Thursday, 21 September 2017

News of Freestyle Libre on NHS

Recently, on the 13th September 2017, the Type 1 Diabetic community had a massive win. The Freestyle Libre, which is a sensor on the arm that is scanned to get an overview of the users blood sugar, is now being funded by the NHS (National Health Service, our healthcare provider in the UK) as of 1st November! This is massive news, because up until now the freestyle libre had to be funded privately, meaning only those who had the means of paying £100 per month at least could access this technology. Now that it is being funded, this amazing piece of technology can be more inclusive, giving everyone a fair chance at accessing good diabetes care.

Me wearing my CGM proudly on my arm!
The freestyle libre, a flash glucose monitoring system, is the size of a 2p coin, normally attached to the back of the arm, and the purpose of it is to reduce the amount of blood tests that a Type 1 Diabetic has to do throughout the day. It differs from a CGM (continuous monitoring system) as a CGM links to another device all the time, and alarms if your blood sugar isn't on track. As amazing as the Freestyle Libre is, some people need the comfort that they will get an alarm if their blood sugar is dropping, for example, because they don't recognise when they are low, or are prone to severe hypos.

I myself use a Medtronic CGM, normally on my arm, and that links to my insulin pump. My insulin pump then alarms me if I am approaching being low, to prevent me from actually having low blood sugar. It also suspends my supply of insulin if it then senses that I'm actually having a low blood sugar. If you follow my blog, you'll know that I often have seizures that are related to low blood sugar, and so wearing this CGM is such a comfort to me, as I don't have to worry as much about having low blood sugar. If it does happen, I have a back up of knowing that I won't be receiving insulin via my insulin pump, and that will eventually bring my blood sugar back up. As I am wearing this, I feel so much more independant. I now feel like I can do simple things by myself, things like taking the bus, or doing exercise, without being afraid that something will happen. This is a comfort that the freestyle libre wouldn't give me.
Proudly modeling my CGM on my Arm
In order for the NHS to fund my CGM, I had to put a business case in for it, proving that I really needed it. I had to do this as it is such an expensive peice of technology to fund, and not many people use it because of this. I have used it for over 3 years, and at this point I can't imagine my life without it.

This news is amazing, and it could help so many people, however I am worried that as the Freestyle Libre is cheaper for the NHS than CGM's are, those in need of CGM's because they don't recognize when their blood sugar is low or who have frequent severe hypos like myself will miss out.

We don't know yet what the criteria for gaining access to the Freestyle Libre, so for now my concerns are speculation. I honestly hope that this news is all positive, the people who need this technology will have access to it whilst the people who need access to the CGM will also have access to it. Only time will tell.

Until Next Time,

Alyssa x

Thursday, 31 August 2017

My Type 1 Diagnosis Story

I was 13, in Home Economics class, and I was being cheeky and angry towards my teacher, causing me to get sent out of class (which was unlike me). During the class, I asked to go to the toilet. I asked to go fill up my water bottle. I also asked to go to the medical room because I felt faint when I stood up. The teacher put all of these things down as typical teenager behaviour, me trying to skive class because I was being punished. She wasn't to know that I was being angry, constantly thirsty and needing the toilet, and feeling really tired and faint, because I had diagnosed Type 1 Diabetes.

I told my mum I felt unwell, and she told me that I should go home. Although I did feel slightly under the weather, I felt like I was faking it, and like I shouldn't be going home. While I was waiting in the medical room for my mum to collect me from school, there was a poster in the school by Diabetes UK. It was the 4 Ts campaign (Toilet, Thirsty, Tired, Thinner as the symptoms of Type 1 Diabetes) and at the back of my mind it registered that I had been experiencing these, but I never thought anything of it.

The 4 Ts campaign poster
It was a Friday Morning, I was at home after my mum dropped me off, and she called me to tell me she made a doctors appointment for me. I honestly thought this was a waste of time, because after sitting for a couple of hours, I felt fine. I told my mum this, and she told me that I was going to the doctors, because drinking about 4 litres of water in one morning and losing 2 stone in 3 months wasn't normal, and I agreed to go.

As it was last minute, we got an emergency appointment with the nurse at our GP. Atfer explaining to the nurse everything, she told me that she would take blood from me to test for things on Monday morning, but she didn't think it was anything. My mum prompted her that I had common symptoms of Type 1 Diabetes, and that a blood sugar test takes 10 seconds tops. The nurse looked doubtful that it could be Type 1 Diabetes, but agreed to give me a quick blood sugar test anyway. While she was setting up the test she told us that I would have to come back in on Monday to get blood taken and further tests done, because this test would be normal. My blood sugar was 28 moll/l (usual range is 4-7 moll/l), and the nurse told my mum to take me straight to A&E, because I definitely had Type 1 Diabetes. I could have ended up really ill over the weekend if my mum hadn't pushed the nurse to test me and I had just come in on Monday.

My dad and I, 6 days before I was diagnosed (notice how baggy the dress is)
In the hospital, I was told I wasn't in DKA (diabetic ketoacidosis) yet, so all I needed to do was learn how to inject myself with insulin, test my blood sugar and generally learn everything about Type 1 Diabetes. I remember a nurse asking me how I felt after my first insulin injection, and I told her I felt like I could go for a run as I was feeling so much better!

About 2 months before I was diagnosed, I was on a long bus journey with my brother. I only had fresh orange with me, and at every service station I had to run in, go to the toilet and get a litre of water. Afterwards, I told my mum about it, and she joked, "I wonder if you have diabetes". It was a complete joke, and she never thought it was true, but its hard to think that even though people know the signs, we don't believe the symptoms.

I remember me and my sister, Iona, going for a run at the park near my house, about a month before I was diagnosed. I had went to the toilet before I left, but I didn't bring any water with me. We had gotten to the park at a jog, and that took us 5 minutes, and I told Iona that I desperately needed to the toilet. She got mad at me because I had just gone, but in the end I had to go in the trees in the middle of the park, with Iona guarding me to make sure no one could see. We both went back after that, because I was too tired and thirsty to continue, and I just put it down to me being unfit. It frustrated me and Iona because all in all, we were out for about 15 minutes, and 5 of them was me trying to find somewhere to go to the toilet.

Iona and I shortly before I was diagnosed (I'm 3 years older than her)
So much happened that could have led me to think Type 1 Diabetes. I even saw a campaign with all the symptoms on it that I had, yet it never crossed my mind as a possibility, even when my mum was talking about it, until the nurse diagnosed me. I thought I was just a teenager feeling tired and going through puberty.

It is scary to think about what could have happened if my mum hadn't known the signs of Type 1 Diabetes. Doing a blood sugar test is so simple, and takes 10 seconds to do, yet the nurse didn't even consider doing one without prompting. My diagnosis isn't dramatic, I wasn't near death yet and I was only in the hospital for 2 days to learn the ropes, but it was the start of a lifelong journey. I didn't realise at the time how much of an impact Type 1 Diabetes would have in my life, but it is funny looking back to before I was diagnosed, and noticing the subtle signs.

It took one finger prick and one afternoon, to change the rest of my life, to discover that I will always be dependent on insulin to survive.

Until next time,

Alyssa x

Monday, 21 August 2017

Young Leaders Project - Weekend Residential

A group photo of the Young Leaders

Diabetes Scotland recently got funding to start a new project with young adults age 16-25 who are living with Type 1 Diabetes, with the aim of connecting young people and establishing a peer support network, building on their skill sets and give young people a chance to have a say and build on issues important to them, letting them be young leaders of diabetes in Scotland.

The first part of this project was a weekend residential with all the young people, and the intention of this residential was to build connections within the team, and to plan the first stages of the project. As everyone has different experiences with type 1 diabetes, everyone has different things they are knowledgeable and passionate about. That's why the focus of the project is to have every individual plan their own projects, which are supported by Diabetes Scotland and the other young leaders. This allows projects to be ran by people who are truly passionate about making a change.

Team challenges was the first part of the weekend. The first exercise we needed to do was get a tube over everybody, which required teamwork and communication in order to complete the task as quickly as possible.
The next part was trying to cross a "lava river" with only 6 blocks, and this required problem solving and again, team work.
Next we had to all safely get through a spider web, which meant we all had to rely on each other to be carried through!
Next we were all blindfolded and tasked with guiding each other along a rope and making sure everyone got through safely.
Finally we were tasked with carrying a mug of water through an assault course under time constraints, which definitely taught us that we need to communicate and help each other when one of us found it difficult.

All of these exercises taught us that we all have different strengths, and we can use those strengths everyone else. They were really good exercises in demonstrating how important it is to use the resources available to us, and that it is good to get a different perspective of every issue.

Over the weekend, we learned about TED talks, we brainstormed on issues that affect people living with Type 1 Diabetes. We talked about the different ways we could make an impact, including how to organise and run campaigns (a session I helped facilitate)
Me helping to facilitate a campaigning session
We came away with action plans on what we want to do, and every single person left the weekend excited about the year and the projects we want to do. We are receiving so much support from Diabetes Scotland, it's hard to believe that the project can be anything but successful.

Brainstorming / discussing ideas

When this project was announced, I was skeptical as with university and my other commitments, I didn't believe I would have enough time to make the most of this opportunity. I spoke to Katie, who is the leader of this project, and she said that if it is too much of a time commitment, I can take a step back for a while, and be as involved as I wanted.

You don't have to have any experience to be a part of this project, just be aged 16-25 and living with Type 1 Diabetes. The project is still recruiting, so if you want to get involved, follow the link below:

https://www.diabetes.org.uk/In_Your_Area/Scotland/16-25/


Sunday, 6 August 2017

Low Blood Sugar Seizures and Epilepsy


Although I have Type 1 Diabetes, I often feel like I have more anxiety than most about having low blood sugar. This is because when my blood sugar goes low, I often have seizures. My first major seizure happened when I went low (called a hypo) on a flume, and had to get fished out of the water at the botto. This has meant that the NHS has funded a CGM (continuous glucose monitor, which gives me a reading of my blood sugar every 5 minutes and sends the reading to my pump) for me to prevent my blood sugar going low, but this hasn't stopped them completely.

When I say I have seizures, I mean full Tonic Clonic seizures. I become unconscious, shake and am in and out of consciousness for a good half hour before I wake up with a very sore tongue from biting it, and feel like I am very hungover for the next day. I hate letting my diabetes hold me back, so I became so anxious of my blood sugar dropping, that I often used to let my blood sugar sit higher to prevent myself going low, which meant I was unwell a lot.

In April of this year, I woke up one morning, tested my blood sugar and it was 9 mmol/l. The next thing I know, I had a seizure. This was strange for me, because I had never had a seizure without my blood sugar being low, so this triggered a thought. Maybe low blood sugar was a trigger for seizures, and not the cause. I went to my GP with this, and after examining me to make sure there wasn't another cause, she agreed this was a possibility, and she referred me to a neurologist.

This is such a personal issue for me, as it causes me so much anxiety about day to day tasks. I have had seizures on the bus (3 times) and walking home, so it's hard for me to think about the possibility of me having seizures that are near impossible to prevent. I still sometimes get upset about the fact that I can't get my driver's licence because of these seizures, and the fact that if I have a seizure, I have to put the people around me at an inconvenience (which did happen at my flat at university).

I had my appointment at the neurologist, I explained everything that has happened with my low blood sugar seizures, and the one I had when my blood sugar wasn't low. She called my mum, who had seen me have the seizures, and could explain  what they looked like, and how I reacted. The neurologist then went on to tell me that I had epilepsy and that,  as I had predicted, low blood sugar was just a trigger to the seizures, rather than the cause. She put me on tablets to hopefully control these seizures, and said I had to go for a EEG and an MRI of my brain to find out more about my epilepsy.

I was really upset about having another thing to deal with, another label put on my head. I already have Type 1 Diabetes, now I have to declare on forms that I also have epilepsy. After the neurologist told me, I just walked around the city where I live, trying to process things, and get my head clear, before I could tell anyone. 

My tweets about the situation shortly after it happened
I have been on the tablets prescribed to me for over a month now, with no visible side effects, and I haven't had a seizure since April. I still don't know whether this is because I haven't had any bad hypos or because of my new tablets, but I am trying to control my Type 1 Diabetes better, as I don't like feeling unwell all the time. I am hopeful that in the future I won't have any anxiety about living my life, or going on the bus myself, and that maybe one day I can get my drivers licence.

Until next time,

Alyssa x

Monday, 31 July 2017

Volunteering on a Type 1 Event - Ardentinny

Top: Steven, Isla, Miguel, Andy, Kirsty, Lorna, Rory, Becky, Me
Bottom: Amy, Claire and Magic
This year I was a volunteer on a Type 1 Event, previously known as "Care Events", and it was such an amazing experience, I enjoyed every minute of it. I have attended two Type 1 Events myself, and I benefited so much from them that I decide that when I was old enough, I was going to return as a volunteer.

I got accepted as a volunteer at the 8-10 year old camp in Scotland, which was held in Ardentinny, Dunoon. I have never done anything with young people of this age before, and I had never met any of the other volunteers before arriving, so I was very nervous to start, but also really excited! At the camp I attended, which was for 16-18 year old, the young people were left to independently control our own diabetes, however I knew that on this camp the volunteers would have a lot more involvement in diabetes control.
Me, Andy (volunteer) and Becky (student nurse)
I arrived very early to the event. I didn't want to be late, so instead I arrived over an hour early, which meant that I arrived before anyone else. This left me sitting with my own thoughts and made me even more nervous. After sitting for around 15 minutes, the other volunteers started to arrive. They all seemed to know each other already, after having been on the camp together several times, but they made me feel welcome, and included me in everything.

Me and Becky (student nurse)
When volunteering on these camps, the team arrive a day early, which allows everyone to get to know each other before the young people arrive, and I'm so glad this happens. It gave me time to relax, and prepare myself for everyone arriving, knowing that I was supported by everyone. I soon found out that the team were very outgoing, and there was never a dull moment!

The volunteers are filled with a mix of Health Care Professionals, including Diabetes Specialist Nurses, Doctors, a dietician and a student nurse, as well as volunteers living with diabetes. This camp also had a special guest: Claire (one of the organisers) had a diabetes alert dog, which all the young people (and volunteers) loved!

Magic Alerting Claire
I was in a room with Isla (One of the Diabetes Specialist Nurses) and Rachel (a volunteer with type 1 diabetes). Both of them were lovely roommates, although these camps keep us all so busy we were like ships passing in the night, we barely saw each other! One of us would be on night-shift, which meant we got to sleep in the following day, or one of us would be on Wake-up, which meant they were up and out of the room before the others were even awake, or we would all be so exhausted from the day that we fell asleep as soon as our heads hit the pillows!

Isla and Magic in our room!
Throughout the camps, all of the young people got to do all activities throughout the week, but at different times, so we were all divided into groups. In each group there was 5 young people and 3/4 volunteers. In my group, there was Kirsty (the camp dietitian) and Rory (one of the doctors). Each of the groups had a name, Bob, Kevin or Stuart (named after the minions!), and Rory, Kirsty and myself were assigned Team Bob. There was also Steven, who could sub into a group if one of us got too exhausted or ill, and there was extra volunteers in each group, which meant we could switch around and still have enough volunteers should something happen.

Me and Kirsty before going Rock Hopping
Kirsty bringing the energy to our group

I have 4 words to describe the week: Loud, colourful, exhausting and priceless. Kirsty made team "Bob" so energetic, constantly singing, dancing and rallying the young people and me and Rory to participate in everything.  We did so many amazing and challenging activities, such as Gorge walking, rock climbing, rock hopping and dragon boating, I was exhausted, let alone the young people! However Kirsty made sure there was never a lull and made sure we made the most of every moment!
Team Bob's Trophy after we won the dragon boating competition!

It was amazing to see how much the young people got out of the week, not being the only one having hypos, having to count carbs and give insulin. They were the majority for once, and it is priceless to see how none of them were ashamed about anything, just testing, taking insulin and never letting having type 1 hold them back, things which they may have hidden at home!

Andy, Becky and I
It wasn't just the young people who got a lot out of this camp. After talking to the young people, and the other volunteers, I related to a lot of how they felt. Building a connection with a young person becomes a lot easier when you understand how they feel, and by the end of the week, I had a tear in my eye when they left.

Volunteering on these camps was just as amazing as attending them. You still get a feeling of belonging from both the other volunteers and the young people, but you also get to see the young people grow in confidence throughout the week.
Me and Kirsty posing as Rose and Jack

If your thinking of volunteering on a camp, I would highly recommend it! Especially at Ardentinny, the team are amazing, as are the centre who accomodated us I am hoping to go back to Ardentinny as a volunteer again next year. I definitely have the camp blues after coming home!

If your thinking of sending your child to a camp, definitely consider Ardentinny. The young people are taken such good care of, and the food is scrumptious!

Until next time,

Alyssa x

Monday, 24 July 2017

IDF Youth Leadership Camp


IDF Europe Youth leadership Camp




This year I was very honoured to be invited to the 7th International Diabetes Federation Europe Youth Leadership Camp, which was to be held in Cluj Napoca, Romania. As I haven't traveled at lot, I was very excited and humbled to attend this!

Me and Rebecca (The other UK Representative)

The process of applying was long. A lengthy application form had to be completed, stating what you have done in your country, how you would benefit from the camp, and why you should be selected over the other applicants, and you also have to get a letter of recommendation from your local diabetes association, which in my case was Diabetes UK. This application took me a while, as I wanted to make sure that I had represented myself in the best light. A couple of months later I received an email with the subject "CONGRATULATIONS ON YOUR SELECTION", which I was delighted and beyond excited about. One person from every EU country got selected, and I was the UK representative, so I was very happy about that. I later found out that someone from another European country had dropped out and so another girl from the UK had got selected in his place, meaning there was extra UK representation!

Me representing Diabetes UK while doing sports!

All the work I have done up until now has been national, either in Scotland or the United Kingdom. It had never even crossed my mind to try and reach people on a European level. However, on this camp, there was sessions on how to engage a wider audience, and on how to get sponsors for events to do so, which in turn has created some very daunting but exciting ideas. I have been given the tools that allow me to create campaigns, approach the leaders of diabetes, and make a change, which I plan to use as much as possible.



Most importantly this trip has allowed me to meet amazing contacts from all over the world. Not just the people teaching us, but also the participants, who have also done amazing things in their own country. These camps always have many benefits, from learning new sports, culture and skills, but I always find that the people I meet is the main benefit.

A group of us on the last night

I have attended many events about diabetes, but the IDF Youth Leadership Camp is by far the biggest event I have been honoured to attend, and will hopefully lead to bigger and better things! I would definitely recommend applying, even if you are unsure, because you never know what might come of it. Watch this space!

Until Next Time,

Alyssa x
It wasn't all business! Trip to the pub

Walking the beautiful landscape in Romania!
Group Photo!

Wednesday, 14 June 2017

High Blood Sugar - The Details

With type 1 diabetes, it is easy for blood sugar to end up higher than it should be, as there are so may factors that affect it. I often say to people, "I can't come anymore, my blood sugar is high" and I get the impression people feel this is an excuse I use to get out of things, when in reality I feel so unwell. Sometimes I can still carry on when my blood sugar is high, but often I get so exhausted that I have to rest and recuperate. When a person with diabetes has high blood sugar, it can feel so awful and draining, and it can feel embarrassing when it prevents you from doing things, but you have to respect my bodies limitations.

When my blood sugar is higher, I am always shocked by how thirsty I become. Think about being really dehydrated after exercise, but every time you quench your thirst, the feeling comes back after about ten minutes. Long bus journeys, long university lectures, with no access to water, are absolute torture. I normally carry about with me a litre water bottle with me just in case my blood sugar ends up higher. The excess thirst is also accompanied by increased urination. A trip to the toilet is needed every half an hour, even a simple shopping trip can get interrupted by having to find a toilet that can be used.



The biggest thing for me is the fatigue that I get when my blood sugar is high. I could have slept perfectly the night before but feel so tired the whole day. My whole body feels tired and heavy, and it takes so much effort for my limbs to complete tasks. Everything I do takes so much thought and effort. My mind feels tired, and I can't concentrate on anything. If I try reading a book, I'll read a couple of sentences, then forgot the sentences and have to go back and try and take in the information. That is why I found university harder at times. That is also why I have become a master at the famous student afternoon nap, because I am so tired due to high blood sugar!

Another bad symptom of high blood sugar is the effect it has on my mood. I become so emotional, so  the slightest thing would make me upset. If I am watching something on the television and a happy event happens, I will start crying randomly. I also become extremely irritable. I asked my mum how I act when I have high blood sugar and she said "When Alyssa's blood sugar is high, she becomes stroppy and argumentative. She will not do anything she doesn't want to do!" This is after asking her to be nice about it! The tiniest thing will annoy me, and I will get angry about it. My whole personality changes, and I can't control it, and it is really difficult to explain to people that it wasn't me who snapped at them, it was only because my blood sugar was high.

High blood sugar is short term, but can have long term effects on the body (which I personally try not to think about). It is extremely hard to carry out simple tasks, and for me, when my blood sugar gets higher, I am not in the right frame of mind often to correct it, due to the mood change associated with high blood sugar. It is a hard cycle as well, because if you correct your blood sugar with too much insulin, you can often go the opposite way and have low blood sugar, which in turn presents a different problem. Living with type 1 diabetes is harder than it seems.

Until next time,

Alyssa x