Thursday, 7 June 2018

Why I'm Organising the "Young, Fun and Type 1" Event!

As most of you know, my name is Alyssa Faulkner and I am the organiser of the ‘Young, Fun and Type One’ event in Scotland. The event is for young adults aged 16-30 living with Type 1 diabetes in Scotland, and there are going to be workshops and presentations on a range of topics, including travelling with Type 1, pregnancy and parenting, sports and university. I am in this age group (I’m 19) and I think this will be an amazing event because it is organised by young adults for young adults, the majority of the speakers and volunteers will be young adults, and it isn’t an event where health care professionals try and guess what they think young adults want.

I noticed that a lot of the programmes run by Diabetes UK are more aimed at children living with Type 1 diabetes and their families or older people with diabetes, and while these are very important programmes, I think it is important to have something purely tailored for young adults, where they can be themselves and where everyone around them will understand, and hopefully make some friends. Originally, I was going to take my idea to Diabetes Scotland and hope that they organised something, however I ended up thinking “Why don’t I organise it?”. I have lived experience, I have been to a couple of events similar and although it would be a challenge, I believed I had the capacity to do it.


I pitched the idea to Diabetes Scotland, and after a lot of negotiating about everyone’s roles, the ‘Young Fun and Type One’ event is going to be held on the 23rd June at the Glynhill Hotel in Renfrew! As I am part of the Diabetes Scotland Young Leaders project, this event is one of the projects that is included in that. This is a free event, so if you fit the criteria, bring a friend or family member (they don’t have to live with diabetes or in the age range), register here, and I’ll see you there!





I was diagnosed with Type 1 Diabetes over 5 years ago now, when I was 14 years old. When I was diagnosed, I feel I was a bit naive about the challenges that were ahead of me, and it wasn’t for a couple of months that I realised that living with Type 1 diabetes was difficult, and that I would live with it for the rest of my life. I still remembered what it was like to go to school, have lunch without having to give insulin, go to P.E. and not have to check my blood sugar and reduce my insulin. Just small things that all add up.


I felt a bit lonely for the first months, because it was always me having to explain to other people why I needed insulin and no, I couldn’t go to the toilet to give my injection because it made you more comfortable. I was never around people who fully understand, and I think that’s why when I found some of the online groups for teenagers with Type 1 diabetes, I was so relieved. I could vent and ask questions to people who understood.


On that group, someone posted about camps that Diabetes UK run called ‘Care Events’ (which are now called Type 1 Events) and the one I applied for was a week-long one for young people aged 16-18 living with Type 1 diabetes. It was an incredible experience because not only did I make life-long friends, it was amazing to have a full week of not feeling like the odd one out, because everyone was testing their blood sugar and taking insulin.


This is why I wanted to organise a day event for young adults living with Type 1 diabetes, because I have experienced what it’s like to feel a bit isolated with Type 1 Diabetes and also experienced what it is like to have a network of people around you who understand, and I want a lot of people to experience that!


See you there, and until next time,

Alyssa x

Saturday, 12 May 2018

University and Applying for an Extension


I was recently talking to a psychologist (not diabetes trained) who couldn’t understand why my blood sugar should ever be high or low. She told me that she just wanted to shake me and make me try harder. She was COMPLETELY shocked when I told her that it isn’t as simple as doing regular exercise, having a healthy diet and taking a daily dose of insulin. She couldn’t believe that things like hormones (such as a woman’s monthly cycle, adrenaline, endorphins, etc), heat and stress all affect blood sugar. It is so frustrating that health care professionals have this view, and this all contributes to the misconception that having high and low blood sugar is always the fault of the person living with type 1 diabetes, instead of a factor out with their control.

These past few months have seen a few major changes for me. I got a new insulin pump, however when I got that I got stopped on the Continuous Glucose Monitor (CGM, it continuously tracks my blood sugar and alerts me if my blood sugar is going low or high). I have had the CGM for 4 years, and it is a big change for me. I had it funded because I struggled to control low blood sugar and sometimes had seizures because of it, so my safety blanket was taken away.

I have just completed my 2nd year of University, and this came with a lot of stress. During the semester, we have regular classes and contact time at the university, and sports clubs have regular training, and having this regular routine makes living with type 1 diabetes easier to handle. Having a routine with type 1 diabetes really helps, as you don’t have new situations to tailor your insulin doses to everyday. Having an insulin pump does help with this, meaning it is easier to change insulin requirements, as it can be done at the click of a button, but it is such a hassle and you don’t always get it right.

When the semester came to an end this year, so did classes and regular sport training sessions, and it is more difficult to handle diabetes (in my personal experience). It is easier to oversleep when you don’t have anywhere specific to be and it’s easier to avoid regular exercise, both things that affect diabetes control for me, and increase my blood sugar. After the classes finished I had to write a few assignments for university, something that required concentration and a lot of thought, and something that I couldn’t do when I had high blood sugar, which came from the lack of routine.

It takes time for high blood sugar to come down, insulin takes 20 minutes to start working in the body and is active in the body 4 hours. A symptom of high blood sugar is low mood, it makes me feel so angry and sad at everything, and it is impossible to get any work done when feeling like this. With the fatigue and lack of concentration that comes with having high blood sugar, lack of routine, the low mood associated with increased blood sugar and the time it takes for blood sugar to drop, I was finding it very difficult to write coherently. I was getting come work done, but it takes a lot longer to concentrate and it often doesn’t make too much sense.
Netball!
This is why I decided to apply for an extension on the remainder of my essays. I was becoming so stressed at the looming deadlines that it was another factor that was affecting my blood sugar, and I needed to be able to complete my assignments calmly, without too much stress. I also needed to stop and take care of myself, some time to relax and de-stress, otherwise I knew that I would end up being completely overwhelmed and burn out completely.

I decided I needed an extension for my assignments the day after the deadline, however I still applied and hoped for the best, continued to write my assignments and thankfully I got granted the extension request. I got an extra 2 weeks for the remainder of my assignments, but I didn’t want to abuse this, so I only used what I needed from it. I took time to myself because I knew that I needed to relax, and I finished my assignments only having gone 2 days over the extension deadline. The pressure was lifted, and because I wasn’t as stressed about a looming deadline, and I was able to concentrate and get my head down.

I am aware that not everyone living with type 1 diabetes has these problems with high blood sugar. I am finding it especially difficult right now to keep my blood sugars in range, and hopefully in time I will be able to handle things myself a lot better, however right now I knew needed to ask for help and accept that it is okay to do that. I can still do everything, but when I’m feeling rotten, I find an easy task nearly impossible, and so I do need to sometimes focus on my myself and my health.
Until Next Time,
Alyssa x

Tuesday, 27 February 2018

Admitting it to Myself - Weight and Diabetes

I moved to university in September 2016. I went straight from school, into university halls, and it was a big adjustment. Having never lived anywhere but in my mum’s house, having to fend for myself was pretty weird, but I was glad I did. With moving out, to a completely new city, meant that I had to met new people and make new friends. When I was around new people, I often tried to hide the fact that I had Type 1 Diabetes, often being really open about it online, behind a screen, but not testing my blood sugar in front of people, or taking out my insulin pump, because I didn’t want any of my new friends to see that side of me, the vulnerable side. It sounds so stupid explaining it, because no one has ever said anything against me being diabetic, but the truth is that I often ignored it when I was with other people, and that then led me to continue ignoring it even when I was alone.

Something that a lot of people don’t realise, is that having high blood sugar feels rubbish. You feel so tired, like your legs are full of led and they don’t want to move. You get unbearably thirsty. You can’t concentrate on anything even the simplest of tasks are difficult. Reading isn’t possible because you read one line, and then you forget the previous line. One prominent thing that happens to me is my mood becomes so low, I get angry and sad at everything, even the smallest thing would set me off. That would cause me to lock myself away in my room so that no one would be on the receiving end of one of these moods.

Another prominent thing that occurs from having prolonged high blood sugar is weight loss. I’ve never been a skinny girl, but all of a sudden, I was slim, I felt good wearing a crop top and a short skirt, and that felt amazing. It was false though, because what I didn’t realise at the time is that I had lost the weight very unhealthily. I still ate junk food all the time, barely cooking any meals and relying on unhealthy ready meals for sustenance, barely exercising, and I was still a healthy weight. Things never clicked for me that the reason I was maintaining a healthy weight was because I was neglecting my health, missing doses of insulin and not checking my blood sugar.
Let me say, having periods of high blood sugar can be very dangerous, but as long as I was having small amounts per day, I can get by without intervention from say the hospital. So I was getting my background insulin, which is continuously dripped into my body via my insulin pump, and not giving any insulin for food.

After a while, around my second semester of university, I realised that the reason I was losing weight, and my mentality changed. I started purposely “forgetting” my insulin doses, knowing that I would remain slim, possibly even lose more weight. I did this nearly every day, it was almost an obsession. Most of the time, I would only do it if I ate something particularly unhealthy, almost binge eating and then not giving insulin so that those calories wouldn’t count. I went to the hospital and got my long term blood sugar tested (the test is called hba1c) and it was 12.9, which is extremely high and quite dangerous. I became so unhappy, because although my weight was being stabilized by my habits, my mood was so low all the time, I couldn’t concentrate on anything, and I just locked myself away. University was becoming so hard, as it took me twice as long as everyone else to understand things.

When assignments were due, I would make sure my blood sugar was normal, so I could concentrate, go to the library and work, then come home and immediately make my blood sugars higher again. I would attempt to go on nights out with my friends, but I would feel so tired the whole night that I would end up coming home early myself anyway, so after a while I stopped trying. It was always worse when I know I didn’t have anything specific to do that day, so I wouldn’t bother doing anything except eating and making my blood sugars higher.

Over summer 2017 things got a lot better. I was so busy all the time that I didn’t have time to be unwell, even have a chance to think about things, so I just got on with it, gave my insulin but still ate the same kinds of food as before. I felt so much better in myself, I was so productive and that’s the way I like it. I was starting to get so many opportunities, I couldn’t waste them being unwell. This was all good, but a fact that isn’t well known about insulin is that it is the main fat storage hormone in the body, and because I wasn’t eating well, meaning I needed more insulin, I gained all the weight I had lost and put on some more.

I have recently started to do more exercise, the main reason being to up my fitness levels, but another incentive was because I wanted to lose some of the extra padding I have gained. The problem is that I'm still not eating very well. Although on the whole my blood sugar is better, I'm still binge eating quite a lot and not giving insulin for it. I find it so difficult because I have the tool to lose quickly really fast, right on my finger tips. All it takes is to omit my insulin even once, and the temptation is often so strong to do this. In the moment, it often feels like the best of both worlds. I get to eat as much as I want, and not have any weight gain.

This was really hard for me to admit to myself, and it's even harder to write about. I am currently trying my hardest to lead as healthy a lifestyle as possible. I am fully aware that my actions are destructive, and can lead to further complications, however sometimes in the moment the long term issues aren't on my mind. Right now I am concentrating on exercising and eating better, and hopefully my blood sugar will improve with this. Although this is a daily struggle, I know that I can't continue this lifestyle.

Until Next Time,
Alyssa x



Saturday, 24 February 2018

The Injustice of Minumum Wage

I work in the food industry, and that means that as a 19 y/o receiving minimum wage, I get £5.60 an hour for my labour. In 2017, the living wage was set at £7.50 for those aged 25 and above, and this was implemented to make sure that those working had enough money to live on. This doesn't sit right with me, because by putting an age limit on the living wage comes an assumption that those aged under 25 don't have as many responsibilities. I have rent and bills to pay, food to buy, and it isn't fair that because I'm not old enough, I'm not entitled to the same wage as a 26 y/o when I am doing the exact same work!

Let's say that a 20y/o student was receiving the minimum student loan, which didn't cover rent costs. With a minimum wage job, the money still may not cover living costs, forcing them to either use a student overdraft or a payday loan. All of these things are a sticking plaster, a means to get by from day-to-day, and have to be paid back eventually. Now with the student loans that already need to be paid back, and the loans that allow day-to-day operation, the debt only gets worse. It has become acceptable to offer someone a temporary fix rather than pay someone a fair wage, it's another way to avoid responsibility.

According to "livingwage.org.uk", the UK average for what the real living wage should be is £8.75, and yet the national living wage is £7.50, so already there is a disparity in what is needed and what is provided. Yet I, because of my age, something that is completely outwith my control, earn £5.60, which means I earn £1.90 less per hour than my colleagues at the same level as me who happen to be over 25.

In my work, everyone is trained in the same way. Everyone does the same work. Everyone works the shifts they are given. The minimum wage was calculated by the UK government based on what they thought employers could afford, however by doing this it is saying that the profit the owners get is more important than the wage employees deserve. According to "livingwage.org.uk", businesses get increased motivation and retention rates when they pay a decent wage, and that is improves relationships between managers and their staff. Paying staff an equal and fair wage has so many benefits.

It is ridiculous that there is still a wage gap. There has been massive steps forward in terms of equality in recent years, for example, recently woman have celebrated 100 years of the vote, but there is a massive way to go. Having the minimum wage law allows employers to continue on a hierarchy, with the gap between employers and employees becoming wider, with people on low incomes still struggling to get by, and the profit staying at the top. They say one step at a time, but surely my wage should be determined based on how hard I work, rather than how old I am!

Until next time,

Alyssa x

Friday, 19 January 2018

Diabetes and Social Media Burnout

If you follow my blog regularly, you'll notice that I have been a bit absent and haven't posted in a while. There are many reason for this: Being extremely busy with University and placement, having personal things going on at home, but mostly because I needed a break. I try to be as honest as I can about my health, but I found that by talking about being Type 1 Diabetic all the time, it became how I defined myself. I was the diabetic girl, I blogged about my health and the people around knew all the ins and outs of it, and what I wanted most was a break.

In the times of social media, everything is so public, and I have craved a bit of privacy, to be in my own bubble for a while and take care of myself. I have found myself being obsessed with getting other peoples approval on Facebook, Twitter etc, and I am embarrassed to say that I do care about how many likes and shares my posts get. I needed to take a step back, and start seeking my own approval for things, rather than craving approval from others, and not be measured by the amount of likes I get.



Social media, in terms of support, can be brilliant. There is a brilliant community of people out there, who understand what it is like to live with Type 1 Diabetes, who can offer an ear and a hand when needed, but with this comes judgement. I found that being on social media, I can hear so much support, but if I hear even one piece of judgement or disapproval about the way I personally do things, it sticks with me. I know that there are so many wonderfully supportive people out there, but I can't help take the negative comments forward and let the positive comments fade into the background.

So yes I am busy, and I do think social media is brilliant, however I am trying to use it with a lot more caution than I did before. I want to continue spreading awareness, educating people what it is like to live with Type 1 Diabetes on the daily, the challenges it brings and how I control it in my life, but I am now going to be more apprehensive of what I put online. I believe this will be better for my mental wellbeing in the long run, to not obsess over whether other people are judging me.



I will still be as honest as possible. The reason I started blogging was to help the people around me understand that Type 1 Diabetes isn't just taking an insulin and being fine, and I still want to do that. I have just realised that I don't need to put everything of myself online in order to do that.

I hope that you all will continue to follow my blog.

Until next time,

Alyssa x

Monday, 6 November 2017

Placement - Type 1 Diabetes and Epilepsy

In the summer I got diagnosed officially with Epilepsy. I had been having seizures for a while but just put that down to having Type 1 Diabetes, but when I had a seizure not related to my blood sugar, I realised that it was something more. At first it was hard to accept that I had another thing to consider and factor into things, something I had to declare when I started new jobs. I found it daunting because when I just had Type 1 Diabetes, it was easy for me to explain that I would control things, but the nature of epilepsy is that it is unpredictable. I got by the Epilepsy team that there are things that lower my seizure threshold, including alcohol, stress and being tired, and being stressed and tired are normal in my life at the moment.


I study a course at University called Community Learning and Development (CLD), and as part of that I go on work placement for a whole semester. Obviously, when I started that I had to state that I lived with both Type 1 Diabetes and Epilepsy, and my worry was that I would get coddled and treated differently due to this. I was also worried that being diabetic would affect some of the work I did, for example, if my blood sugar was high I wouldn't be able to concentrate the same way and it would affect my work, or I would have to take some days off due to a seizure. Most of all, I just don't want it to affect me being successful at university.



Selfie with Nicola Sturgeon I got while on placement!
Right from the start, everyone was lovely. No one even took it as a factor when asking me to complete work. They treated me as an absolute equal, which I was really happy about. I told everyone at the start that I would let them know if I wasn't well or if I needed anything, and they have been really respectful in terms of hospital appointments. It is always on the back of my mind though.

I have said it before, that Type 1 Diabetes is 24/7, it doesn't just go away after you give insulin. It factors into everything you do, and as placement is very unpredictable in terms of routine it is often a bit more difficult to control my blood sugar. I don't get everything perfect, and this means that the work I do at placement drains me even more. Even if my blood sugar is slightly higher than it should be, I get tired and have to try harder to concentrate. This means that when I finish my working day, I am often so exhausted and find it hard to do anything else in the evening. I am doing placement for 35 hours a week, and I also have to do a portfolio of my practice, and I find it hard to keep up with the portfolio because I am so tired. Not having the time or energy to do this work stressed me out, and the fact that I was stressed made me even more stressed due to me having epilepsy.

I also oversubscribe myself a lot. I play netball, volunteer, and after placement and my Uni work, I am absolutely drained, and throughout this it is always playing on my mind that being tired and stressed can lower my seizure threshold, but I desperately don't want to give up anything I do, and I am absolutely determined not to let Type 1 Diabetes or Epilepsy hold me back doing anything. That is just me being stubborn, and that is how I slowly and accidently burnt myself out.

Me dressing up for placement Halloween event!
I am having such a good experience on placement. I enjoy all the volunteering I do. I enjoy playing netball. I just have to admit to myself that I can't do everything, that I have to take a break and make time for my health. I have in no way figured out how to do this, but I have cut back the amount of volunteering I do, and I haven't stressed about doing exercise, but I still try to do as much as I can. I have also tried to make sure that if I do have alcohol (I am a Uni student so alcohol is almost inevitable!) that I have some downtime afterwards in case something does happen.
I did have a point where I was so burnt out that I wanted to quit. I didn't talk to anyone, I didn't go to netball and I ignored the ever-growing pile of work that I had. I did the bare minimum, then came home and watched TV. I then realized that I just needed to take some time for myself every now and then, understand that I do have limitations (as much as I hate to admit it!) and for the time being, I need to scale back.

And although I haven't quite figured out how to do this yet, I am working on it. I know that placement is only until the end of the semester, but after that I will have other things happening. I just need to take time every week to figure out what self-care I need to do, whether it be talking to friends, family or just having a day doing absolutely nothing.

Until next time,

Alyssa

Sunday, 5 November 2017

The Insulin Gang

When I was first diagnosed with Type 1 Diabetes, a little over 4 years ago, I did feel quite alone. I looked at Facebook for support, and accidentally stumbled across a page called "The Insulin Gang". On this page was a multitude of like-minded people who all had some connections to Diabetes, and there were so many different experiences that were posted on this page, it really helped me understand and come to terms with my Type 1 Diabetes.

I spoke to Donna Hall, the woman behind "The Insulin Gang", to find out where the group stemmed from and what her inspirations were for creating the group.

Left - CerysAnne (16), Middle - Donna, Right - Alena (13)
Q - Why did you decide to start "The Insulin Gang"?

A - It was when Cerys-Anne, my then 9-Year-old daughter, was diagnosed with Type 1 Diabetes after a prolonged chest infection, that I wanted to get her and others connected, as we didn't know of any children with Type 1. I started "The Insulin Gang" when promoting a child's support group that we built online of the same name. Whilst the forum designed to bring children with Type 1 together only ran for a while, the Facebook page quickly acquired members. I later changed the Facebook page to a public group, then a closed group at the request of many members.


Q - What have you gotten most out of creating and running this group?

A - Since running the support group, I've made connections with so many different people from all walks of life and that's meant a huge source of continual support given and received by members of the diabetic community. I've witnessed friendships developing and that feels lovely and also I've made personal friendships, even meeting up with members of the group and forming long lasting friendships which of course impact positively on our children.
The Insulin Gang provides a platform for information, shared ideas, acknowledgement of the latest research and development in Diabetes but also offers a place where people can just be honest and be held, listened to and understood. Everyone just "gets it"


Q - Do you feel that starting the Insulin Gang helped you and your daughter care for your Type 1?

A - Having the Insulin Gang has personally helped me to feel like life with Type 1 is more normalised and achievable. We didn't know any other children with Type 1 Diabetes and that felt daunting and isolating. The level of support that goes full circle online is crucial I think, especially when support offline doesn't always come in abundance. It's good to read others experiences and management suggestions. It serves as educational and inspiring.

Q - Why do you feel the Insulin Gang has been a success?

A - I promote conversation on there by asking questions to build more connections between people and I hope people all feel totally at ease in sharing their concerns, questions and burdens but equally their celebrations of successes with life living with Diabetes. Diabetes can feel relentless, all consuming and imposing at times. The diabetic community is a force to be reckoned with. SO many wonderful people waiting with advice, support, action and friendship. It's quite amazing. So many people raising money and awareness. It's a great feeling to witness and be part of. The Insulin Gang brings a sense of camaraderie that is essential to many and myself I believe.



"The Insulin Gang" isn't the only project that Donna works on. She also runs a parallel group called "Adventures of the Insulin Gang Travelling Bears", and this group sends out special bears to children with Type 1 Diabetes around the world, where they fill in a diary about their time spent in each place, and pass the bear onto the next person. She does this will studying and being a parent.

"The Insulin Gang" now has 4.7k members, and whether they are parents of someone with diabetes, family members, or they have diabetes themselves, I'm sure it will continue to provide support to many in years to come!

If you are interested in joining "The Insulin Gang", here is the link to the facebook group > https://www.facebook.com/groups/495961283869403/