely important group to be a part of. We are all in the same boat and it’s fantastic to see how supportive the community really is. There is always someone available to offer advice and support when necessary. It’s also great to see how the community sticks together in the face of negativity. Here’s an example…

I only found out in my last appointment with my Diabetic Specialist Nurse the reason as to why I’m supposed to inject 10-15 minutes before food. I’ve always injected after food out of fear that I would inject first and for some reason not be able to finish all my food – therefore resulting in a hypo later on. My DSN told me the reason for injecting beforehand is to cut down the after food spikes because my insulin takes 10-15 minutes to work. I can honestly say in my 12 and a half years of living with diabetes, no one has ever told me that before. Obviously I was shocked by my new revelation and posted a tweet on Twitter. I had a lot of responses to this tweet which were a mixed bag of supportive, people letting me know they already knew that and some people who didn’t. Then there was one. One particular tweet that really sparked fury in me and the other Type 1s. The tweet was supposedly from a “Dr” and it read, “A high carb diet is not as necessary as breathing air. If you want to keep your legs cut the carbs. Injecting insulin will cause increased insulin resistance.” Absolutely appalling. Why on Earth would you say something as insensitive as that to a whole community of Type 1s?! Is it any wonder that we are challenged mentally every day when we also have to deal with comments like this?

When you are living with an autoimmune condition that you know could potentially lead to some horrible complications, you really don’t need people making comments like that. I am so determined to live a long and healthy life and avoid any possibility of developing further complications due to diabetes. The thought that I might is always there and yes, it is very scary. For some, the fear of potential future complications is the most terrifying thing. That fear can really mess with you.

It’s important to talk about your feelings and it’s even more important that people ask you about them too. You should always feel like you are in a position to share your emotions. I find it extremely cathartic to talk about how I’m feeling and how diabetes may affect me on a day to day basis. I would never bottle up how I feel because I ultimately wouldn’t be able to cope with that overwhelming sensation. So, if there’s anything I can offer to any Type 1s who need a little helping hand when it comes to emotional and psychological factors, this is what I’d say:

  1. Talk. Don’t bottle things up, really try to open up to your medical team, family member, partner or friend who you trust. It’s so important to talk because without it there can be no communication for how you’re really feeling.
  2. Surround yourselves with positive people. These should be the people who care about you. The people who want to know how you’re doing and who are always willing to listen. They should also want to see you live your best life.
  3. Get involved with the online community and speak to likeminded people. Remember, we are all dealing with this together so who better to talk to than the people who know exactly what you’re talking about.

If you are ever concerned about your own mental well being or that of a friend/family member/partner then do contact your/their medical team. Like I always say, I am no medical professional, I only offer my own advice. I am always available to talk to if anyone needs an ear too.

 

Eating disorders and disordered eating

Finally, I’ve managed to get round to writing my second blog based on the talks I attended at the Diabetes UK Professional Conference. This blog focuses on eating disorders and disordered eating in occurrence with diabetes.

Speaking very openly and honestly, I can safely say that I have never had any experience with an eating disorder or disordered eating. If anything, I love food too much! I am a huge foodie, so having an issue with food is not something that I’ve ever struggled with. Of course, as we are all only human, we all have our body hang ups and it’s accurate to say that I have mine too.

When it comes to something so tender as eating disorders you really do have to be careful about how you approach it. It’s also not something that people are willingly open to speaking about. Some people reading this will probably think “Well, how can she comment if it’s never happened to her?” Rightly so, I haven’t got any experience to draw from, but I can always express my thoughts. I know of a few friends and acquaintances who have had experience with eating disorders. Some who have battled through it all tremendously and others who are still living with the demons of it today. However, before attending DUKPC I had never met a type 1 who had experience with eating disorders – or at least, not to my knowledge.

When I decided to attend this talk I felt like I was attending it more out of curiosity over anything else. I knew it wouldn’t upset me on a personal level, but I knew that whatever I was going to hear was going to move me emotionally. I was 100% right about that.

I want to start with the term “diabulimia”. For most of you, this term is probably completely alien to you. Funnily enough, it isn’t a medically recognised term despite it being a real eating disorder. Diabulimia is an eating disorder in which people with type 1 deliberately give themselves much less insulin than they actually need, or completely stop giving themselves insulin all together. This is all focused on the intention of losing weight – which inevitably will happen without insulin on board.

I really want to draw attention to an incredible talk by a wonderful woman by the name of Lynsey. (Who has just triumphantly completed the London Marathon! Well done Lynsey!) Lynsey bravely spoke about her experience with omitting her insulin injections in order to lose weight at DUKPC. Her talk was so candid and honest and I was extremely moved by her openness.

Lynsey was diagnosed at quite a young age. Her parents had a really good understanding of diabetes so her levels were always really well controlled, and she would often get praised at school by teachers who would commend her on how well she dealt with it. As she got a little bit older classmates would begin to make comments such as “Why are you injecting yourself in front of people? That’s disgusting!” The more comments she got the more it made her think about not injecting. One day she didn’t inject and realised that nothing bad had happened – she wasn’t dead and she still managed to get on with her day. A few years later she put two and two together and made the link between not taking insulin and losing weight. Lynsey was around 16 years of age then, so much more conscious of her appearance. It wasn’t until she went to University that things really started to get out of hand. Due to the rapid weight loss, Lynsey was receiving loads of comments from friends telling her how amazing she looked and how much weight she seemed to have lost. These comments became a source of motivation and a boost to her confidence. Unbeknown to Lynsey she had no idea what she was actually doing to herself and her body.

IMG_5811

Lynsey became so unwell that she didn’t want to get out of bed and spiraled into depression which she was given anti-depressants for. It was never addressed that she had diabetes when she was seen for the depression. There was no link made there, however Lynsey now knows that her relationship with diabetes caused it.

IMG_5812

Even after graduating from University Lynsey was still omitting her insulin in order to continue her weight loss.

IMG_5813

It seems quite clear that throughout Lynsey’s ordeal with diabulimia, no-one ever asked her if she was still taking her insulin. It’s actually unbelievable. Unfortunately, due to Lynsey’s lack of care towards her diabetes during the time, she is now living with complications due to her actions.

IMG_5814

As you can see from the image above Lynsey is now registered partially sighted and has no peripheral vision. The vision she does have left isn’t great, but the doctors did all they could to save the remaining vision. She is very lucky.

All this to lose weight. Diabetes honestly is a condition that doesn’t get given enough credit for it’s severity. It’s often poked fun at by people and used as a stimulus for food related jokes which I am strongly against. The seriousness of Lynsey’s story really does go to show how abusing your diabetes really doesn’t do you any favours later in life. I’m sure if young Lynsey could have looked into the future and seen what she was going to have to live with, she would have thought twice about her actions and sought help. What’s baffling to me, is that not one person asked her about taking her insulin. The mind just boggles. Saying all this, Lynsey is such an inspirational woman and although I haven’t known her for very long, I am proud of the journey she has taken in order to turn her life around. She is now a motivational speaker in regards to diabulimia and has recorded a few videos about it with Diabetes UK. You can see her ‘Recovering from diabulimia’ video here.

There was another discussion in the talk from Dr Simon Chapman. He spoke about how inadvertently doctors are not helping when it comes to diabetes and eating disorders.

IMG_5817

He actually commented that he feels that “the scrutiny I am forcing patients to do can be causing a negative affect.” I understand where he is coming from here. When you have diabetes you are constantly thinking about food, carbohydrate contents, numbers, nutritional information, weight gain or weight loss. I can see why you could easily become obsessed with this information and take it to the extreme. I really wouldn’t agree that doctors are causing the problem though.

All in all, the talk was strongly informative and I was particularly moved by the personal account from Lynsey. As I said before, although I have never experienced an eating disorder or any form of disordered eating, I can still understand what I am told about it. For anyone who is struggling to understand why someone would put themselves under such severe pressure and strain, think of it like this – “You find yourself in the grip of this larger power which starts off small and gradually takes over.”

Diabulimia does exist. It needs to be recognised and things need to be done to make it stop. It took 6 years before something was done for Lynsey. Lynsey herself wouldn’t want to see anyone else go through what she went through. Follow Lynsey on Twitter @T1Diabolical

Remember: if you think you or anyone you know is suffering from any form of eating disorder please contact your medical team in order to gain the help you/they need. Thank you.

Macrosomia – what is it?

When I attended the Diabetes UK Professional Conference I sat in on a talk about Macrosomia. The talk was titled ‘Macrosomia: Is it inevitable, is it preventable and does it matter anyway?’ The talk was broken down into sections featuring presentations from various speakers. The talk ran as follows:

  • 11.40 – Can we accurately predict macrosomia and should this effect timing of birth? – Edward Mullins, London.
  • 12.00 – Can continuous glucose monitoring reduce the risk of macrosomia: Lessons from the CONCEPTT study – Helen Murphy, London.
  • 12.20 – The consequences of macrosomia to later life: How real are they? – David Dunger, Cambridge.
  • 12.40 – Results from the National Pregnancy in Diabetes (NPID): Are there options for reducing macrosomia? – Nick Lewis-Barned, North Shields.

For anyone who is unsure of the term ‘macrosomia’, it means a baby who is born large for it’s gestational age. Babies who are classed as ‘macrosomic’ have a birth weight of 8 pounds, 13 ounces or over.

As a woman who is approaching her thirties (I’m 28, turning 29 at the end of this year) the talk on macrosomia was something that interested me. After I get married, starting a family seems to be the next step for myself and Bobby (at some point, we are in no immediate rush as other things such as career take precedence right now) so it only seemed right that I attended the talk. I’m not going to lie, but I came out of the talk feeling overwhelmed and quite frankly quite concerned. I think what really threw me was the intense scientific terminology and the detail into which the information went. Like I explained in my previous blog, the conference is not particularly designed for patients, but for medical professionals, so the content is vastly technical. As a patient I came away feeling like I’d heard too much. However, after I’d had time to think and reflect on the situation, it sort of made me extremely determined to be one of the type 1 diabetic women who don’t end up having a macrosomic baby. Bring on the challenge I say!

What did I learn?

First of all, there are a few concerns for mother and baby during the birth of a macrosomic baby. Due to the large size of the baby the mother may experience trauma whilst giving birth. The baby also has a much higher risk of shoulder dystocia which can be life threatening for the baby. It can also cause injury, hypoxia, cerebral palsy and stillbirth. Shoulder dystocia is where the babies shoulders become lodged behind the mothers pelvic bone because the baby is too big for the birth canal.

For most type 1 ladies out there you will probably have heard that the birth tends to be induced early. This is because the early induction does reduce the mean birth weight as a baby can grow rapidly in a matter of weeks. You may be wondering, why does this happen to women with type 1? Well, the reason why macrosomia can happen, is because a higher amount of blood glucose passes through the placenta and into the fetal circulation. The extra glucose in the fetus is stored as body fat and this is what causes macrosomia.

I found in the talk that there seems to be a correlation with babies being born big and remaining big throughout their adolescence and adult lives. Information did show that macrosomic babies are more likely to become obese or have metabolic dysfunction.

IMG_5787

IMG_5794

Does this mean that all babies born to type 1 diabetic mothers are going to be born macrosomic? No. Apparently during a study 1 in 2 babies born to type 1 mothers were born big for their gestational age. So there is hope for us all!

The use of CGMs (continuous glucose monitors) has been found to reduce the potential of having a large baby. For mothers using CGMs for every 5% extra time in blood glucose range reduces the outcome of having a large baby. There has also been evidence that in terms of prevention of macrosomia medical professionals need to understand more about the relationship between mother and baby during pregnancy. Reducing the amount of glucose in the blood and reducing the HBA1c level seems to really make an impact on the prevention of babies that are large for their gestational age. The mother’s BMI also makes a difference.

So, can medical professionals accurately predict macrosomia? No. But they can try. You can predict macrosomia by feel, ultrasound and blood – however – it’s not accurate. If macrosomia is suspected it will affect the timing of birth delivery. Women will be induced and possibly elected for a caesarean.

There is a vast amount of information to take in with regards to macrosomia. Is it scary? Yes. Well, in my opinion it is. There is an awful lot to consider and I know that when I am going to plan on getting pregnant, that I am going to do absolutely everything to ensure that I have a smooth running, healthy pregnancy. To be honest, I’m just scared about the complications that could possibly incur.

Saying all this though, having a macrosomic baby doesn’t have to be a traumatic experience and some children have been found to grow into healthy adolescents and adults. So it isn’t inevitable for everyone.

It’s a really difficult conversation topic to broach, especially writing about it in my blog. A helpful tool for pregnant women with type 1 is Mumsnet. There are lots of chats on there from women who are having macrosomic babies and I’m sure there will be women talking about their birth stories too. It’s not all doom and gloom, I promise. It’s just one of those things that as a diabetic woman, we need to get our heads around.

I hope this hasn’t scared anyone too much! If you do have any concerns about macrosomia, do please talk to your healthcare team. They will be able to offer out any help and advice that you could possibly need and guide you through the whole experience step by step. Like I said before, just let this make you determined to do everything possible to ensure you are giving your baby the best possible start in life. I think that’s fair to say.

 

Diabetes UK Professional Conference 2019

Last week I was very fortunate to attend the Diabetes UK Professional Conference at the ACC Liverpool. I attended as one of the bloggers who had applied for the opportunity and I was lucky enough to be one of the chosen 3. When I got the email to confirm that I’d been chosen I was thrilled – what a great opportunity this would be for me to do some networking and to find out more about the condition I live with on a daily basis. It’s also funny knowing that a tonne of type 1s I follow on social media I would finally get to meet in the flesh!

The Diabetes UK Professional Conference is an event that happens every year and this year it was held in Liverpool. Healthcare professionals from across the board buy tickets to attend the 3 day long event and have the opportunity to attend talks from various speakers who cover a wide range of topics from hypoglycaemia to eating disorders. It’s also a good event for networking in general and for widening knowledge for your own best practise.

I attended the conference with two other wonderful bloggers – Alyssa and Paul. (Here we are below hanging out with The Beatles on the first day of the conference.)

Alyssa runs http://www.pumptasticscot.co.uk/ and you can follow her on Twitter @faulkner_alyssa. Alyssa was diagnosed when she was 14 years old and she is currently a student. She uses a Medtronic insulin pump which she seems to have a good relationship with. What a lovely girl she is too! She seems to have her fingers in plenty of pies in the Diabetes world and is actually a Diabetes Scotland Young Leader. Her blog mainly focuses on her life and how living with type 1 diabetes impacts that.

Paul is the founder of https://1bloodydrop.com and you can follow him on Twitter @1Paulcoker. Paul has been living with type 1 for quite a while, having been diagnosed in 1977. In Paul’s 40th year of living with diabetes he ran 40 half marathons to mark the occasion. He actually follows a high carb/low fat diet which I was really intrigued about hearing about! 1bloodydrop is all about diabetes and exercise and is a great blog to refer to for information. Paul also seems to know A LOT of people and we had an ongoing joke about his “fame” during the conference.

The main reason the 3 of us were there was to tweet live from the conference to keep the Diabetes community on social media informed with information about the talks going on. What I can say was that it was absolutely EXHAUSTING. You wouldn’t think tweeting would take it out of you, but it really did! I think the exhaustion came from an amalgamation of things for me personally. Lack of sleep, concentration and taking in a hell of a lot of information. We did seem to do a good job from the amount of likes, retweets and comments we received as a group on Twitter. Although we couldn’t tweet everything, we managed to cover a myriad of bases between us and attend a wide array of talks. I also tried to stay active on Instagram throughout the conference and you can see some of my videos on my highlights entitled ‘DUKPC19‘ (@ec_bostock).

I must admit, because the talks were tailored to healthcare professionals, there was a lot of technical wording that I really didn’t understand (as I’m sure you can imagine). So sometimes some of the talks really didn’t translate well to me. It’s difficult to sit through something that you don’t understand. However, other talks I attended were great and extremely informative and I’m going to be writing a few focused blogs on them over the next couple of weeks. These blogs will focus on; Psychological and Emotional Support, Macrosomia and Eating Disorders and Disordered Eating. Although not all of these things affect me, I found the talks so interesting that I feel compelled to write about them.

Like I said, I had such a great time at the conference and it was so wonderful to meet some other type 1s. Although you don’t know each other, before you meet you already have a strange sort of warmth towards these people because you’re all dealing with the same condition. You’re all part of this diabetic family on a boat you can’t get off of and everyone deals with it in a different way. We actually had a group meet up of about 12 of us for tea and it was funny seeing all the blood testers, CGMs, insulin pens and pumps being whipped out before and after food.

Although the conference was brilliant and I had a great time, I must admit that I did come away feeling overwhelmed. I don’t particularly know how Paul and Alyssa felt, but I really did feel that I’d taken in far too much information for my own good. As a “patient” I felt that some of the talks gave me information that I didn’t necessarily want to know. That’s just how I felt personally. As much as I am positive about my diabetes and never let it hold me back, I am fully aware of all the negatives that come hand in hand. Being aware of them is fine, but finding out too much information just didn’t sit right with me. I’m not denying or ignoring the fact that bad things can happen, but I really didn’t need to have constant negative information thrown at me regarding the condition I live with on a daily basis. For me, it was just a bit too much.

What the conference really did pull further into the spotlight for me, was that we really are in full control of our own life and death. We administer insulin that can control wether we live or die – and that’s a really scary thought.

I’m not one for doom and gloom in the slightest and as anyone who knows or follows me, you know that too. I guess hearing all the negatives really did just make me feel even more determined not to let any of those things happen to me. I want to be the best type 1 I can be and really have all the control. Determination will prevail. So, despite being overwhelmed, it’s probably encouraged me to fight harder and improve myself further. Which really, can only be a good thing.

If I was given the opportunity to attend the conference again, I definitely would. Next time I would be more prepared for what was ahead and I could choose the talks I would attend with a bit more consideration for myself.

Another thing I will mention is that the Diabetes UK team who attended the event are all lovely! What a fantastic bunch of individuals they have working for the charity. It was also wonderful to meet Chris Askew, Chief Exec at Diabetes UK. Such a great guy who took the time to chat to myself, Alyssa and Paul and make sure we were getting on ok.

Do look out for my upcoming blogs focusing on the talks from the conference!

We’re ENGAGED!

So as many of you are most definitely aware, on the 22nd February 2019 Bobby asked me to marry him and I said YES! What a weekend that was! I had absolutely no idea that he was planning on getting down on one knee and asking me to marry him. I was completely oblivious and the whole weekend had been planned to a T.

22nd February is actually our anniversary and 2019 marked our 3rd. I had an inkling that Bobby was planning on taking me away for the weekend because he’d asked me to make sure I had the whole weekend free. Although I’d guessed that we were going away, I had absolutely no idea where. Bobby eventually confirmed that we were going to be going away somewhere and gave me an opportunity to ask questions.

“Are we going somewhere in the UK?” – “Yes”
“Is it somewhere we’ve been before?” – “Nope”
“Have we talked about going to this place before?” – “Nope”
“Do I need to take any swimwear?” – “Nope”

I literally had no idea where we could have been going. To make matters even more confusing Bobby presented me with a pair of wellies that I might need to wear on our weekend away. He also told me that we were getting a train to this unknown destination from Waterloo. My geography knowledge is utterly horrendous and I couldn’t even work out where we would be traveling to from Waterloo because I wasn’t sure where the trains went.

IMG_5569

After a couple of hours traveling we arrived at the beautiful Sway in The New Forest. What a gorgeous place and an absolute breath of fresh air from the hustle and bustle that London supplies daily. Now, if you’ve never been to The New Forest, I highly recommend you go, especially if you’re a walking fan. There are some stunning walking routes over fields and beautiful countryside surroundings that really do take your breath away. New Forest is also home to tonnes of wild donkeys and horses that litter the fields. They also turn up walking down the high street of some of the villages in The New Forest. Make sure you check it out on their official tourism website here.

Adding to the mystery of the weekend, Bobby had also given me a few clues about where we were going to be staying in Sway. I knew it wasn’t a hotel and it wasn’t a tent, so where could it be? Well, where it was, was amazing. We ended up staying in a beautifully converted Shepherd’s hut located on the grounds of a farm with stables. It was incredible.

IMG_5662

The hut was surrounded by fields with horses that were kept in a stables located on the farm house grounds. The view was beautiful and such a calm and tranquil setting.

IMG_5665

The Shepherd’s hut was decorated perfectly inside. There were so many homely decorations which made the hut feel so comfortable and cosy. Inside there was a double bed, TV, seating bench, kitchen equipped with microwave, toaster, kettle, coffee machine, 2 hobs and fridge and a bathroom with a very large shower. Amanda who owns the hut had even supplied us with breakfast food and a bottle of prosecco in the fridge! (Which I thought was for it being our anniversary… how wrong I was!)

The Shepherd’s hut is available to book via airbnb and you can find it here. I highly recommend anyone to stay there. You are guaranteed to have the most beautiful time. The family who own it are lovely too and are more than willing to accommodate to your every need.

After arriving at the hut on the Friday, we had a couple of hours down time and then we got ready to go for a meal that Bobby had arranged for the evening. We went to a restaurant called The Mill which is in a little village called Gordleton – around a 15 minute drive from where we were staying. You can check it out here. We practically had the restaurant to ourselves when we arrived which was beautiful as it really allowed us to enjoy the setting. The restaurant is located in gorgeous grounds with a bridge running over a little river. The grounds also have a beautiful walkway leading up to the restaurant with lights leading the way along the path. Just stunning. We had beautiful food in the restaurant and shared some wine. It was all just perfect.

We headed back to the hut and decided to sit out on the patio. Bobby lit the log burner and put out some candles on the little table outside. We sat out there sipping champagne in the dark of night and it was beautiful. This is where the proposal happened. It was a wonderful and memorable moment and I will cherish it forever. It was such a personal moment for the two of us and one that I will never forget. I can’t explain how shocked I was. Honestly, I’ve never felt shock like it! I cried so much and of course I said yes! I am very excited to become the future Mrs Bonehill!

IMG_5633

We spent the rest of our weekend away exploring the little town of Lymington and reveling in our new engagement bliss. It was beautiful. I feel like the luckiest woman on the planet! We have so much to look forward to and we have a wedding to get planning! It will be very interesting planning a wedding as a diabetic and actor because there are so many things to consider such as; will I need to have a special cut out in my dress for injections? Or, will we add a performance element to our wedding? Who knows? We can only wait and see! Wedding planning is definitely going to be kept under wraps for now because we want it to be a special experience for us both. Keep your eyes peeled though because I’m sure I’ll be doing a blog or 2 about how we’re getting on!

 

Don’t let diabetes get you down.

I am currently battling to try and get the green light for a FreeStyle Libre. Boy, I can tell you, it’s not been easy! First of all, the entire issue was due to the Libre not being funded in various areas which obviously lead to the dreaded “postcode lottery” that swept the nation. Slowly but surely the Libre has been funded and approved in a growing number of areas, which is fabulous to see happening. The postcode lottery will officially be brought to an end by 1st April 2019. However, there is a ridiculous criteria which you have to meet in order to be put forward for an application to receive a Libre. The terms of the criteria are highly unfair and seem to reward people who aren’t able to take care of themselves, rather than reward the people who try bloody hard to take control of their condition. The criteria list taken from the Diabetes UK website is as follows;

  • Patients who undertake intensive monitoring. (Basically people who are testing their blood sugar 8 or more times a day! How do they even find the time to do that?!)
  • People who meet the current criteria for insulin pump therapy. (People who have a HBA1c of 8.5% and higher or people who are having disabling hypos)
  • People who have recently developed impaired awareness for hypos. (Not having any or low awareness)
  • Frequent hospital admissions for DKA or hypos.
  • People who require a third party to monitor blood sugar levels.

The criteria has some understandable points but others are ridiculous in my opinion. Who has time to check their blood sugar 8 or more times a day?! You’re not even going to get accurate readings if you’re checking that often because you’re not giving your insulin enough time to work. It’s just pointless. It does seem that the more clueless you are (unless you need help from a carer or third party, then that’s an exception) the more likely you are to be rewarded with this incredible technology that everyone is desperate to have. Whilst the rest of us are left up shit creek without a paddle.

Saying all this, I have been working with the doctor to try and get me seen and approved for a Libre. So fingers crossed! It’s a bit of a tricky game, but I’m certain I’ll get there in the end. I’ve got to keep my chin up and fight for what’s right.

It’s so difficult when you’re diabetic. You have so many factors that affect your blood glucose control and it’s nearly impossible to get it spot on and within range 100% of the time. You’d have to be in a boring routine, have no emotion, eat the same low carb meals every day and never be ill. I’m sure that’s how you’d achieve the blood sugar readings of a non diabetic, but who wants to live like that?

Striving to achieve perfect blood sugar is a constant battle and it can really mess with your emotions. I must admit, there have been numerous times throughout my 12 years of diagnosis where I have checked my blood sugar and shouted “WHY?!” at my meter. Sometimes it really does feel like you have no idea what’s actually going on inside your body and there really is no explanation for specific outcomes. These things happen and you just can’t be perfect all the time. Is that ok though? Yes, that is more than ok because you’re doing really well regardless. You need to give yourself credit for keeping yourself alive and well.

It’s recently began to dawn on me that I also don’t need to feel ashamed or embarrassed about not doing as well as somebody else is. I don’t know what everyone else has gone through and I don’t know how hard they have worked to get to the level of control they are at today. Up until recently I used to die inside a little bit whenever I was asked about my levels or had to show them to a nurse or medical professional. If I’d had a particularly bad week it would make me feel like a massive failure when looking at those readings again. Like I’ve said though, I’ve learned now not to be embarrassed if I’ve had a bad week. It really does happen to everyone! Keep your chin up and keep soldiering on, you’ll get there in the end.

I’m trying really hard on focusing on bringing my HBA1c level down. I was shocked at finding theta my HBA1c had gone up by 0.1 after Panto because I thought it was going to be a lot worse! I am now sitting at 7.5% (58mmols), which in hindsight could be so much worse. I really do want to be one of these people with an insanely well controlled HBA1c, but, cor blimey, it’s a battle. A friend of mine who is also a type 1 made a good point in regards to HBA1c readings recently. He said “You have a couple of hypos a day and then your reading will come right down. It’s very misleading”. He’s right, it is very misleading. However, I guess you know personally if your HBA1c is lower because you’ve been well controlled or not. For me, I just want to see results that reflect how well I am doing.

I’ve read a lot recently that refer to mental health and type 1. Not necessarily referring to individuals with existing mental health conditions and type 1 combined, but the impact having type 1 generally has on your mental health. Us type 1s know that diabetes is a minefield. It’s never straightforward and no 2 days are the same. One of the hardest questions that people ask is; “It’s manageable though isn’t it?”

Yes, in a nutshell diabetes is manageable but that doesn’t mean it’s easy to manage! There are so many factors that you have to take into consideration when “managing” your condition – and mental health is one of them.

Diabetes really can mess with your emotions. It frustrates, elates, angers, saddens and baffles you regularly and it can send your mind into all sorts of turmoil. You find that you ask yourself questions that you can’t quite find the answer too. It’s really hard work and there are a lot more factors to it than people realise, it’s not just pricking your finger and injecting yourself. You have so much more to consider:

  • Have I checked my blood sugar?
  • I there somewhere to wash my hands so I can check my blood sugar and have an accurate reading?
  • What’s my level – is it high/low?
  • Do I need to do a correction dose with my food/inject less for low blood sugar?
  • What am I going to eat?
  • How many grams of carbs are in my food?
  • How much insulin am I injecting for my food?
  • Should I eat that snack knowing it will give me a higher reading before my next meal?
  • Did I inject correctly for my food earlier?
  • Is my blood sugar too high or too low?
  • Have I done any exercise/am I going to do any exercise?
  • I’m really ill today, how much should I be injecting?
  • It’s really hot today, should I take more or less insulin?
  • I’m really excited about something, Will this have an impact on my blood sugar?
  • If I check my blood and it’s too high, how will that make me feel?

These points aren’t even the extent of what we all go through on a daily basis, there are many more! Each and every one of us type 1s should take great pride in the fact we go through these motions every day and we’re still here, keeping ourselves well and alive!

Don’t let diabetes get you down. No matter how difficult it gets and how much you feel like you need to fight – keep going. You’re doing a great job. There are so many others like you and we’re all here to help each other and give our support. Don’t be afraid to reach out to the diabetic community and seek guidance or advice. We’ve all been through it too. Keep going, you’re doing great!

Ganesha Gear – Diabetic Bag of Life

I would have written this blog entry sooner however, I won this bag and then pretty much had my birthday and then headed off for panto so I was really busy. Alas! Here it is!

So I was first introduced to Ganesha Gear by my wonderful friend Jonsel (Instagram: @diabeticshowbizshizzle) He actually tagged me in a competition on Instagram where if chosen both of us would win a ‘Diabetic Bag of Life’. We only went and won the competition and we were both sent one of these wonderful little bags from Ganesha Gear!

The ‘Diabetic Bag of Life’ is designed by a diabetic, for diabetics. The bag can be used by any diabetic to keep their supplies together indoors and outdoors, however it is primarily targeted at diabetics who like to train and keep physically active. The bag is designed to hold all of your diabetic essentials whilst on the go and partaking in activities. It’s definitely better than having everything in separate bags, all over the place and potentially getting lost!

So tell me all about it!

There are many pros to the ‘Diabetic Bag of Life’.

First of all the bag comes with 2 different straps. 1 strap is shorter for around the wrist or holding by hand. The other strap is longer and can be worn around the body so you are completely hands free. Both straps attach via a carabiner clip which is easy to use and allows you to easily change between straps.

The bag also has tonnes of zip sections which is really handy. It even has a zip pouch that is made of netting and designed for used needles/lancets/strips which can actually be removed from the bag as it’s attached by velcro.

 

This slideshow requires JavaScript.

There are some card slots in the very front of the bag which you could pop your bank card in if you’re on the go, or even your medical ID card (which is what I imagine it’s designed for).

There is definitely enough room in the bag for all of your essentials! I managed to pack in:

  • Insulin pens
  • Lancets
  • Needles
  • Test Strips
  • Finger Pricker
  • Blood Tester
  • Dextrose Tablets

Even with all of those bits and bobs, there was still loads of room inside for much more. If needed you could get some ketone test strips in there among other things that you might want with you too.

What makes this bag a little bit different is that it also comes with a Bluetooth tracking device which connects to an app you can download on your phone called Echo. If you happen to misplace your bag you can control the tracker from the app and it will alert you as to where it is. Fancy huh?

img_5439

Would I change anything about the bag?

I wouldn’t particularly change much about the bag because I think it’s an amazing product which will really benefit a myriad of people. I would however, love to see the bag in a range of different colours. For anyone who knows me well, I am a massive fan of anything pink! So I would definitely love a pink version of the ‘Diabetic Bag of Life’. I would also add on a second attachment so you can have the longer strap going fully across the body and the bag would be the right way up, opposed to hanging downwards.

Overall though, you need to check out the Ganesha Gear site and get yourself a ‘Diabetic Bag of Life’! I would definitely give the bag a 4.5/5! The 0.5 deduction is down to it not coming in any other colours yet and the lack of second attachment. Really though, that’s just me tailoring it to myself personally.

If you have any questions or queries please do contact them because they are lovely and will willingly respond to any messages!

You can find them on various platforms:

https://www.ganeshagear.com/home
Instagram: @ganeshagear
Twitter: @GaneshaGear
Facebook: Ganesha Gear

 

 

 

Nutritional Information Frustration

Now, I don’t know if this is just me (but I’m definitely sure it isn’t) but it annoys and frustrates the hell out of me when I can’t find any nutritional information for something that I am eating. It’s not so bad when you buy food from a shop such as Tesco or Sainsburys because 99% of the time there will be a Nutritional Information Guide on the back of the packet which would look something like this:

nutritional info (1)

These nutritional guides are great because not only do they show the nutritional value per 100g but also per portion or to the specific gram measurement of the individual item. For type 1 diabetics like me, showing this information is so helpful because all I have to do is look at the carbohydrate content and work out how much I have consumed and there we have it – I know how much insulin to inject. Perfect.

You can also get nutritional guides that look like this:

nutritional info (4)

(Which I’m sorry is a bit difficult to see in this picture) This type of guide just shows you the specifics for 100g of the product. It doesn’t break it down into a smaller value to suit the size of the bar. For me, I would just have to do some maths to work out what I need to inject for the whole bar which is obviously way less than 100g worth. To do this I would take the number of carbs in 100g, divide it by 100 and then times is by the size of the bar. For example: 57g ÷ 100g × 17g = 9.69g.

You may also get a packet that gives you absolutely no nutritional information at all, like this:

nutritional info (2)

It gives you allergy information which is fantastic, but it gives you absolutely no information about nutrition, which can be very difficult when deciding how many units of insulin to inject!

The one good thing about this food packet though, is that it has a barcode. Hallelujah! Why would a barcode be of any use to you? You ask. Well, if you have the trusty little app My Fitness Pal you’ll know why! My Fitness Pal is an amazing app to work out any nutritional value for a product missing a nutritional value guide. All you have to do is scan the barcode with your phone and the app brings up the product and nutritional breakdown. It is fabulous and I use it often. It is very reliable and I am yet to come across a product that doesn’t register within the app, however I must say that sometimes the full nutritional information may not be available, so you do need to check carefully.

My main frustration with nutritional guides is restaurants. Now, I know that restaurants are busy making good food and making money from selling that food, however, it would be amazing if all restaurants could have access to nutritional information for the food they are selling. A lot of restaurants now have allergy information on a separate menu and also offer gluten and dairy free alternatives which is a massive step in the right direction. I personally find it very hard to find nutritional information for carbs for most restaurants. The best types of restaurants that actually give you that information are usually large chains such as McDonalds, Pizza Hut and Weatherspoons. Although they are not always the most healthy places to choose to go and eat, they do have access to their nutritional menus via all of their websites.

In my opinion access to nutritional information is just as important as having allergy information available. After Natasha Ednan-Laperouse died in 2016 from having an allergic reaction after eating a baguette from Pret-A-Manger, her family have called for a law change on all food labeling in order to save lives. Natasha had an allergic reaction to the sesame seeds on the baguette which were not labelled on the baguette packaging.

For some people, they wouldn’t notice whether something had nutritional or allergy information on a packet because it’s never been relevant to them or their lives. You really do only begin to look at these things when you have a reason to look. I can’t ever recall a time that I looked at the back of a food packet to see the nutritional content before I was diagnosed with diabetes.

On Monday 7th January 2019 there was a discussion on The One Show about food labeling and how this was coming into effect. Actor James Norton (who is a type 1 diabetic) was actually on the show at the time and he raised awareness of having to count carbohydrates in order to know what to inject for his diabetes. It was only a short segment on the show but if you can find it on BBC iPlayer, then it’s definitely worth a watch.

A really helpful book/app for diabetics to use alongside My Fitness Pal is Carbs and Cals. Carbs and Cals shows you picture breakdowns of portion sizes. It really helps you to learn about carbohydrate contents for different portion sizes. This is amazing for when you’re in a restaurant and you have absolutely no knowledge of what you’re eating. A well educated guess is always better than a completely blind one.

 

 

Happy 12th Diaversary to me.

So the 28th December 2018 marked my 12th year of living with type 1 diabetes. Did I celebrate? Not in a huge fashion, but I always raise a glass and give a nod to getting through another year living with this condition. It’s not easy and it will always come hand in hand with its trials and tribulations. No matter how advanced the technology to support diabetes becomes, there will always be a lot of work to do on my part.

This year, on my 12th Diaversary I was doing what I do best – performing. We are very close to the end of our run of Peter Pan with 2 shows left and I couldn’t be happier spending my Diaversary performing. It reminds me that no matter what diabetes throws at me and the challenges it presents, it never stops me from achieving and living out my goals – and quite frankly never will.

I feel that throughout my 12 years since being diagnosed I have learned an awful lot. Things have definitely changed for the better and technology is progressing positively. This is all in the hope of finding a cure for diabetes. Which really would be an absolute miracle. I find it hard to imagine my life without diabetes to be honest, so what the future could hold is potentially mind boggling to me!

When I look back 12 years ago to when I was first diagnosed, I was a mess. That’s to be expected though. I spent a lot of time crying because I didn’t understand why it had happened to me and I spent a lot of time questioning whether I would ever be able to live a normal life. The answer to that is yes. It hasn’t ever gotten in the way of anything. I can still do everything that anyone else can do, it’s just an added factor to my life which makes me think a bit more.

When I was first diagnosed I was only on 2 injections daily which really limited what I could eat throughout the day. It was really difficult to control my blood sugar levels and I was soon moved onto different insulin and taught how to carb count. Carb counting is extremely beneficial for me and has really helped me to control my levels. However, even now, 12 years on I’m learning every day and I’m still finding out how my body reacts to certain things. I think this will be something that I will constantly learn more about throughout my life.

There are still so many things that I want to achieve in regards to my diabetes.

  1. Lower my HBA1c – I find this really difficult. No matter how hard I try to keep my levels in check there’s always something that throws a spanner into the works; illness, emotions, adrenaline.
  2. Inspire others on their diabetes journey – Whenever I blog, speak or post anything about diabetes I feel really rewarded. I get such a positive response from others who feel driven or educated by what I have spoken about. It’s such an amazing feeling and I want to keep inspiring. When I participated in the Happy Diabetic Challenge in November I received so amazing messages and feedback from others.
  3. Educate people – I’ve said it countless times before and I’ll never stop saying it, but people need to know more about diabetes. I will keep talking and educating and you should too.
  4. Become an ambassador for Diabetes UK – This is an ultimate goal of mine. I’d love for my career to get to a certain point where I could inspire others with diabetes to go into the performing industry. I would love to make it to ambassador. Fingers crossed!
  5. Raise more money for Diabetes UK and other diabetes charities – I absolutely love taking part in charity events and I hope to continue doing so and raising more money. I really hope to do a big charity fundraiser near my 30th birthday, but I’ve got a couple of years to sort that one yet!

No matter how far into your diabetes journey, you should applaud yourself for making it as far as you have every day. You are fighting each day to take control of your condition and it’s inspiring. Keep going and keep positive. Grab the bull by the horns and run with it. You are the only person who can control your future and you need to rule your diabetes. It’s a part of you, so embrace it! Spread the word and smile.

A very happy 12th Diaversary to me.

It’s panto season!

Oh yes it is! As most of you know I am currently performing in Peter Pan at the Princes Theatre in Clacton-on-Sea, playing the roles of Mrs Darling/Darcy the Pirate and Persil the Mermaid. I am absolutely loving it and I’m having so much fun working for Polka Dot Pantomimes this year.

This is actually the first year I’ve performed in a static pantomime as I’m usually doing school tours. (I definitely don’t have the energy for those any more!) I am definitely enjoying it more than ever this year and we are very lucky to have such a wonderfully talented cast too. Every single one of the cast is an absolute delight to work with and we all get on very well! (Which is an absolute bonus)

We’ve also had the privilege to work with the wonderful Vikki Bussell who has choreographed for Polka Dot for years and the fabulous Sallie Warrington who has been our director for Peter Pan this year.

Panto is quite a controversial topic of conversation in the performance industry. Some performers have the opinion that panto is beneath them and that they would never do it, yet others absolutely thrive off performing in panto every year. I personally love panto and would always accept the opportunity to do it. I think it’s such a fabulous tradition and who doesn’t look forward to seeing a pantomime at Christmas time?! I actually read a really great tweet from actor Alan Mehdizadeh (@alanmehdizadeh) that said:

I hate comments from actors mocking or disregarding panto. Panto keeps many of our regional venues open. It accounts for around 20% of all UK theatre revenue, it’s fun, hard work and it’s often the first time kids experience the magic of theatre. Shut up, and respect your industry!

I am in complete agreement with him. At the end of the day panto is a great way to have fun, a barrel of laughs and it brings absolute joy to children from all areas.

We’ve had a couple of reviews so far on Trip Advisor from audience members from our first 3 shows and every single one has been utterly positive and complimentary. It’s such a great feeling knowing people are enjoying themselves. One woman even said that her son laughed so much he nearly wet himself!

The show opened on Saturday 8th December and is going very well so far. We’ve just had two lovely days off after working 12 days in a row and will resume the show tomorrow morning, when we will be greeted with a very packed audience full of School children – Lord help us all!

I must admit, staying in Clacton has been interesting and is definitely different to what I’m used to. Some of us are staying in a little hotel called The Langtry. It’s a bit Fawlty Towers but it does the job! The kitchen situation is a bit difficult though so low carb has gone a bit out of the window for now. We are sharing a small kitchen with limited cooking facilities with the rest of the residents within the hotel. We have 1 small fridge to share so we can’t really go mad buying fresh fruit and veg because there just isn’t the space to store it all. We also need to take food to the theatre which is easy to heat up or just eat cold between shows. I’ve been trying to eat a lot of soup because I can use the microwave at the theatre but it’s not the most sustainable amount of food when you’re working all day! We are lucky that our hotel is a 2 minute walk away from a Wetherspoons for an occasional meal there. However, I can’t afford to keep spending money out and being in spoons just leads to having a few glasses of wine… oops.

I always find that the old blood sugar goes on a bit of a rollercoaster ride whenever I’m performing. During a show my blood sugar is usually running a bit high due to adrenaline, but I can’t do anything about that! I am lucky that it’s been quite good the rest of the time though to balance that out. At least I’m not having any mid-show hypos! That would only lead to an absolute disaster I’m sure!

I have learnt that the majority of the cast have partners, parents and housemates who are type 1 diabetics too! So no one particularly bats an eyelid whenever I check my blood sugar or do an injection. Not that it would matter if they did, but it just makes me feel very at home knowing it’s not an issue for anyone.

We have 27 shows left to perform and also have Christmas Day and New Years Eve to look forward to. I’m actually heading up to Coventry to spend Christmas Day with Bobby and his family and then I will be driven back to Clacton for a 2pm show on Boxing Day. For New Years Eve the majority of us are staying in Clacton so we’ll definitely be having a night out here before we perform our final (probably slightly ropey) show on New Years Day!

If you want to buy tickets for the show then you can do here!