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:

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

Thursday, 1 June 2017

Why I decided not to pursue Nursing - 1 Year On

This time last year, after a lot of consideration, I declined my offers to study nursing at university. At the time, I was suffering from hypoglycemic seizures more often, and was advised that I may not pass the occupational health check that is required when working as a nurse. Even though I never actually failed the check, I decided, bearing in mind that these hypoglycemic seizures may take a regular appearance my whole life, that I would try and find another path, so that I wouldn't have to fight my entire career. I understood why I might be able to work as a nurse, someone could be in my care and something could happen to me, putting them in danger, it is just hard to swallow that my type 1 diabetes was holding me back.

I spent a couple of months with no clue what I was going to do once I left school. I applied to apprenticeships I didn't want, I applied to a stack of jobs I knew nothing about, and all because I hated being in turmoil, with no plan. My lack of enthusiasm for these must have been apparent as I never got any of these jobs or apprenticeships I applied to! I then decided I needed to talk to my guidance teacher at the time, and she suggested that I apply to another course at University through UCAS Extra, which is where you can apply late for university if there are still places available. Me and my mum searched nearly every course  that had spaces available, and I decided to apply for a course called Community Learning and Development, with was at Dundee University

No automatic alt text available.

Soon after I applied to this course, I got another opportunity. I was a finalist in the Young Scot Awards, and at the award ceremony, St. Andrews University announced that anyone who was a finalist would be offered a place at their university. I followed this up, and went to a meeting with them. They said they could offer me a place there, and so I was left with a decision. Should I go to such a prestigious school as St. Andrews, or should I go to Dundee and study a course that I was genuinely interested in. Again this was such a hard decision. In the end I choose Dundee, because the course was more work-based, and I felt that fitted me more. I was honored to have such options about where to go next after months of being so confused about what to do next.

The end of school, and the start of university was such a hard time for me. Leaving the safety net of school and actually having to decide what I wanted to do next was incredibly difficult, but I feel I have made the right decision. Things haven't been so smooth sailing over the past year, with moving away and having to discover how to live by myself, meeting new people, starting a new job, the learning curve was incredibly steep and at times I have been overwhelmed., however I have passed first year of my course, Community Learning and Development, and have hopefully found my future career.

In terms of my type 1 diabetes while I have been at university, things have been tough. I do still have seizures, the new routines have sometimes been difficult, and this is something I still do need to get to grips with, but on the whole I feel it was a good move. I can't imagine how different my life would be if I had pursued nursing.

Looking back, I was so stressed for ages because I had no plan. It just goes to show that things do work out in the end.

Until Next Time,

Alyssa x

P.s This is a blog post I wrote over a year ago, explaining my decision for declining my nursing offers at university.

Wednesday, 10 May 2017

4 Years of Living with Type 1 Diabetes!!

On this day, 4 years ago, I was diagnosed with Type 1 Diabetes. It has affected a lot of aspects of my life, so I made this video to explain some of the things I live with everyday!

I hope you enjoy the video!

Until Next Time,

Alyssa x

Monday, 8 May 2017

If it doesn’t affect you, it doesn’t matter, right?

There are so many different problems that people face, whether it is disability, their home situation, or the discrimination they receive, and everyone has had a different experience of life. I have come across people that aren’t empathetic towards people who are struggling, purely because they have no knowledge or experience of it, and they just write off the problem. Personally, I feel I have done this before. If someone comes to me with an issue I am unfamiliar with, I struggle to comprehend and respond to the problem fully. I do, however, try not to judge anyone, as I do not know their story or any of the struggles they have faced.

I do have a chronic, life threatening health condition, Type 1 Diabetes, and have faced people not understanding why some things happen. Often the seriousness of this is misunderstood, and people judge me if my blood sugar goes low or goes high, often asking how I let that happen. I have struggled, but I try not to compare my own suffering or experience with other people, because that can cause judgement if we didn’t deal with a situation in the same way.

I write about my experiences with diabetes, because I deal with it every day. It is a topic I am very familiar with. There are, however, a lot of issues that don’t affect me directly that are just as important as this. There are many issues that are raised, for example racism and feminism, that many dismiss because it doesn’t have a direct impact on their lives. I have witnessed people claim that it doesn’t even exist, because they are naive towards its impact. People don’t campaign for difference for no reason.

Be open-minded. If someone raises a concern about a topic you are unfamiliar with, discuss it, learn the facts and don’t be judgmental. Everyone is from different cultures, backgrounds and have different stories. People struggle in different ways, which are often private, and most actions stem from their backgrounds. Before being discriminatory, thinking or saying anything judgmental, remember that just because their issues don’t affect you directly, that doesn’t mean that it isn’t important. Words have impact, so think before you speak!

Until Next Time,

Alyssa x

Tuesday, 28 February 2017

Basic Facts About Type 1 Diabetes

I recently had someone approach me, and say "I know you have diabetes, but I don't actually know what that is". I decided that instead of explaining every detail of my Type 1 Diabetes to every person I meet, I should write a blog and tell people about it.

  1. There are 2 Types of Diabetes. Every Type 1 Diabetic is insulin dependent because the cells that make insulin in their bodies are dead. Type 2 diabetes can be related to diet, it can also be genetic but they are not always dependent on insulin.
  2. Firstly, Type 1 Diabetes occurs through NO FAULT of their own. It's not because we ate too much sugar or anything. It is an autoimmune disease which means my body essentially attacked it's own pancreas cells.
  3. I need to replace the insulin my pancreas can no longer make. There are different methods to do this. Some people inject themselves with insulin, normally a different kind of insulin for food and a different kind to cover your bodies natural function. I myself have what is called an insulin pump. I have a cannula attached to my body 24/7, constantly giving me insulin. I still have to tell my insulin pump how much insulin to give me based on how much I eat and how much I exercise, so it is not easier than injections, just different.
    A picture of the insulin pump I carry around at all times
  4. I have to do a finger prick and test my blood sugar to make sure everything is okay, so I know how much insulin to give and so I have an idea of what I'm dealing with. There are lots of different meters that check blood sugar, so if you see  2 different diabetics checking on different meters, everyone just does things slightly differently. I have a sensor that checks my blood sugar every 5 minutes, which sends a signal to my insulin pump, and alarms me to tell me if my blood sugar is dropping or not. It is not a replacement for a finger prick test though as it isn't always as accurate.
    Inside my blood testing kit, which includes a meter, blood testing strips, a finger pricker and a ketone meter
  5. I wasn't born with Type 1 Diabetes! So many people think this, but I developed type 1 diabetes when I was 14, some people can develop it as early as 2 years old or as late as 50 years old, it is different for everybody.
  6. Type 1 Diabetes is really hard to control. With so many factors affecting my body, it is rare that I get everything spot on first time. If I snap at you, it is most likely that my blood sugar is too high, or too low, so please don't take it personally!
  7. When my blood sugar is high, I can't concentrate. My words don't seem to be able to form, I struggle reading, I'm constantly thirsty and need the toilet all the time. I try to still do everything I can, but there are times when I have to admit defeat, and go for a sleep.
  8. There is NO CURE currently for Type 1 Diabetes. I will have to replace the insulin in my body for the rest of my life, unless they find a cure in my lifetime.

Personally, Type 1 Diabetes makes me soo tired. I can't do the whole staying awake til 3 o'clock in the morning unless I have a nap in the middle of the day. This one is personal, but some people don't realise how tiring it is to take care of yourself all day, every day, and sometimes not even see results!

Yes, people who have type 1 diabetes can do whatever they want, within reason (there are some careers we can't do). The current prime minisiter, Theresa May, is Type 1 Diabetic! That does not mean I do not struggle with it everyday, I have just become very good at concealing when I am unwell, and just getting on with things.

And if there are any questions that I did not answer in this blog, please just ask! Honestly, I would rather someone asked me if they were unsure of anything rather than presume the wrong thing.

Until Next Time, 

Alyssa x

Ps This blog is my interpretation of Type 1 Diabetes from what I have lived. I apologise if there is anything incorrect in it.

Monday, 20 February 2017

Developing Type 1 in Mid-life vs Developing Type 1 as a Teenager

I asked Adrian Long, someone I met at an event for diabetic people, to talk about how he got diagnosed with Type 1 Diabetes a lot later in life than myself, and I wanted to get a different perspective on how different someone's life can be depending on what stage in their life they were diagnosed.

This is what Adrian wrote:

Developing Type One in mid-life
I was diagnosed in December 1997, a few weeks after my 40th birthday. Quite a welcome to middle age! At the time, doctors told me it was highly unusual to develop Type One so relatively late in life*.
It was a genuinely difficult moment for me. Until that age, I had lived a life with minimal contact with the health service. I went an entire secondary school career (seven years) without a single day's sickness absence and as an adult I was one of those people who was “never ill”. Before the short illness which preceded my diagnosis, I had worked for 17 years as a teacher with a total of four days off sick (two lots of two). Moreover, I was a slim, healthy and active person, who cycled to work, tended an extensive garden and walked from my home to the local shops rather than driving.
At first, I was misdiagnosed as Type Two. My GP told me to "cut out all sugary foods", which puzzled me somewhat, as I have always had a famously "unsweet tooth"- there was little or nothing to cut down on. However, I agreed to do so, and came back a few days later - just before Christmas - to discover that my sugar level was higher than ever, so the doctor, persisting in his misdiagnosis, put me on medication for Type Two. At the time, of course, I knew nothing about either type, and this was in the days before google, so no chance for any online research.
It was only when I reported back with an even higher blood sugar level and no sign of feeling better that he finally wondered if it might be late-onset Type One. Off to hospital I went (only as an out-patient), where a consultant agreed it certainly was Type One, and referred me to the clinic to learn the arts of injection and blood testing. I did all this without missing any days off work, despite feeling very tired. Once the insulin started to have an effect (and that effect comes on almost instantly, as anyone with Type One will tell you), I was soon back to normal and in the years since then I have continued to take on all that life and work throw at me, all with an unblemished attendance record in a very stressful job.
After diagnosis, I found it very hard to accept my own limitations, drawing admiration from some, but worry and frustration to my own family. As an adult accustomed to a position of being “in charge” (I am a teacher), it is difficult to get used to sometimes being a bit pathetic or making a fool of yourself, for example when hypo. Thankfully, my control and hypo awareness were generally good, but I had my moments, most famously when I suddenly found myself sitting in my office at school eating biscuits accompanied by a Sixth Form student, with no idea how I had got there. I had been teaching a class and had apparently just “faded out” and stopped talking, so with commendable presence of mind, one of the group who knew of my condition took me by the hand and guided me to my nearby office, where he knew I kept my emergency supplies.
Embarrassing and amusing in hindsight, but I must say I always feel lucky to have missed diabetes as a child, teenager or young adult. It seems to me self-evident that there are multiple extra issues with the condition for those who are diagnosed young:
For very young children, of course, the issues are for the parents as much as the child. I shudder to think of the worry and heartache felt by parents having to deal with such a fickle condition, and in effect needing to act as the child's pancreas and I can well imagine the additional worries when a child starts school, or moves from primary to secondary.
But let’s not forget the child: it is so difficult to be fussed over, to be told not to do this, or be careful when you do that. Childhood has become so risk-averse in modern times, but for the diabetic child there's a whole extra layer of risk, and it's a real risk as well.

Then there's teenagers, who have to endure living with a condition that inhibits their freedom just at the time in their life when they want to start to express that freedom. At some point, possibly a source of disagreement, there’s the difficulty of taking over their own testing and insulin dosing after their parents have been doing it. Then there’s the daft and often downright nasty things that get said at school to kids who inject themselves, prick their fingers and sometimes start acting strangely. There are issues surrounding weight and food, especially for self-conscious adolescent girls. Sleepovers, sport, parties, trips and holidays all bring extra complications, and that’s before we even mention the effect of growing up, puberty and hormones. All of it even more fraught with complications for girls than boys.
For mid and later teens, the expected lifestyle is so fundamentally incompatible with diabetic life that I really feel for them. I wasn't exactly wild in my Sixth Form and student days, but I nevertheless enjoyed my fair share of late nights, missed meals and generally carefree spontaneity. If a young diabetic wants to enjoy drinking and clubbing, the hazards are self-evident.
Even for younger adults, diabetes is no friend. Busy lives, building a career and setting up home all carry risks, stresses and strains, and what about parenthood? I hear many a tale of sleepless nights with new babies made worse by diabetes. And let's not even mention the potential minefield of pregnancy. I so admire the women I know who have trodden that path with diabetes in tow.
I am in no doubt that Type One diabetes is best suited to sedate middle age - which is the age I was when I got it. Through #GBDOC I have in recent years got to know many other Type Ones, nearly all younger than me and the majority of them female. Unsurprisingly, most of them seem to have a more difficult time with diabetes than I normally do, but then I'm a man in my fifties who leads a pretty sedate and largely predictable life. Type One, male, middle aged and boring are a good match I think.

Adrian Long

*It has become increasingly common and accepted that Type One can come on at any age. UK Prime Minister Theresa May developed Type One at the age of 56

Being diagnosed as a 14-year-old girl, it was hard, but I wasn’t in the middle of a career that could be affected by type 1 as Adrian was. I did however go through a big transition of change in school, as I was suddenly very different from everyone else. I couldn’t go and get a Chinese takeaway at lunch like a lot of my peers did, and things like school trips were difficult. I did deal with it all very well at the start, just getting on with what I needed to do, but as I have moved away from home, I have found things a bit more difficult. The independence I now have, which Adrian had for a while before he was diagnosed, has been difficult for me to adjust to in terms of controlling my type 1 diabetes. The lifestyle I have now is completely different to this time last year, and it is yet another adjustment for me.

I wonder if I had been diagnosed as a young child, growing up with type 1 Diabetes throughout all the changes in my life, things would be easier with the massive changes that have happened in my life right now. On the other hand, Type 1 Diabetes is hard to handle in all stages of life.

In terms of Type 1 Diabetes being more difficult as a female, there are a lot of different factors all genders face. Females do carry children and that can complicate things, but males may have other issues with things. I do find it hard having an insulin pump and wanting to wear a nice outfit, but males may feel just as self-conscious. Everyone is different and it is hard to judge whether someone has it easier based on the gender they are or the stage they are at in life.

Until Next Time,

Alyssa x

Adrian's Blog -
Adrian's Twitter - @AdrianLong3

Monday, 30 January 2017

The Positive Impact of Diabetes Technology

Before I was on an insulin pump, I was oblivious to the benefits that came along with diabetes technology. I was plodding along using Multiple Daily Injections (MDI), not realizing how much easier things could be for me. Things like exercise, hormone fluctuation and having more freedom with food could be improved with the use of diabetes technology. Before, I would delay having a snack because it contained too many carbohydrates and I didn't want to give myself another injection. I would have to have extra carbohydrates for exercise that I really didn't want to have. If I had any extra hormones such as adrenaline, my blood sugar would sky rocket, and it would be really hard to deal with.

I moved onto an insulin pump from MDI around 8 months after diagnosis. I had read about them online, after reading online forums about how good they were and the benefits of them, I decided to find out more. At my next clinic appointment, I asked my team if I would be eligible for it, and they said I was, because I was young (age 15), I did sports and I was struggling a bit with food. 2 months later I started my training on how to operate the pump, and a month later everything was up and running.

Having an insulin pump meant I could go out for a coffee with my friends and have something other than water or diet coke, because before I didn't want to have to take another injection. It meant I could control my blood sugar during exercise. I used to do rowing, and having the insulin pump meant I could use temporary basals (changing the background rate of insulin) so that my blood sugar was more stable. It also allowed me to have the occasional sleep in, because I didn't have to have my meals at as regular a time as when I was on MDI.

My insulin pump with a graph of the data my CGM provided
When I started having Hypoglycemic seizures, that changed things. I had to quit rowing, because I would be putting myself in danger if I had a seizure on the water while I was rowing. When I had a seizure whilst on a flume, and put myself in danger of drowning, that triggered me asking my clinic about the possibility of a CGM (continuous glucose monitor, a device which would alarm if my blood sugar was dropping) because I was starting to get very anxious when doing anything that could potentially drop my blood sugar.

My diabetes clinic sent a business case to the hospital to request funding for a CGM. Not many people get funded from the NHS for a CGM because it is so expensive, but because of my special circumstances, I was funded for full time use. After a meeting with my nurse, I got my CGM and it made my quality of life so much better. Before, I struggled so much with walking to school by myself or taking the bus by myself, just in case something happened and there wasnt anyone around to help. When I had the CGM, which linked to my insulin pump, alarming if my blood sugar was dropping so I could prevent my blood sugar going low, and in the case of my blood sugar actually going low, my insulin pump would suspend the flow of insulin to bring my blood sugar up. It helped my anxiety about doing things myself, made me less apprehensive about having blood sugar that was in range but towards the lower spectrum of things.

Diabetes technology has made my life with diabetes better. I can control exercise better, by lowering my insulin beforehand rather than having to consume extra sugar. I can eat as much or as little as I please (within reason of course) without having to give extra injections all the time. I can handle stress slightly better (although this is still a tricky topic!). Most of all, diabetes technology, specifically my CGM, has helped me with anxiety about doing things myself. I do everything everyone else can do, such as having a job, going to University, having alcohol, doing sports and generally being a student.

I don't feel I would be able to do all this to the extent I do, because I have the reassurance of the CGM. Diabetes Technology has made a positive impact on my Type 1 Diabetes and on my life.

Until Next Time,

Alyssa x