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/


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

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