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

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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