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,


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/

Thursday, 19 October 2017

Peer Support with Type 1 Diabetes

Ever since I was diagnosed, talking to someone who understood what was happening and who was going similar things helped. I met other Type 1 Diabetics at my school, but it wasn't until I attended a Diabetes UK care event (now called Type 1 Events) did I notice the real benefit. Everyday at this camp, I was surrounded by people who also checked their blood sugar, who also had hypos, who also struggled Day to day with type 1 diabetes, and it almost normalised these things. For once, I felt normal, not ill or different. When we went swimming, I wasn't the only one with a cannula in or with scars from countless needless. It felt amazing.

After this event, I still had a network of people who understood. We were connected through Something that could be considered a bad thing, but it had connected us . If I had a question or had a bad day, I had a bank of people I could ask, people that I trusted and who I knew.

I don't believe the first couple of years with Type 1 diabetes would have been as bearable if I hadn't received this peer support. Although most of the time we were connected through social media, I didn't feel as alone or isolated. I didn't feel like I was in it alone.

I have noticed that there is a massive gap in peer support in my area, and it is a gap that is present in a few areas throughout the UK. It is important that peer support is available to Type 1 diabetics, as it may stop isolation and feelings of difference. There aren't a lot of mental health support available and this is needed as Type 1 diabetics live with a chronic disability, which can often be debilitating. Although peer support isn't a substitute for mental health support, it can help quite a bit!

I decided to set up a group at university (with help!) for students in the surrounding area. University is a tough time for people living with type 1 diabetes, and I know the benefits that having a support network brings. I'm hoping that even if only one person shows up to the group, that one person benefits. The whole premise is that it is informal, not so much a support group where everyone talks about diabetes, but where we can all have fun, become friends, who all happen to live with Type 1 Diabetes.

A picture from our first meeting of the group!

I want everyone to have the support that I have. I have people to turn to if I have a bad day, and I want everyone to have that. People shouldn't have to suffer by themselves when there are so many people that understand.
I do now have contacts that act as peer support, both local and all around the UK (not to forget the international people!). They help me so much if I am having a hard day. Some aren't as lucky as myself, and have to deal with everything alone, and that needs to change. I appreciate that it takes a lot of organising, however it is essential that these things are organised. I want everyone ot have a support network like I have, because there are so many people out there that understand, they shouldn't have to go through it alone!

If there is a group near you, attend it. It is nerve-racking making that first move and attending when you don't know anyone, however for the people you meet it is worth it!

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